z

Medicaid Long-term Care Servicesfor the Elderly,

Adults with Physical Disabilities, and Adults with Developmental Disabilities:

A Study of the Determinants and Utilizationof Institutional and Home and

Community-Based Services

Submitted to the Division of Aging and Adults Services, Arkansas Department of Human Services

OnFebruary 28, 2005

Principal Report AuthorsM. Kate Stewart, MD, MPH, Holly Felix, MPA,

Nancy Dockter, Dana Perry, MA, and Jinger MorganCollege of Public Health

University of Arkansas for Medical Sciences

Medicaid Long-term Care Services for the Elderly, Adults with Physical Disabilities, and Adults with Developmental

Disabilities: A Study of the Determinants and Utilization of Institutional and Home and Community-Based Services

Submitted to the Division of Aging and Adults Services, Arkansas Department of Human Services

OnFebruary 28, 2005

Principal Report AuthorsM. Kate Stewart, MD, MPH, Holly Felix, MPA,

Nancy Dockter, Dana Perry, MA, and Jinger MorganCollege of Public Health

University of Arkansas for Medical Sciences4301 West Markham Street, Slot 820-1

Little Rock, Arkansas 72205

Suggested Citation:Stewart MK, Felix HC, Dockter NE, Perry DM, Morgan JR. Medicaid Long-term Care Services for the Elderly, Adults with Physical Disabilities and Adults with Developmental Disabilities: A Study of the Determinants and Utilization of Institutional and Home and Community-Based Services. Little Rock, AR: College of Public Health, UAMS. 2005.

Acknowledgments

This study would not have been possible without the generous participation of those who agreed to serve as respondents in our focus group discussions and key informant interviews. Their willingness to give their time and share their insights, their personal stories and other experiences was an invaluable contribution for which we are deeply grateful. We would also like to thank the many people who helped to identify, contact, and/or process informed consents and HIPAA forms for respondents: Judy Adams, Nancy Craft Alexander, Jim Bradley, Gerald Canada, Max Delee, Leann Edwards, Richard Fong, Charlie Green, Margo Green, Sherri Hardin, Tracey Harris, James Hayden, Jean Hecker, Shelley Lee, Lesa Lewallen, Sherri Proffer, Marthelle Qualls, Lisa Richerson, Forrest Steele, Trichita Steel, Deborah Tenner, Linda Vining, and Katie West. We would also like to express our appreciation to Joe Crum, Laurie Jackson, Teresa Hursey, and Lanny Nordin for their assistance in obtaining secondary Medicaid data.

The Advisory Working Group provided important guidance throughout the course of this study and we thank them for sharing their expertise, knowledge and insights with us and for the hours they spent helping to define the study questions in ways that would be relevant, identifying data sources and helping us to gain access to data, and helping us to interpret and reflect on the meaning of our findings. Their input in developing recommendations was essential to the production of this final report. The members1 of the AWG are:

*Sandra Barrett – retired, Division of Aging and Adult Services (DAAS)Elaine Eubank, CareLinkDawn Graziani, RN, Arkansas Department of Health#James C. “Charlie” Green, PhD, Division of Developmental Disabilities Services (DDS)James Hayden, Division of Developmental Disabilities Services (DDS)Randy Helms, Division of Medical ServicesScott Holladay, Division of Aging and Adult Services*Rich Huddleston, Arkansas Advocates for Children and Families (formerly DHS)*Shelley Lee, MPA, Division of Developmental Disabilities Services (DDS)Sherri Proffer, RN, Arkansas Department of Human Services (DHS)Carol Shockley, Office of Long Term CareHerb Sanderson, MPA, Division of Aging and Adult ServicesLinda White, United Cerebral Palsy of Arkansas

As the primary authors of this report, we would also like to acknowledge and thank the rest of the members of the research study team, who helped to carry out the work of this study through conducting literature reviews; obtaining, processing, and carrying out computer programming of the secondary data; giving their expert guidance on

1 Some members of the AWG did not have continuous involvement because of changes in their duties (*) or chose to designate a representative rather than to participate personally in AWG meetings (#).

i

substantive and research methodology issues; reviewing drafts of instruments, sample designs, and findings and recommendations; and participating in AWG and research study team meetings. These additional members of the research team are:

Dean Blevins, PhDMarisue Cody, PhDNancy KirschAl McCullough, MSDavid Rickard, MPA

Last but not least, we would like to express our thanks to the Blue and You Foundation of Arkansas for providing the grant that funded this study and to acknowledge the Centers for Medicare and Medicaid Services for matching this grant with federal funds.

ii

Table of Contents

Executive Summary Page iv

Chapter 1. Introduction Page 1

Chapter 2. Study Methodology Page 9

Chapter 3. Availability of Selected Medicaid Long-term Care Services in Arkansas

Page 27

Chapter 4. Selected Characteristics and Enrollment Patterns of Arkansas’ Medicaid Long-Term Care Beneficiaries

Page 34

Chapter 5. Description of the Study Sample, and Characteristics of Participants in Focus Group Discussions and Key Informant Interviews

Page 56

Chapter 6. Leveling the Playing Field for Home and Community and Institutional Services

Page 62

Chapter 7. Information Dissemination and Counseling Page 73

Chapter 8. Improving Services to Meet Unmet Need Page 86

Chapter 9. Conclusion Page 99

Appendices

References

iii

Executive Summary

This report describes findings and recommendations from a study initiated by the Arkansas Division of Aging and Adults Services and carried out by the UAMS College of Public Health with funding from the Blue and You Foundation and the Centers for Medicare and Medicaid Services. The purpose of the study was to inform policy for improving long-term care (LTC) services for Arkansans by gaining a better understanding of why people in Arkansas use the LTC services they do. A variety of sources of information were obtained and compiled to examine this question. Specifically, secondary data on consumers of Medicaid LTC were obtained and analyzed, and primary data were collected from providers, through focus group discussions, and from consumers and others through key informant interviews.

Key findings centered on three themes: leveling the playing field between institutional and home and community-based services (HCBS); information dissemination and counseling; and improving services to meet unmet need. While the work of the study was carried out by a research study team, extensive guidance and assistance was provided by an advisory working group comprised of state policymakers, program managers, advocates and service providers.

The key findings and recommendations of the study are as follows:

Disparities in utilization may exist between whites and African Americans. Across the three waiver programs and institutional care services, white Arkansans below the poverty level enrolled in services at a rate higher than that of African Americans below poverty level. While waivers serve individuals with incomes three times SSI, i.e., incomes greater than

the poverty level, further study is recommended to determine if there are racial disparities and to better understand the extent to which they reflect differences in access between whites and African Americans.

Gatekeeping and difficulties navigating the HCBS program system may restrict access to HCBS. Recommendations include standardized, one-stop application/approval process for all Medicaid LTC services; face-to-face assessments by independent entity prior to authorization; fast track and presumptive eligibility for HCBS for those in emergency situations; and Medicaid-reimbursable, temporary nursing home stays for those awaiting approval for HCBS.

Individuals in nursing homes may be remaining there beyond the time when they need that level of care. Recommended is a cost-benefit analysis by DHS of mandated annual reassessments of all long-term care service consumers.

Mechanisms for achieving income eligibility are available for consumers entering nursing homes that are not available for those seeking HCBS. Recommendations are development of a medically needy spend-down option for HCBS applicants and a provision for spousal impoverishment for Alternatives Waiver consumers.

Overcoming system barriers sometimes required the intervention of someone in an advocate role. Recommendations are greater involvement of HCBS consumers in LTC policy formation and system change and improving access to information about HCBS.

iv

Many respondents used multiple, informal sources of information about LTC services instead of going to one formal source to get answers about care options. Recommendations to improve consumer awareness about LTC options and information sources include outreach through existing agencies and multiple points of community contact, improvements to telephone directory listings, promotion of the DHA/DDS website, and use of lay workers to inform consumers and help them navigate the LTC system

Many respondents reported that formal sources were sometimes not helpful in providing the information they sought about HCBS. Recommendations to improve knowledge about the viability of HCBS options and waiver programs among DHS field office workers and other social service providers include promoting use of the DAAS/DDS website, toll-free phone line, and printed materials.

Physicians played an influential role in decision making about LTC, but not for accessing waiver services. Recommendations include multi-faceted promotions to physicians, nurses, and support staff about the full array of HCBS and sources of information about LTC services.

Among study participants, there was an unmet need for assisted living. Recommended is an expansion of the number of affordable assisted living beds to meet the needs of moderate and low-income individuals, including those eligible for the Medicaid Assisted Living Waiver.

HCBS use could be increased through selected expansion of services. Recommendations include more flexible nursing care plans; expansion of allowed hours and services for HCBS care; broadening the Nurse Practice Act to permit CNAs and personal care aides to dispense medications and perform non-invasive procedures under RN supervision;

increased hours of Medicaid-reimbursable HCBS respite services for ElderChoices and Developmentally Disabled Waiver consumers; and making respite care a standard, more “intentional” offering of nursing homes.

Some of the needs of non-elderly, institutionalized adults with physical disabilities are not being addressed. Recommended is provision of more alternatives to the nursing home for non-elderly adults with physical disabilities, specifically shared housing or assisted living.

A few HCBS consumers reported problems finding reliable, competent direct service workers. Recommendations include exploration of ways to improve wages and benefits for both institutional-based and HCBS direct service workers and development of policies to address issues of competency, trustworthiness and reliability of aides and private HCBS agencies, such as Medicaid-reimbursed training, credentialing, and background checks.

v

Chapter 1Introduction

Long-term care (LTC) represents the continuum of health and social services provided

for an extended period or on a permanent basis to persons who have limited functional

capacity and require assistance. In their glossary of health care terms, AcademyHealth

notes that LTC is often used to refer only to institutional care settings, however, their

definition of LTC includes a broader spectrum of services available both in an

institutional setting and at home: “Long-term care [is] a set of health care, personal

care, and social services required by persons who have lost, or never acquired, some

degree of functional capacity (e.g. the chronically ill, aged, disabled, or retarded) in an

institution or at home, on a long-term basis.”i

ProgramsOver the years, Arkansas has implemented a number of innovative programs offering

individuals a choice of how and where they receive such LTC. Today more than 6,000

elderly Arkansans receive home and community-based care (HCB) through

ElderChoices, a Medicaid waiver for individuals age 65+. More recently a second

nursing home diversion Medicaid waiver program, Alternatives, was initiated for adults

with physical disabilities who are from 21 to 64 years. Likewise, Arkansas has one of

the fastest growing Medicaid waivers for individuals with developmental disabilities. A

variety of other programs such as Medicaid personal care and home health care help

individuals remain in their own homes.

Nevertheless, a large number of Arkansas seniors and other adults with disabilities

choose institutionalization instead of HCBS. On any given day, there are approximately

12,700 Medicaid recipients in Arkansas nursing homes. This accounts for about 70% of

all nursing home residents. There are about 1,200 100 individuals with developmental

1

disabilities in Human Development Centers (HDCs). Arkansas has one of the highest

rates for developmentally disabled institutionalized populations in the US. ii

While aggregate data on utilization of services have been reported nationally, iii less is

known about racial and geographic differences in use within Arkansas. In addition, only

anecdotal data are available to explain why some individuals use HCBS, while others

use institutions to meet their LTC needs. A variety of possibilities have been suggested,

including: 1) waivers do not provide the same level of care as institutions, i.e., 24-hour

per day care; 2) consumers, physicians, hospital discharge planners and others are not

aware of alternatives to nursing home care; 3) consumers, physicians, hospital

discharge planners and others have a bias towards traditional institutions; 4) entry into

an institution is quicker and easier than receiving services under a waiver; 5) the

presence of or proximity of patients to a caregiver as a practical matter determines

choice of services; 6) preferences and attitudes about services differ by race and

ethnicity; and 7) individuals are initially served by HCBS but later turn to institutions as

their condition deteriorates.

Faculty in the College of Public Health, University of Arkansas for Medical Sciences and

leadership and staff with the Division of Aging and Adult Services, Arkansas

Department of Human Services, partnered in a research effort to provide greater

understanding of factors which affect decisions about the utilization of types of LTC

services available to Medicaid eligibles in Arkansas. Specifically, the study intended to

provide information to inform program and policy recommendations to improve the LTC

services available to the elderly and disabled of Arkansas. This collaborative research

effort was funded by the Blue and You Foundation of Arkansas and federal Medicaid

administrative match funds. This report presents the finding of this study.

2

Literature Review on Determinants

At the onset of the study the research team reviewed the academic literature to

understand what is known about factors affecting LTC service utilization. During the

study, the importance of service knowledge and awareness became clear and the

research team sought further for studies looking into the impact of these issues on

service utilization. The following sections highlight the outcomes of this review.

Predictors of Nursing Home Use. The results of a literature review of studies on

factors correlating with increased likelihood of entry of an elder into a nursing home are

summarized in a table in Appendix A. The effects of elder consumers’ demographic

and health characteristics, social support, and health service use on the likelihood of

nursing home utilization were examined.

Age. As would be expected, the loss of functionality associated with rising age

increases the likelihood of nursing home admission. Data from a national sample of

persons 65 years of age and older, collected in 1984, showed that persons over 80

were at greater risk of institutionalization than their younger counterparts, and females

over 80 were at significantly greater risk of nursing home placement than their male

peers.iv Two years after the initial sample was taken, follow-up sampling showed that 62

percent of those originally reporting no limitations with activities of daily living (ADLs)

now reported at least some loss of independent function, 1 percent had entered a

nursing home, and 7 percent had died. A study tracking a cohort of Massachusetts

residence age 65 years and older over a 10-year period beginning in 1974 found the

risk of diminished functioning and/or nursing home placement increased with age,

particularly for those who at baseline reported impairment of at least one ADL. By year

10, of the females 65-68 year old at baseline and without any ADL limitations, 61.8

percent were still independent, compared to 47.7 percent of their male counterparts.

Further, of the same baseline group. 29.6 percent of the females had died by year 10,

compared to 47.8 percent of the males. Of those surviving, however, females were

more likely than males to be residing in a nursing home.v Yet, after 10 years, more than

two-thirds of all survivors were without ADL limitations.

3

Race. Patterns of use of long-term care services vary with race.vi, vii, viii, ix Being white is a

strong predictor of nursing home admission.x (See also Appendix A.) Dwyer et al in an

analysis of a large national data set of persons age 65 and older found that racial

differences in institutionalization vary with area of residence. No significant difference in

utilization rates were found between urban whites and blacks, but whites in small towns

and rural areas were more likely to enter a nursing home than their black counterparts.xi

Demographic variables and health status modified risks of nursing home entry for

blacks and whites. For blacks, poverty, functional limitations, age, and being without the

help of relatives during a period of illness predicted nursing home entry.xii For whites,

age, being female, lower income, poorer self-reported health, functional limitations,

living alone, and lower levels of community activity predicted use of nursing home

services.xiii

Gender. Consumer demographic characteristics commonly found to increase the

likelihood of institutionalization by elders are increasing age, being white, and not

owning a home. Being male and single were positive, but less common, predictors of

nursing home entry. On the other hand, as noted above, a trend analysis data tracking

an elderly cohort over 10 years found that females were more likely to survive and be

institutionalized, while males in later years were more likely to die and less likely to

enter a nursing home.xiv

Health Status. Health characteristics among seniors predicting nursing home entry

were ADLxv, xvi,xvii,xviii,xix,xx,xxi,xxii,xxiii,xxiv,xxv,xxvi,xxvii,xxviii or IADL

limitationsxxix,xxx,xxxi,xxxii,xxxiii,xxxiv,xxxv,xxxvi,xxxvii,xxxviii or mobility problems.xxxix,xl Self-reported poorer

health,xli,xlii,xliii,xliv,xlv limited social interactionxlvi,xlvii and having dementia,xlviii,xlix,l,li,lii,liii,liv,lv,lvi,lvii,lviii or

other mental health problems,lix,lx,lxi positively correlated with nursing home service use.

The majority of studies examining the effect of depression on service utilization did not

find that condition highly correlated with nursing home entry. lxii,lxiii,lxiv Medical conditions

commonly preceding entry into a nursing home were arthritis or other musculoskeletal

4

disorderslxv, lxvi stroke or other neurological problemslxvii, lxviii and diseases of the circulatory

system.lxix,lxx One study of two that examined the effect of diabetes on service utilization

found the disease to be an antecedent of nursing home use. lxxi,lxxii

Health Service Use. Consumers’ health service use predicted nursing home service

by the elderly. As might be expected, prior nursing home stays lxxiii, lxxiv, lxxv, lxxvi and recent

hospitalizationlxxvii, lxxviii, lxxix, lxxx were common antecedents to nursing home entry. Mental

health visitslxxxi and use of unpaid supportive care in the homelxxxii, lxxxiii, lxxxiv, lxxxv, also

correlated with increased probability of institutional care.

Developmentally disabled persons who are placed in residential facilities by their

families are more impaired and have greater behavior problems than those who remain

at home. The families who made decisions to place a family member with a

developmental disability in a residential facility tended to be larger, were more likely to

be headed by a single person, and more likely to have experienced greater family

disruption.lxxxvi

The findings of a study conducted by Tausig corroborate the results of other studies that

severity of disability, behavioral problems, and stress impact decisions about LTC

placement. Tausig did determine that for older persons with developmental disabilities

(over 21), strains on family relations and perceived burden of care were important

factors in decision-making about residential placement. lxxxvii

Predictors of Home and Community-Based Care Services Use. HCBS care is

viewed by many consumers, their families and advocates as essential to maintaining

independence and social integration.lxxxviii, lxxxix HCBS care is considered to be cost-

effective,xc, xci does not replace sources of informal care,xcii enhances an individual’s

quality of life,xciii and helps individuals retain their autonomy longer, remain healthier,

and recover from illnesses more quickly than those who are institutionalized

prematurely.xciv

5

State Factors. Certain state characteristics are predictive of participation rates in home

and community-based Medicaid waiver programs for the elderly. Per capita income per

1,000 persons age 85 years and older, the number of residential beds, and the number

of Medicare home-health users in a state positively predict use of HCBS, while

increasing numbers of nursing home beds and fewer restrictions on residential beds

predict lower rates of utilization of HCBS.xcv

Race. Patterns of use of long-term HCBS vary with race.xcvi, xcvii, xcviii, xcix Houdec found that

being African-American reduced the likelihood of receiving formal in-home services. For

whites, ADL limitations were positively associated with use of home services, but not for

blacks. Independent activities of daily living (IADL) limitations and incidence of specific

diseases (e.g., diabetes, stroke, Alzheimer’s disease, and cancer) predicted use of

home services for black women, but not black men or whites.ci

Focus groups with black and white elder recipients of LTC services and family and

friends involved in their care yielded data about race-related differences in attitudes

about using services.cii Both blacks and whites expressed concern about being a burden

to a caregiver. However, blacks, but not whites, also talked about their sense of duty to

honor their aging parents’ wishes to not be institutionalized and care for them in return

for the care they received from them as children. Whites more commonly emphasized

the burden of caregiving and the importance of respite care.ciii Blacks were also more

likely to express distrust of direct service, in-home workers and doubt that they would

respect the requests and needs of care recipients. Blacks in contrast to whites were

more likely to voice privacy concerns that made them less likely to use home care

services.civ

Region of Residence. Research findings are mixed on the effect of geography on use

of HCBS. The general trend, however, is that residence in the South predicts lower

utilization rates than living in the Northeast or West,cv and that living in the Northeast or

North Central region increases the probability of use of formal in-home nursing care.cvi

6

Two studies that examined the effects of urban and rural residence on use of HCBS did

not find a significant correlation.cvii, cviii

Consumer and Caregiver Characteristics. An array of consumer and caregiver

characteristics predicts use of HCBS by the elderly, in contrast to using no LTC services

at all. Rising age, as would be expected, increases the use of HCBS,cix including formal

in-home nursing care and going to a senior center.cx Fewer behavior problems,cxi higher

educational attainment, increasing ADL and IADL limitations, large family size, and

being a Medicaid recipient increase the likelihood of participation in HCBS.cxii, cxiii

Caregivers who had depressive symptomscxiv or constrained social and personal

activities as a result of care giving responsibilities were more likely to seek formal

community-based services.cxv

Among elders with functional impairment, predictors of use of formal in-home services

(in contrast to no service use) include increasing age, the number of hours of care by

the primary caregiver, number of household members, being female or African-

American or living in elder housing.cxvi Caregivers who had mobility limitations or had to

rearrange their work schedule to provide care more commonly accessed formal home-

based services.cxvii Female caregivers who helped with bowel or bladder care were more

likely to use formal services than male caregivers.cxviii

Impact of Knowledge on Service Utilization. An early study on knowledge of long-

term care services among the Boston elderly found a lack of awareness of available

LTC services of a large segment of the population. Only 23 percent showed a high level

of knowledge about services.cxix Focus group data from black and white elders and their

friends and family members indicated gaps of knowledge in both racial groups about a

variety of issues related to LTC: service programs, eligibility, financing, and legal and

regulatory matters, such as licensing and monitoring.cxx

Degree of awareness about care options and sources of information about HCBS varied

with race and other socio-demographic characteristics. Chapleskicxxi found that

7

awareness of available services for the elderly was facilitated by being white,

economically advantaged, and educated; and having connections with service agencies

and community organizations, and having transportation and a family network of

moderate size. Being female, poor, black, under-educated, or having few or many family

ties inhibited awareness of services.cxxii,cxxiii Confidence about knowing where to seek

information about LTC services varied with race. While both blacks and whites

participating in focus groups about LTC decision making reported feeling uninformed

about services, only blacks said that they were not sure where to seek information

about LTC options.cxxiv

Silversteincxxv found that elders use a variety of information sources – formal, informal,

and the news media. Formal sources were the least used means of obtaining

information about services, but those who had made contact with service agencies and

other formal sources were the most likely to actually use services.cxxvi However,

individuals whose main source of information was the media had the best overall

knowledge of services.cxxvii Bradleycxxviii found that elders rely on many information

sources including health care providers, friends and relatives, social workers, clergy,

and lawyers.

8

Chapter 2Study Methodology

This chapter describes the methods used in this study to explore factors and issues

affecting decisions about long-term care (LTC) service utilization in Arkansas and to

arrive at policy and program recommendations. This entire study was guided by input

from an advisory working group and carried out by an interdisciplinary research study

team. The study primarily utilized qualitative research methods for reasons described

below. The qualitative data were collected through focus group discussions (FGDs)

with providers of LTC services and through key informant interviews (KIIs) with

consumers of LTC services and others knowledgeable and/or involved in the decision to

select LTC services. The qualitative data were augmented with secondary quantitative

data, in the form of Medicaid data. These data were used to provide a socio-

demographic profile of LTC recipients in Arkansas.

The study team complied with all appropriate standards regarding the use of human

subjects in research. Three separate research protocols covering the secondary data

analysis, the FGDs, and the KIIs were all submitted to and approved by the University of

Arkansas for Medical Sciences’ Institutional Review Board.

An advisory working group (AWG) was formed as the first step in implementing this

study. The members of this group included state policymakers, program managers,

advocates and service providers. A list of the AWG members is included in Appendix B.

The study team relied on the AWG to guide them in selecting the specific populations to

study, criteria for selecting the sample, key areas to include in developing the question

guides, and in interpretation of the findings. In addition, the AWG helped identify data

sources for key variables, facilitated access to secondary data, and assisted in

identifying providers to participate in FGDs. Selected members of the AWG participated

9

in analysis of FGD data and in developing policy recommendations based on findings

from the study.

Input from the AWG was supplemented with information obtained from reviewing the

literature. This review focused on identifying factors shown to be significant

determinants of institutionalization. This information was summarized by two members

of the study team and presented to the AWG to further inform the development of the

list of key variables sought in the secondary data as well as question guides for the

primary data collection and analysis. At the end of the study, both published and

unpublished literature was reviewed again to assist in interpreting findings and

developing recommendations.

Question guides, demographic survey data collection forms and materials, sample

letters and other research documents described in this section are available upon

request.

Conceptual Framework

A conceptual framework was developed by the research team to provide an organizing

illustration of key determinants of utilization documented through the literature review,

discussions with the AWG, and primary and secondary data analyzed in this study.

Factors identified early in the study included demographic characteristics (e.g., age,

gender, race and marital status), personal factors (availability of social support and

service awareness) and system level variables (e.g., scope of services available, the

assessment process, and biases and service awareness of health care providers).

These factors served as the basis for thinking about what influences decisions about

long-term service use of the elderly and adults with physical or developmental

disabilities in Arkansas.

Andersen’s Phase 2 model of health service utilization was used as a starting point to

organize and understand the interactions of these different factors (See Figure 2.1).

This model suggests that a person’s use of health services is a function of factors which

10

can be grouped into three categories (predisposing characteristics, enabling resources,

and need) and their interaction with the health care system. Predisposing

characteristics include such things as demographic characteristics (e.g., gender and

age), social structure or factors that affect a person’s social status (e.g., education,

occupation, and ethnicity/race), and health beliefs and attitudes. Enabling resources

represent those factors which aid or impede a person’s ability to use health services,

either at the community level (e.g., number of health care providers or facilities in an

area) or the personal level (e.g., income, knowledge of services, and health insurance).

The final category is need (e.g., health status). Andersen depicted these three types of

factors as working in a linear fashion and interacting with the health care system to

predict the outcome, which is health services use. In this model, the level of consumer

satisfaction is an outcome of service use. This model built on Andersen’s previous

version by explicitly inserting the health care system, thereby acknowledging the

importance of policies, resources, and organization of the health care system on a

person’s health services utilization and consumer satisfaction.cxxix

Figure 2.1. Andersen’s Phase 2 Model of Health Service Use

The literature reviewed in Chapter 1 supports the use of the model, especially around

the inclusion of the predisposing, enabling and need components of the model. The

11

literature was clear that age, gender, and race (predisposing characteristics) are

explicitly linked to service use. Personal (e.g., caregiver burden) and community-level

resources (e.g., number of nursing home beds) impact decisions about long-term care

service use. Health status (need) is also strongly related to service use. Although the

model was fitting in these ways, the research team felt the need to adapt it to more

closely relate to the focus of the study and our understanding of factors influencing

decisions based on the literature and input from AWG members. See Figure 2.2.

First, even though aspects of consumer satisfaction were raised in the study and are

important, these were not the primary focus of this study and were outside its scope.

Therefore, this aspect of Andersen’s model is de-emphasized in the diagram in Figure

2.2. Rather, the research team was primarily interested in factors influencing what of

long-term care services, if available, were used, that is, institutional care or home- and

community-based services (HCBS). The research team modified the model by explicitly

marking the decision point separating institutional care and HCBS. Finally, the research

team recognized the unique importance of informal caregivers as enabling resources for

persons making decisions about LTC need and type of services to use.cxxx, cxxxi

A caregiver’s ability to be an enabling resource for the elderly or disabled person is

affected by his/her own predisposing characteristics, enabling resources, and need. The

12

Figure 2.2. Conceptual Framework, modified from Andersen’s Phase 2 Model of Health Service Use

role of the caregiver has, therefore, been added to the model to emphasize this

relationship.

Primary Qualitative Data

Populations: The populations focused on in primary data collection included three

groups eligible for specific Medicaid-funded LTC services in Arkansas: elderly (65

years and older), non-elderly adults with physical disabilities (21 to 64 years with a

physical disability), and adults with developmental disabilities (18 years and above).

These subpopulations were further differentiated to include within each group, those

residing in an institution (e.g., nursing home or human development center) and those

receiving HCBS through the ElderChoices (EC), Alternatives (ALT) or Developmentally

Disabled (DD) Waiver, respectively.

Why Qualitative Methods were Selected. The main questions of this study were to

learn why recipients of formal LTC use the services they do and to determine whether

interventions are needed to assist consumers and others involved in obtaining the

services they desire. In order to identify potential points of intervention, it is essential to

first understand the path followed to reach a decision. While previous studies provide

data on the major determinants of service use, information is lacking to help identify

where and what interventions in the decision-making path might be most effective. In

order to answer these questions, one needs to better understand who is involved in

making the decisions and how they are being made. Further, making a decision about

LTC is a complex process, often drawn out over time, and usually involving multiple

factors that have to be weighed in the context of varying circumstances and concerns.

Because of the lack of previous research on these specific aspects of the LTC decision-

making process and the complexity of issues involved, qualitative methods were chosen

as the most appropriate data collection method.

13

Focus Groups: Focus group discussions were chosen as a method for hearing the

perspectives of providers regarding the decision-making process of consumers, but also

to help inform us about what we might need to look for in the KIIs to follow. Open-

ended question guides were used in order to not bias or constrain providers’ accounts

of experiences, observations, beliefs and attitudes regarding consumer decision

making.

Four FGDs were held with professionals knowledgeable of the LTC decision-making

process. Since factors that affect decisions and/or the process of decision-making

regarding utilization of LTC services may differ by each of the three subpopulations, the

FGDs separately targeted professionals working with these three subpopulations.

Specifically, the research team held one FGD with professionals working with adults

with developmental disabilities, one with professionals working with adults with physical

disabilities, and two with professionals working with the elderly. Members of the

research team and the Advisory Working Group provided names of persons who would

be potential FGD participants. The research team contacted these individuals to invite

them to participate. Those willing to attend a focus group session were then mailed a

confirmation letter.

Table 2.1 lists the dates of the FGDs and the number of attendees. All FGDs were

conducted in a research facility in Little Rock, Arkansas. Three participants joined the

FGDs by telephone via a speaker phone system. At the beginning of each session, a

facilitator and co-facilitator gave participants an opportunity to ask questions regarding

the research project, then asked them to review and sign the written consent form.

Those participating via speaker phone faxed their signed consent forms to the study

team prior to the focus group session. The consent form described the project and its

purpose, the data collection process, and ensured confidentiality of responses.

Participants were introduced to other members of the research team and were informed

that these individuals would be witnessing the session from behind a two-way mirror in

14

an adjacent room. In addition, they were informed that the session was audio-recorded

for later transcription and analysis.

Table 2.1. Focus Groups Attendees Focus Group

Date Number of Attendees

Subpopulation Focus

1 09/09/03 9 Elderly

2 09/09/03 8 Elderly

3 09/18/03 8 Adults with Physical Disabilities

4 09/18/03 6 Adults with Developmental Disabilities

After introductory information was provided and signed consent forms were completed,

the facilitator and co-facilitator guided the group in a discussion using developed

research questions. The sessions lasted between 1.5 and 2 hours.

At the conclusion of each FGD, participants were asked to complete a 14-question

survey to collect participant profile information. Each was given $70 to compensate for

time and mileage.

Audiotapes of the FGDs were transcribed by a hired transcriptionist who provided the

research team with an MS Word file of each discussion. Data collected from the FGDs,

including signed consent forms, completed participant survey forms, audio recordings,

and transcripts were maintained in a secured location in the offices of the research

team. Only members of the research team (and the hired transcriptionist who agreed to

adhere to appropriate confidentiality standards) have had access to any of these data.

At a future time when the principal investigator of this study determines that these data

are of no further use, the data will be destroyed.

15

Facilitator Guide: The following main question and probing questions guided the

facilitator and co-facilitator in each of the provider FGDs:

Main Question: What determines whether a person utilizes a [insert appropriate institutional service – HDC or nursing home] or a [insert appropriate HCBS waiver option – ElderChoices, Alternatives, or the DD waiver]?

Probing Questions:1. What characteristics of a patient, caregiver, or the home setting influence

whether one enters into an institution or not?2. What characteristics of a service provider influence whether one enters into

an institution or not? 3. How often does provider availability become a factor in the services chosen

by patients and family caregivers? How and for what services?4. How much do patients and family caregivers know about the different

community services available to them? 5. How accurate is this knowledge? How did they learn it? Where do patients

and family get the information they use to decide between various care choices? What role do you play in the decision-making process?

Focus Group Data Analysis: The data collected from the participant survey forms

were tabulated for simple descriptive analysis of participant characteristics.

The analysis of the FGD transcripts initially was somewhat unstructured to maximize

discovery of interpretations that might otherwise be suppressed by using pre-defined

categories. The process was basically in three steps. In the first, an adaptation of the

editing style of analysis, as described by Miller and Crabtree,cxxxii was used to develop a

coding template.cxxxiii Three members of the research team reviewed the transcripts

making notes in the margins of the text, which were then used to develop a proposed

coding template. The coding template was then discussed with other members of the

research team and discussed and approved by the AWG. The template was organized

into the following five main categories, which correlated to frequency of comments

made in reference to each by FGD participants: individual, social support, provider,

system, and community. (See Appendix C for fuller description of the coding scheme.)

16

The second step of analysis involved attempting to code the transcripts using the

template. For each FGD, an AWG member with expertise relevant to a particular

subpopulation (i.e., elderly, non-elderly adults with physical disability, and non-elderly

adults with developmental disability) and four research team members independently

reviewed the transcripts using the template. The AWG members offered comments and

suggestions about the template’s suitability for a subpopulation, and both contributed

valuable contextual references to aid interpretation of comments made during the focus

groups. Through the coding process and related team discussions, a pattern emerged

consisting of the following four main domains which the team felt would serve as a more

useful framework for summarizing the data:

1. Timing, planning, players involved in the decision

2. Patient needs and characteristics (including social support systems needs

met or not met by existing services)

3. Past experiences and perceptions of services of patients and others

4. Access to information about past and current services

In the third step of the analysis, these four domains were used to code and summarize

the data. At this point, one member of the research team used this revised, simpler

template to systematically review the transcripts and code the text. This process then

allowed the team to identify key findings related to these four domains. For each

transcript, this researcher abstracted sections of text relevant to each of the domains

and organized them accordingly in a summary document for each population. These

four domains informed the design of the Key Informant Interview Question Guide and

influenced further analysis of the qualitative data.

Key Informant Interviews: Key informant interviews were used to obtain information

from consumers and others involved in the decision-making process. This mode was

chosen because we wanted to understand interactions between needs, beliefs, and

information in the decision-making process. Once again, these interviews were fairly

open-ended, beginning by encouraging story-tellingcxxxiv by the respondent with a grand

17

tour question: ”There are lots of reasons why someone selects a long-term care

service. I am interested in hearing, in your own words, about the most important factors

in the decision about your [or name of long-term care consumer] care, what happened

that led to the decision for you [or name of long-term care consumer], to go in/go on

[insert name of long-term care service or facility.] Can you tell me about that?”

However, in contrast to the FGDs, a more semi-structured question guidecxxxv was used

to ensure that the four domains identified in the FGD analysis were discussed during

the interview.

Key informant interviews were held with LTC consumers and others whom they

identified as being involved in the decisions about the LTC services they were using.

These individuals included relatives, spouses, friends, health care providers and social

service workers (e.g., case managers).

As noted above, there were three subpopulations of interest in this research project:

elderly (65 years and older), non-elderly adults with physical disabilities (21 to 64 years

with a physical disability), and adults with developmental disabilities (18 years and older

with a developmental disability). A sampling strategy was developed by the research

study team and the AWG to guide identification and selection of participants. For each

subpopulation, an index case (i.e., the consumer of the LTC service) and up to two

additional persons who were knowledgeable or involved in the decision to select the

LTC service were targeted for the KIIs. The research study team sought to conduct

interviews with a maximum of 12 consumers (index cases) for each of the three

subpopulations. Additionally, during the interview with the consumer (or the consumer’s

legal guardian), up to two additional respondents knowledgeable or involved in the

decision about LTC services were identified as possible key informants. No more than

30 interviews were to be conducted per subpopulation group. In addition, eligibility

criteria for the index cases of each subpopulation were developed, as described below.

18

Elderly. For these index cases, consumers had to be at least 65 years old, at a Level

III skill/disability level, (i.e., the highest level of functioning eligible for LTC services), and

be receiving Medicaid-supported LTC services. Additionally, when possible, the

researchers attempted to balance the key informant sample on demographic

characteristics such as marital status, gender, service type (institutional or HCBS), race

(African American or white), and region (urban or rural). Where possible, an even mix of

index cases receiving HCBS and institutional care was sought. [Note: The AWG

advised the researchers to target this disability level, as they represent a substantial

number of those institutionalized, and are the most likely to thrive in HCBS care

settings.]

Adults with Physical Disabilities. For these index cases, consumers had to be

between 21 and 64 years, be at a Level III skill/ disability level, (i.e., the highest level of

functioning eligible for LTC services), and be receiving Medicaid-supported LTC

services. Additionally, when possible, the researchers attempted to balance the key

informant sample on demographic characteristics such as marital status, gender,

service type (institutional or HCBS), race (African-American or white), and region (urban

or rural). Where possible, an even mix of index cases receiving HCBS and institutional

care was sought. [Note: The AWG advised the researchers to target this disability level

as they represent a substantial number of those institutionalized and are the most likely

to thrive in HCBS settings.]

Adults with Developmental Disabilities. For this subpopulation, the consumers had to

be 18 years or older, to have recently begun receiving the current designated service,

and to have a mild to moderate disability skill level, (i.e., the highest level of functioning

eligible for LTC services), and be receiving Medicaid-supported LTC services. The

distribution of race, marital status, and gender of consumers in this subpopulation was

determined based on the location of services around the state and the availability of

consumers that meet the other eligibility criteria. Where possible, an even mix of index

cases receiving HCBS and institutional care was sought.

19

Chart 2.1. Patient Identification, Consent & Interview Process

STEP 5. DHS Program Staff / DHS Provider Representative obtains written Authorization for UAMS interviewer to contact patient/ legal guardian. DHS Program staff sends signed Authorization forms to DHS Mgmt

STEP 2. DHS Mgmt conducts database search for study eligible patients & enters eligible patients names on top portion of Authorization to Release Health (Contact) Information Form

STEP 3. DHS Mgmt forwards Authorization to Release Health Information with identified patients to DHS Program Staff /DHS Provider Representative

STEP 4.DHS Program Staff assesses patient’s competency to provide informed consent in accordance with UAMS IRB Cognitive Impairment Determination Algorithm

STEP 6. DHS Mgmt forwards signed & completed Authorization forms to UAMS Research Team

STEP 7. UAMS interviewer contacts respondent via phone using information on authorization form to schedule interview

STEP 8. Interviewer obtains written consent do conduct interview

STEP 9. Interviewer obtains respondent’s signature on HIPAA Form

STEP 10. Interview is conducted

STEP 11. Interviewer obtains patient’s written Authorization to contact additional people for interview, and repeats STEPS 7 - 10

STEP 1. UAMS Research Team provides DHS Management with Study Eligibility Criteria and Authorization to Release Health (Contact) Information Form

STEP 5. DHS Program Staff / DHS Provider Representative obtains written Authorization for UAMS interviewer to contact patient/ legal guardian. DHS Program staff sends signed Authorization forms to DHS Mgmt

STEP 2. DHS Mgmt conducts database search for study eligible patients & enters eligible patients names on top portion of Authorization to Release Health (Contact) Information Form

STEP 3. DHS Mgmt forwards Authorization to Release Health Information with identified patients to DHS Program Staff /DHS Provider Representative

STEP 4.DHS Program Staff assesses patient’s competency to provide informed consent in accordance with UAMS IRB Cognitive Impairment Determination Algorithm

STEP 6. DHS Mgmt forwards signed & completed Authorization forms to UAMS Research Team

STEP 7. UAMS interviewer contacts respondent via phone using information on authorization form to schedule interview

STEP 8. Interviewer obtains written consent do conduct interview

STEP 9. Interviewer obtains respondent’s signature on HIPAA Form

STEP 10. Interview is conducted

STEP 11. Interviewer obtains patient’s written Authorization to contact additional people for interview, and repeats STEPS 7 - 10

STEP 1. UAMS Research Team provides DHS Management with Study Eligibility Criteria and Authorization to Release Health (Contact) Information Form

Sample Selection and Process for Contacting Respondents

Because the respondent selection strategy was complex, the recruitment of participants

for key informant interviews was an involved process. The process for identifying

consumers, obtaining consent to contact them, obtaining informed interview consent

and HIPAA clearance, as well as the interview process, is described below and

illustrated by a flow chart (See Chart 2.1).

To identify study-eligible

respondents, required

characteristics of the sample

group were submitted to

Arkansas Department of

Human Services (DHS)

managers, identified by the

AWG, who are responsible

for overseeing eligibility for

LTC and disability services.

DHS management conducted

a search of eligibility records

(electronic databases and

paper files) to identify

individuals who matched

study criteria. Once cases

were identified, DHS

management contacted the

DHS program staff (for consumers who are receiving HCBS) or the DHS provider

representative (for those consumers who are institutionalized in a nursing home or

Human Development Center, HDC) to inform them of the study and provide them with

the list of potential respondents. For potential study participants who did not have a

20

legal guardian, the program staff or provider representative assessed cognitive level to

determine whether the potential respondent was able to participate in the interview. If a

person was deemed too cognitively impaired to participate, he/she was excluded from

the study. All others received information about the study and were asked to complete

an Authorization to Release Health Information Form. For potential study participants

who did have a legal guardian, the program staff or provider representative contacted

the guardian to describe the study, have the guardian determine the cognitive ability of

the potential study participant, and seek permission for the consumer to participate by

having the legal guardian sign an Authorization to Release Health Information Form. In

cases where the recipient of services was deemed too impaired to participate, his/her

legal guardian was allowed to participate on the consumer’s behalf. For individuals not

completing an Authorization to Release Health Information Form, their information was

not released to the study team, and they were excluded from the study.

When a signed Authorization to Release Health Information Form was received by the

study team, a researcher contacted the individual to describe the study and schedule

the in-person interview. Individuals who had changed their minds and were no longer

willing to be interviewed were excluded from the study.

Interviewers were trained and supervised throughout the data collection period by the

director of data collection. Interviewer training included general interviewing techniques,

qualitative data collection methods, question guide administration, and case assignment

and data processing procedures. In all cases, interviewers and respondents were

matched on race, i.e., all white respondents were interviewed by a white interviewer,

and all African-American respondents were interviewed by an African-American

interviewer.

During the in-person interview process, trained interviewers reviewed the study goals,

obtained respondent’s signature on the interview consent form and the HIPAA

authorization form, and addressed any questions or concerns mentioned. Guided by a

21

semi-structured questionnaire, the interviewer then led a discussion about factors

associated with the decision about LTC services. The questionnaire contained one

“grand tour” question and a series of probes that were used if the information pertaining

to all study domains did not come up naturally. The interviews concluded with several

standardized questions about demographics and the request to contact others who may

have been knowledgeable of or involved in decision making, about participation in the

study. If additional persons were identified, the respondent completed and signed an

Authorization to Contact Additional Persons Form. At the conclusion, respondents were

given $50 in cash as compensation for their time to participate. The interviews were

tape recorded and later transcribed verbatim for analysis purposes.

Key Informant Interview Data Analysis. Transcripts of the KIIs were initially reviewed

by one member of the research team, who developed a summary for each interview,

using the key questions and four main domains of inquiry (described above, in Focus

Group Data Analysis) as a framework. Each summary began with an overview of the

respondent’s story, supported by text abstracted from the transcript. For each domain,

the same process was followed. These summaries reduced and organized the

voluminous amount of transcript datacxxxvi into a format that allowed the research team

and AWG to identify themes and compare them with findings from the FGDs. This

review resulted in a listing of preliminary key findings as well as supporting quotes for

each.

Data from the summaries were then organized in a matrix.cxxxvii Data for every case,

relative to study domains and KII questions, were displayed. The matrix made it

possible to ascertain, to the extent that data were available, the number of interviews

that supported each of the preliminary key findings. Subsequently, other members of

the research team served as “secondary readers” to “audit” findings and determinations

made by the primary analyst.cxxxviii This was done by having them review a sample of the

transcripts and abstracts, against the findings matrix. If conflicting findings were noted

by reviewers differences were discussed and resolved. Finally, key members of the

22

research team reached consensus on key findings, over-arching themes, and identified

relevant quotes to highlight the key findings.

Reporting of Results. Results presented in this report focus on key findings that

emerged from both the FGDs and the KIIs. As described above, KII findings were

quantified to ascertain frequencies and patterns of response. However, inferences based

on percentages and other numeric values should be made with great caution in light of the

fact that the study sample is non-random and small; therefore the data are not appropriate

for statistical analysis. With that caveat, the key used to translate numbers into

descriptive, qualitative terms is presented in Table 2.2. These terms are used to describe

the key findings in Chapters 6, 7 and 8.

Table 2.2. Descriptive Terms and Percent with FindingsQualitative term: Percent meeting description:Almost all 75% or moreMost 50-74%Often, many 25-49%Some, a number of, sometimes 15-24%A few <15%

To protect the identity of study respondents, gender is concealed by random

assignment of gender-specific pronouns and pseudonyms in quotes and other text

describing cases.

Development of Recommendations. Recommendations were made to address

issues raised by key findings. These recommendations were developed by reviewing

published and unpublished literature (reports and other unpublished documents),

through personal communications with program managers, and with input from the

AWG.

Secondary Data Sources

The purpose of the secondary data analysis was to examine characteristics and enrollment

patterns of the Medicaid population receiving services to meet their LTC needs. Based on the

23

guidance from the AWG, the Medicaid populations for which data were analyzed included adult

residents of nursing homes or human development centers, and adults enrolled in any of these

waivers: ElderChoices, Alternatives, or Developmental Disabilities. Five years of data were

obtained covering state fiscal years 1998-2002. The following describes the process carried out

to identify and obtain appropriate data sources for the secondary analysis.

Table 2.3. Data Source Matrix

 

DHS Form 703*

Care plans

(AAS9503)DAAS

WaiversDHS 704

DHS MMIS ACES

Area Agency

on Aging**

ADH Home Health PC-6

Date of Birth YES YES YES YES YES YES YESRace NO NO NO YES YES YES YESGender YES NO NO YES YES YES YESHome County YES YES YES YES YES YES YESMarital Status YES NO NO NO NO YES YESMedicaid Number YES YES YES YES YES YES YESEligibility Category NO NO NO YES YES YES NOMedicare Number NO NO NO YES YES YES NODiagnosis YES YES NO YES NO YES YESDisability Level YES*** YES*** YES YES*** YES YES NOProvider Type NO YES NO YES NO NO NODate of Eligibility NO YES NO YES YES NO YESPrior LTC YES NO NO YES YES NO NOEducation NO NO NO NO NO YES NO

Notes: *DHS Form 703 used by nursing homes, Human Development Centers, and Intermediate Care Facilities/Mentally Retarded. **Included forms from Northwest Arkansas, Northeast Arkansas, Central Arkansas and White River Area Agencies on Aging. ***Only available Assisted Living Waiver.

The study team collectively and individually revisited the key questions that were to be

answered by the collecting, mining and reporting of secondary data. Various secondary

data client intake forms, in current use across multiple service providers, were reviewed.

The primary intent of this effort was to identify key information looking for best-fit

variables, common variables, and what and where data were stored. Where possible,

determination was made on whether these data were stored in electronic (database) or

non-electronic (paper) format. Due to time and resource constraints, the study team

determined that only relevant data available in electronic format would be used for this

analysis. This review resulted in the development of a data source matrix. See Table

2.3. This matrix shows which data elements of interest were available on each type of

application form or computerized database. The matrix indicated that most of the

24

desired data elements were available in electronic format from the Arkansas

Department of Human Services’ (DHS) Medicaid Management Information System

(MMIS) and the state Arkansas Client Eligibility System (ACES) databases. Even

though marital status, prior LTC service usage, and educational level were all variables

of interest, they were not available for all subpopulations and therefore were not

included in any of the analyses.

Other activities related to secondary data included client case closure reviews,

application for service denials, mapping of state and regional LTC services,

identification of services, and client use patterns. The team also reviewed previously

conducted and/or current LTC studies in Arkansas to determine if some of these data

could be used. This included reviewing efforts by the Arkansas Foundation for Medical

Care (AFMC) to collect, store and report secondary data, the federal Minimum Data Set

(MDS) Project, and the federal Programs for All-Inclusive Care for the Elderly (PACE).

Formal database extraction specifications were then developed, documented, approved

and issued for use with the State of Arkansas for applicable Medicaid program data.

Meetings were held with representatives of DHS, Division of Medical Services (DMS)

and Department of Aging and Adult Services (DAAS) to obtain approval for the data pull

and the timeline for completion.

Medicaid data were extracted from the Arkansas State MMIS and the ACES databases

for importing, cleaning, editing and reporting by the study team. Other data sources

used on an as-need basis to fully complement this data pull included Arkansas

Department of Human Services Annual Statistical Reports, the Olmstead Plan in

Arkansas Report, Arkansas Area on Aging (AAA) systems, National Institute of Health

(NIH) Databases, Arkansas Foundation for Medical Care (AFMC) data, U.S. Census

Bureau, and other related data sources.

25

Five years (SFY1998 – SFY2003) of Medicaid data were extracted. After extraction,

secondary data were evaluated first or concurrently where possible, to help set the

stage for determining primary data collection requirements. Efforts were made to

ensure that new secondary data reports were reconciled to the original proposal reports

and other published sources to ensure maximum accuracy and reliability. Standard

accuracy and data reasonableness checks were incorporated.

Data Analysis. The research team used several methods to analyze the secondary

data. For the assessment of the availability of LTC services across the state, simple

mapping techniques were used to look for geographic availability and clustering at the

county level. For the Medicaid new enrollment data, descriptive statistics (e.g., mean,

median, range, and standard deviation) were calculated to understand the central

tendencies of the data. Rates were calculated using U.S. Census Bureau data to

assess utilization patterns. For recipient data obtained from annual statistical reports,

descriptive statistics were also used to understand the central tendencies of the data.

Data were examined for seasonal patterns. New enrollment data were compared to

actual recipient data. Finally, Z-scores were used to determine significant geographical

differences in enrollment to the LTC services.

26

Chapter 3Availability of Selected Medicaid Long-term Care Services in

Arkansas

This chapter describes some of the long-term care services available through the

Medicaid program in Arkansas. Specifically, it describes the scope of services and

eligibility criteria for three home and community-based waiver services and describes

available institutional services. In addition, the chapter describes the geographic

distribution of the services about the state.

Arkansas offers a mix of institutional and LTC options for Medicaid beneficiaries. The

Department of Human Services (DHS) finances institutional care through the Medicaid

State Plan. A division of the DHS, the Division of Aging and Adult Services, operates a

number of waiver programs to offer home- and community-based services (HCBS) as

an alternative to institutional care. Of interest to this particular study were the

ElderChoices Waiver, the Alternatives Waiver, and the Developmental Disabilities

Waiver. The corresponding institutional care settings for these three waiver programs

are nursing homes and human development centers (HDCs). The following provides

eligibility criteria and services available through these LTC programs.

In 1991, the ElderChoices Waiver was approved by the Centers for Medicaid and

Medicaid Services (CMS) to serve persons aged 60 years and older who were

financially and functionally eligible for admission to a nursing home. Through this

program, consumers may receive homemaker, chore, home-delivered meals, personal

emergency response system, both social and therapeutic adult day care services, adult

foster care, and respite.cxxxix A registered nurse conducts a comprehensive assessment

and develops a care plan for each recipient to ensure that appropriate medical and

social services are provided to address the recipient’s individual needs.cxl Enrollment to

the waiver is limited to 9,000 persons.

The Arkansas Division of Aging and Adult Services was granted approval from the CMS

in 1997 to operate the Alternatives Waiver Program. This waiver program targets adults

(21-64 years) with physical disabilities who are eligible for admission to a nursing home

(meeting both the income and functional eligibility criteria). Services include

environmental modifications to a residence and attendant care to assist with activities of

daily living. The service needs are laid out in an individualized Plan of Care developed

by an assigned counselor. The counselor also assesses the consumer’s level of

satisfaction with the services received and assists in the annual re-assessment process.

Persons eligible to serve as an attendant must meet certain criteria and must be

enrolled as a Medicaid provider.cxli Through this program, up to 1,300 individuals can

be served.

The Developmental Disabilities (DD) Waiver was authorized by CMS to serve persons

with development disabilities who are eligible for institutional care. Services available

through the DD Waiver include crisis intervention and respite services, consultation and

case management, certain medical supplies, environmental modification, supportive

employment assistance, and integrated supports services.cxlii

Persons with developmental disabilities who are under the age of 65 years may receive

institutional care at one of six HDCs located around the state (Conway, Faulkner

County; Alexander, Saline County; Arkadelphia, Clarke County; Jonesboro, Craighead

County; Booneville, Logan County; and Warren, Bradley County). These facilities,

which can serve up to 1,313 persons, offer residential care, education and training,

socialization, recreation, and appropriate therapeutic and medical services.cxliii As of

January 2005, there were an estimated 180 persons on the waiting list for placement in

an HDC.

As of January 2005, there were 25,261 licensed nursing home beds in the state to

provide institutional LTC for eligible persons.cxliv Medicaid will cover nursing home care

for persons who meet functional and financial eligibility. To be financially eligible, a

person must have an income of $1,656 or less a month and have no more than $3,000

in assets (not counting a home, car or burial expenses). If a person is married when

applying for nursing home care, he or she is regarded as separated. Only the

applicant’s income is counted toward the income limit but the couple’s assets must be

divided based on prescribed rules.cxlv

Distribution of Medicaid Long-Term Care Services

The research team reviewed the availability of various Medicaid funded LTC services

across the state. The assessment was divided into two service types: institutional care

and HCBS.

Institutional Care Services. Institutional care was defined as nursing home facilities

and HDCs (or intermediate care facility services for the mentally retarded and

developmentally disabled [ICF-MR]). Since the 1960s, Arkansas has used permits of

approval (POAs) to manage the geographic distribution of health care services and

facilities, including nursing home and ICF-MR beds. The purpose of POAs around the

country and in Arkansas have been to ensure adequate geographic distribution of

services and facilities, to prevent potential investment in unnecessary (but expensive)

equipment and facilities, and to ensure quality.cxlvi Permits are issued, denied, or

withdrawn based on a determination of need using methodologies laid out in the POA

Rulebook.cxlvii

There are currently 1,313 beds in the six HDCs located around the state:cxlviii Conway,

Faulkner County (632 beds); Alexander, Saline County (145 beds); Arkadelphia, Clark

County (154 beds), Jonesboro, Craighead County (128 beds); Booneville, Logan

County (174 beds), and Warren, Bradley County (80 beds). DHS staff report a waiting

list for persons to enter an HDC. One list is maintained for all six HDCs. As of January

2005, there were 180 persons on the waiting list.cxlix

As of January 2005, there were 24,820 licensed nursing home beds in the state,cl down

just slightly (1.3%) from the number of licensed nursing home beds in November 2002.

In SFY 2001, the county average occupancy rate was 75%. Newton County had the

highest occupancy rate (98%) while Searcy County had the lowest (45%).cli

Using the number of licensed nursing home beds in SFY2001clii and 2000 US Census

population figures for persons 65 years and older by county in Arkansas, a county bed

rate (nursing home beds per 1,000 persons over 64 years) was calculated. The average

county bed rate was 76.1, with a minimum bed rate of 43 (Benton County) and a

maximum bed rate of 181.9 (Howard County).2

The rates were sorted into quartiles. See Map 3.1. Nearly two-thirds (63% or 47

2 The standard deviation of the bed rates was 24.56.

Map 3.1. County Nursing Home Bed Rate, SFY 2001

Data Sources: US Census Data and Arkansas Health Services Permit Agency

counties) of the counties had a bed rate in the lowest quartile, which ranged from 43 to

77 beds per 1,000 persons 65 years and older in the county. One third of the counties

(25) had a bed rate in the second lowest quartile, which ranged from 78 to 113. Only

one county, Nevada, had a bed rate in the third quartile, which ranged from 114-149.

Two counties, Dallas and Howard, had bed rates in the highest quartile, which ranged

from 150 to 185.

The state does not maintain a waiting list for nursing home beds. Based on the

occupancy rate analysis, there seem to be available beds in each of the 75 counties.

However, individual nursing home facilities may maintain a list for persons desiring to

enter their particular facility.

Home and Community-Based Services. For purposes of this study, HCBS were

defined as those that were provided under three waiver programs including:

ElderChoices, Alternatives, and the Developmental Disabilities (DD) Waiver. See

Chapter 1 for a list of services available under each of these programs. The

assessment of available HCBS was more difficult than the assessment of available

institutional care. The capacity of some services, such as adult day care and adult day

health care, could be determined. However, in most cases, lists of providers of services

were available but not an indication of their capacity or caseload limits. It was beyond

the scope of this study to contact all the HCBS providers to determine their capacity or

caseload limit. This analysis is therefore limited to available data.

All counties in Arkansas have at least one ElderChoices provider that offers most of the

covered ElderChoices services to county residents. The table below, Table 3.1,

provides the average number and range of providers by service type across all

counties. However, this table represents the number of providers and not their capacity

to serve. The most limited services are adult day care and adult day health care

services. Thirty counties do not have adult day care, and 57 counties do not have adult

day health care services, with twenty-six having neither.3 Chore services are not

available in five counties (Chicot, Lee, Newton, Phillips and Searcy).

Table 3.1. ElderChoices Service Providers By County, 2003PROVIDERS BY COUNTY

ADC ADHC Chore HDM Home-maker

PC PERS Respite TCM

Average1.2 .29 1.7 2.21 5.7 5.2 11.12 6.3 4.3

Minimum 0 0 0 1 2 2 7 3 2Maximum 18 4 6 8 32 18 24 38 14Notes: ADC= Adult Day Care, ADHC=Adult Day Health Care, HDM=home delivered meals, PC= personal care, PERS=personal emergency response services, TCM=targeted case management.Data Source: 2003 ElderChoices Provider List obtained from DAAS, DHS.

The Alternatives Waiver program provides counseling/case management, home

modification, and attendant services. To receive certification from the Division of Adult

and Aging Services (DAAS) to provide home modification services, organizations and/or

businesses must hold valid and appropriate businesses licenses, and be knowledgeable

of state and local contractor codes and the provisions of the Americans with Disabilities

Act Accessibility Guidelines. In addition to these services, Alternatives provides

attendant services. Since the Alternatives Waiver is a consumer-directed program,

adults with physical disabilities are able to hire their own attendants, who must meet

DAAS certification criteria and become a Medicaid provider. It was, therefore, not

possible to assess the distribution of attendants across the state.

The Developmental Disabilities (DD) Waiver provides a wide range of services to

enable persons with developmental disabilities to remain in the community. The

Medicaid provider manual lists 13 services provided through this waiver: case

management, respite care, supportive living, community experiences, consultation

services, waiver coordination, non-medical transportation, supportive employment

services, adaptive equipment, environmental modifications, supplement support

services, crisis intervention services, and crisis center. A DD waiver provider list

obtained from the Division of Developmental Disabilities indicated that all counties had

3 Counties without adult day care or adult day health care were Carroll, Chicot, Clay, Crawford, Franklin, Fulton, Garland, Hempstead, Howard, Izard, Jackson, Lafayette, Lincoln, Logan, Madison, Marion, Montgomery, Nevada, Newton, Pike, Polk, Randolph, Scott, Sevier, Sharp, and Stone.

services providers (based in the county or willing to serve the county but based

elsewhere) offering adaptive equipment, case management, consultation, crisis centers,

crisis intervention, integrated support, specialized medical supplies and vocational

maintenance. (Note: respite, supportive living, community experience, waiver

coordination, and transportation are included the services available through integrated

support.) Although the list indicates the existence of a service provider offering all the

waiver services, it does not allow for the analysis of the capacity of the provider to serve

the community (i.e., the number of persons they can actually serve). It was beyond the

scope of this study to conduct an assessment of this nature.

Chapter 4Selected Characteristics and Enrollment Patterns of Arkansas’

Medicaid Long-Term Care Beneficiaries

This chapter describes selected characteristics of Medicaid long-term care (LTC)

beneficiaries and patterns of enrollment according to the types of services received. The

findings reported are based on secondary data sources which are described in more

detail in Chapter 2 of this report.

Recipients of Long-Term Care Services

The research team reviewed existing data on recipients of LTC services received

through institutions (nursing homes and human development centers [HDCs]),

ElderChoices, Alternatives, and the Developmental Disabilities (DD) Waiver between

the years of SFY 1998 and SFY 2002.

Institutional Care. DHS data show that between 1998 and 2002 the number of

individuals in “private nursing homes” fell from 14,445 in SFY 1998 to 12,898 in

SFY2002.cliii Private nursing homes exclude the state operated AR Health Center,

HDCs, Pediatric Facilities and 10 Bed ICF-MRs. These figures represent the average

census at the end of each month, referred to as the midnight census.

Data from the DHS annual statistical reports from SFY1998 to SFY2002 show there

was a consistent proportion of males (31%) and females (69%). There was also a

consistent proportion of African-American (17%) and white (79%) nursing home

residents. cliv,clv,clvi,clvii,

ElderChoices. Between SFY1998 and 2002, an average of 8,228 persons per year

received home- and community-based services (HCBS) through the ElderChoices

34

Program. The annual number of recipients increased each year from SFY 1998 to SFY

2001. However, in SFY2002, the number of recipients had declined 6% from the

previous year to 8,102. See Chart 4.1. Between SFY1998 and SFY2002, the average

cost per recipient for the program has steadily increased. In SFY1998, the average cost

per recipient was $3,058. By SFY2002, the average cost per recipient was $4,075.clviii

Alternatives. Between SFY1998 and SFY2002, the number of persons receiving

services through the Alternatives Waiver program increased from 125 to 918, more than

a seven fold increase. See Chart 4.1. The average cost per recipient for the program

increased from $8,019 in SFY1998 to $12,350 in SFY 1999. From SFY1999 to

SFY2002, the average cost per recipient remained fairly stable.clix

DD Waiver. Between SFY1998 and SFY2002, there was a steady increase in the

number of persons receiving services through the DD Waiver. In SFY1998, just over

1,000 persons received services. By SFY2002, more than three times (3,423) that many

persons were receiving services. See Chart 4.1. During that same period, the average

cost per recipient remained fairly stable, with the per year average ranging between

$15,565 and $19,418.clx

35

Chart 4.1. Recipients of Home/Community-Based Long-Term Care, SFY 1998-2002

7804

8193 8439 8602

8102

125282

461 691 918

3423

29712443

1522

1006

0

1000

2000

3000

4000

5000

6000

7000

8000

9000

10000

1998 1999 2000 2001 2002

State Fiscal Years

Rec

ipie

nts

ElderChoices Alternatives DD Waiver

New Enrollees to Various Long-Term Care Services

This analysis examines enrollment patterns and characteristics of persons who were

newly enrolled for Medicaid-funded HCBS (ElderChoices, Alternatives and

Development Disabilities (DD) Waiver) and institutional (nursing home and HDC) LTC

services. Data by quarter for State Fiscal Years (SFY) 1998 through 2002 were

reviewed.

Table 4.1 shows the number of

persons who enrolled by quarter over

the five year period for the three waiver

programs and institutional services. It

is important to note that the totals

between programs may contain

duplicates although the totals for a

single program over the five years

reviewed do not. In other words, if a

person enrolled in ElderChoices in

Quarter 1 of 1998 and for institutional

care in the same quarter, he or she is

counted in both programs’ quarter

totals. Likewise, if a person enrolled

for ElderChoices in Quarter 1 of 1998

and then drops out of the program but

enrollees again in Quarter 1 of 2000,

he or she is only counted in the first

quarter he or she first enrollees.

The mean quarterly new enrollment for the ElderChoices Waiver was 530, the median

was 546, and the standard deviation was 80. The mean quarterly new enrollment for

Table 4.1. Number of New Enrollees by Program by Quarter, SFY 1998-2002SFY Quarter EC ALT DDW INST

1998

1.1 475 20 33 8311.2 424 64 21 8451.3 605 37 33 998

1.4 602 29 331 1130

1999

2.1 556 45 189 11842.2 464 31 71 11022.3 557 66 43 1250

2.4 686 35 57 1183

2000

3.1 556 67 84 12553.2 535 39 72 11183.3 593 57 104 1212

3.4 637 59 83 1212

2001

4.1 596 75 63 11774.2 443 74 30 10644.3 531 76 34 1335

4.4 559 107 47 1229

2002

5.1 483 97 59 12875.2 492 98 39 11405.3 388 91 48 1249

5.4 416 66 27 1244Source: Arkansas MMIS. Notes: Totals are not unduplicated between programs and quarters. EC= ElderChoices, ALT=Alternatives, DDW=Developmental Disabilities Waiver, and INST=Institutions.

36

the Alternatives Waiver was 62, the median was 65, and the standard deviation was 25.

The mean quarterly new enrollment for the DD Waiver was 88, the median was 58, and

the standard deviation was 91. The mean quarterly new enrollment for institutional care

services was 1152, the median was 1184, and the standard deviation was 133.

Chart 4.2. Patterns of New Enrollment to the ElderChoices Waiver By Quarter,1998-2002

0

100

200

300

400

500

600

700

800

Q11998

Q21998

Q31998

Q41998

Q11999

Q21999

Q31999

Q41999

Q12000

Q22000

Q32000

Q42000

Q12001

Q22001

Q32001

Q42001

Q12002

Q22002

Q32002

Q42002

3rd

4th

4th

1st

2nd

Chart 4.2 shows the enrollment trends for the ElderChoices Waiver with peak

enrollment for each quarter noted. Over the 20 quarter period, there was an overall

decreasing trend in the number of new enrollees in the program. The quarter of lowest

new enrollments (338) was the third quarter of 2002. The quarter of highest new

enrollment (686) was the 4th quarter of 1999. There do not appear to be any quarterly

patterns of new enrollment for the ElderChoices Waiver. New enrollment peaked in the

4th quarter in 1999 and again in 2000. However, new enrollment peaked in the 3 rd, 1st,

and 2nd quarters for years 1998, 2001, and 2002, respectively.

37

Chart 4.3 Patterns of Enrollment to the Alternatives Waiver by Quarter, SFY 1998-2002

0

20

40

60

80

100

120

Q11998

Q21998

Q31998

Q41998

Q11999

Q21999

Q31999

Q41999

Q12000

Q22000

Q32000

Q42000

Q12001

Q22001

Q32001

Q42001

Q12002

Q22002

Q32002

Q42002

2nd3rd 1st

4th

2nd

Chart 4.3 shows the enrollment trends for the Alternatives Waiver, with peak enrollment

for each quarter noted. Between quarter 1, 1998 and quarter 4, 2002, there was a

steady increase in the number of new enrollees. The quarter of lowest new enrollments

(20) was the first quarter of the reviewed time frame. The quarter of highest new

enrollment (107) was the 4th quarter of 2001. There do not appear to be any quarterly

patterns of new enrollment for the Alternatives Waiver. New enrollment peaked in the

2nd quarter in 1998 and again in 2002. However, new enrollment peaked in the 3rd, 1st

and 4th quarters, for years 1999, 2000, and 2001, respectively.

38

0

50

100

150

200

250

300

350

Q11998

Q21998

Q31998

Q41998

Q11999

Q21999

Q31999

Q41999

Q12000

Q22000

Q32000

Q42000

Q12001

Q22001

Q32001

Q42001

Q12002

Q22002

Q32002

Q42002

Chart 4.4. Patterns of New Enrollment to the DD Waiver By Quarter,SFY 1998-2002

Tie 3rd & 4th

1st

3rd

1st 1st

Chart 4.4 shows the enrollment trends for the Developmental Disabilities (DD) Waiver,

with peak enrollment for each quarter noted. Although there was a rapid increase in

enrollments during two quarters of 1998, there has been an overall decreasing trend in

the number of new enrollees to the DD Waiver between quarter 1, 1998 and quarter 4,

2002. This may be explained by the number of waiver slots available each year being

filled allowing only a few new enrollees to come on to the program each year. The

quarter of lowest new enrollments (21) was the second quarter of the first year in the

reviewed time frame. Two quarters tied for the highest new enrollment (331); they were

the third and fourth quarter of the first year reviewed (1998). For three of the five years

reviewed, the first quarters had the highest new enrollment of the other quarters in that

year. This may be explained by new funding becoming available at the beginning of

each program year enabling additional persons to be served under the program.

39

Chart 4.5. Patterns of New Enrollment for Institutional Care by Quarter, SFY 1998-2002

0

200

400

600

800

1000

1200

1400

1600

Q11998

Q21998

Q31998

Q41998

Q11999

Q21999

Q31999

Q41999

Q12000

Q22000

Q32000

Q42000

Q12001

Q22001

Q32001

Q42001

Q12002

Q22002

Q32002

Q42002

4th

3rd 1st3rd 1st

Chart 4.5 shows the enrollment trends for institutional care, with peak enrollment for

each quarter noted. From 1998 to 2002, there was a slight upward trend in new

enrollments by quarter. The first quarter of 1998 had the lowest new enrollments (831)

while the 3rd quarter of 2001 had the highest new enrollments (1335). The does not

appear to be any quarterly patterns of new enrollment for institutional care. New

enrollment peaked in the 3rd quarter of 1999 and 2001, and in the 1st quarter of 2000

and 2002. In 1998, new enrollment peaked in the 4th quarter.

There do not appear to be any similarities between the three waiver programs and

institutional care in terms of peak quarters of new enrollment.

New Enrollment Rates

Rates of new enrollment were calculated for each of the three waiver programs and for

institutional care using projected population totals for the years 1998 through 2002

available from the CDC Wonder Database using US Census Bureau data. These rates

do not control for poverty level or disability level, both factors considered when

40

determining eligibility for these programs. Unfortunately, population projection data for

persons with disabilities living at or below the poverty line were not available.

Table 4.2 shows the rates of new enrollments per year for the three waiver programs

and institutional care. There is an overall downward trend in the rate of new enrollments

for ElderChoices over the five-year period. For the Alternatives program, the rate of

new enrollments has steadily increased. The new enrollment rate trend for the DD

waiver has dramatically decreased. This decline may be a result of the number of

available slots being filled thereby reducing the number of persons who can enroll in the

program each year. The rate of new enrollments to institutions increased and then has

leveled off over the last several years reviewed.

Table 4.2. Rates per 100,000 of New Enrollment to Various LTC Programs by Year, 1998-2002

YearPopulation,

18-85 years

EC* Enrollees

EC* Rate

ALT* Enrollees

ALT* Rate

DDW* Enrollees

DDW* Rate

INST* Enrollees

INST* Rate

1998 1,880,573 2106 111.99 150 7.98 716 38.07 3804 202.281999 1,901,310 2263 119.02 177 9.31 360 18.93 4719 248.202000 1,920,632 2321 120.85 222 11.56 343 17.86 4797 249.762001 1,940,830 2129 109.70 332 17.11 174 8.97 4805 247.572002 1,960,618 1779 90.74 352 17.95 173 8.82 4920 250.94* EC = ElderChoices, ALT = Alternatives, DDW = Developmental Disabilities Waiver, and INST = Institutions.

Sources: MMIS Database, Census State Population Projections from CDC Wonder

41

Level of Care of New Enrollees

To be eligible for institutional care or

waiver services, a person must have a

functional disability. The level of care

codes used for nursing homes,

Alternatives and ElderChoices are

Intermediate 1-3, with level 1 requiring

the most care. The level of care codes

used for persons with developmental

disabilities enrolling in the DD Waiver

and HDCs are profound, severe,

moderate, and mild. However, the

MMIS does not utilize these codes and

instead uses one code:

Intermediate/Mentally Retarded (MR).

Table 4.3 shows the proportions of new

enrollees by the various levels of care

codes available through the MMIS and

ACES databases. For institutions,

approximately half of the new enrollees

over the five-year review period were

Level 3, the lowest level of care.

Although some data are missing for the

level of care codes for ElderChoices

and Alternatives new enrollees, it is not

too surprising that there was a higher

proportion (average of 40% over the five

years) of persons of higher care needs

(level 1 and 2) enrolling into nursing homes than for ElderChoices (24%) or Alternatives

(29%).

Table 4.3. Level of Care of New Enrollees to LTC Services, SFY 1998-2002.ElderChoices 1998 1999 2000 2001 2002Skilled Nursing 3% 2% 2% 1% 2%Intermediate 1 9% 8% 7% 8% 6%Intermediate 2 15% 18% 17% 21% 13%Intermediate 3 54% 51% 53% 48% 56%Intermediate / MR 0% 0% 0% 0% 0%Hospice 2% 1% 2% 2% 2%Missing 18% 19% 19% 20% 21%Total Percent 100% 100% 100% 100% 100%Total Persons 2106 2263 2321 2129 1779

Alternatives 1998 1999 2000 2001 2002Skilled Nursing 3% 1% 2% 1% 0%Intermediate 1 17% 11% 13% 7% 8%Intermediate 2 17% 22% 16% 17% 18%Intermediate 3 31% 27% 33% 29% 32%Intermediate / MR 3% 3% 3% 1% 1%Hospice 0% 1% 0% 0% 1%Missing 29% 36% 33% 46% 40%Total Percent 100% 100% 100% 100% 100%Total Persons 150 177 222 332 352 DD Waiver 1998 1999 2000 2001 2002Skilled Nursing 0% 0% 0% 0% 0%Intermediate 1 0% 0% 0% 0% 0%Intermediate 2 1% 1% 0% 0% 0%Intermediate 3 2% 1% 1% 1% 0%Intermediate / MR 83% 73% 76% 70% 64%Hospice 0% 0% 0% 0% 0%Missing 13% 26% 23% 30% 36%Total Percent 100% 100% 100% 100% 100%Total Persons 715 360 342 174 173

Institutions 1998 1999 2000 2001 2002Skilled Nursing 7% 7% 7% 5% 7%Intermediate 1 13% 14% 12% 12% 11%Intermediate 2 24% 30% 28% 27% 27%Intermediate 3 54% 48% 51% 52% 52%Intermediate / MR 1% 0% 1% 1% 0%Hospice 0% 1% 1% 2% 2%Total Percent 100% 100% 100% 100% 100%Total Persons 3804 4719 4797 4805 4920Source: Arkansas MMIS and ACES

42

Socio-Demographic Characteristics of New Enrollees

The research team reviewed the data on new enrollees to provide information on

gender, race, skill level and age by program for each of the five state fiscal years

reviewed.

AgeThe Alternatives Waiver Program is open to persons with physical disabilities who are

21-64 years of age. The ElderChoices Waiver is open to persons eligible for

institutional care who are 65 years of age or older. The Developmental Disabilities (DD)

Waiver is open to persons of any age with developmental disabilities as long as the

disability was determined prior to the person reaching age 22. Institutional care is open

to persons with certain physical limitations and functional assistance needs regardless

of age. For this analysis, persons under 18 years of age were excluded.

Data for the Alternatives Waiver indicated

all but three new enrolled persons were in

the 18-64 year age category. Since the

program’s eligibility criterion limits it to

persons with physical disabilities between

the ages of 21-64, it is assumed that data

entry error accounts for the three persons

older than 65 that were included as new

enrollees in the MMIS database. Table 4.4

shows the number of new enrollees by age

category by state fiscal year. As noted in

the section on patterns in new enrollment,

the number of new enrollments steadily

increased over the five-year review period.

Table 4.5 shows the number of new enrollees to the ElderChoices Waiver by four age

categories. For each of the five years reviewed, the age category with the highest

Table 4.4. New Enrollees to the Alternatives Waiver by Age Category, SFY 1998-2002Ages 1998 1999 2000 2001 2002

18-64 150 177 221 331 351

>65 0 0 1 1 1

Source: Arkansas MMIS Database

Table 4.5. New Enrollees to the ElderChoices Waiver by Age Category, SFY 1998-2002 Ages 1998 1999 2000 2001 200218-64 2 1 1 2 065-74 590 656 728 629 52875-84 876 921 938 885 743> 84 638 685 654 613 508Source: Arkansas MMIS Database

43

number of new enrollees was the 75-84 year age category. For 1998 and 1999, the age

category with the second highest number of new enrollees was the >84 years age

group followed by the 65-74 year age category. For the other three years reviewed

(2000-2002), the 65-74 year age category had the second highest number of new

enrollees, followed by the >84 year age category.

Table 4.6 shows the number of

enrollees to the DD waiver by various

age categories. Only a few persons

enrolling to this waiver were not

between the ages of 18 and 64 years of

age. This may be due to the limited life

expectancy of these persons and/or that older persons with developmental disabilities

utilize other waiver services (such as ElderChoices).

Because of variations in the distribution of age across the population, census data were

extracted to determine the rate by which persons of different age groups were using

various LTC services. New enrollment rates were calculated by age group regardless of

disability and poverty, and where possible, by age group of those with disabilities who

were non-institutionalized. Population data obtained from the US Census Bureau for

the 2000 US Census do not correspond to the age categories for the four LTC services

examined.

Table 4.7 indicates persons enrolled in the

ElderChoices Program at a higher rate as

they age. The enrollment rate doubles

from the 65-74 year old group to the 75-84

year old group, and then doubles again

from the 75-84 year old group to the >84

year old group. Since census data age

categories for non-institutionalized

disabled persons do not correspond to

Table 4.6. New Enrollees to the DD Waiver by Age Category, SFY 1998-2002  Ages 1998 1999 2000 2001 200218-64 707 357 339 174 17365-74 9 3 2 0 0>75-84 0 0 2 0 0

Source: Arkansas MMIS Database

Table 4.7. Rate per 100,000 persons of New Enrollees for the ElderChoices Waiver by Age Category, SFY 2000

 2000 State Population

New Enrollees

Rate (per 100,000)

18-64 1,619,012 1 0.0665-74 198,334 728 367.0675-84 129,195 938 726.03

>84 46,492 654 1406.69

Sources: US Census Bureau. Arkansas MMIS

44

age categories used in this analysis, a rate was not calculated for new enrollment into

the ElderChoices program for non-institutionalized disabled persons by age category.

Table 4.8 provides a utilization rate in

2000 for the Alternatives Program.

This rate is very low for the number of

persons in the 18-64 year age category

in the general population. However,

when the level of disability is

considered, the rate increases. See

Table 4.9. Since Alternatives does not serve persons 65 years and older, no rates

were calculated for the persons the

MMIS database indicated were enrolled

in this program. Data entry error may

account for their existence in the

information database.

Table 4.10 indicates that the utilization

rates in 2000 for persons who newly

enrolled in the DD Waiver was 170.92 per

100,000 persons aged 18-64 years.

Table 4.11 shows the rate of new

enrollment to the DD Waiver for disabled

persons in the Community by age

category. Once disability is controlled for,

the rate increases to 339 per 100,000.

Table 4.8. Rate per 100,000 Persons of New Enrollees for Alternatives by Age Category, 2000

 State Population

New Enrollees*

Rate (per 100,000)

18-64 1,619,012 221 13.65

65+ 374,021 1 NA*Enrollees are ages 21-64 years.Source: US Census and Arkansas MMIS

Table 4.9. Rate per 100,000 Persons of New Enrollees for Alternatives by Age Category, 2000

 

Persons Disabled in Community

New Enrollees*

Rate (per 100,000)

21-64 269,825 221 81.90

65+ 142,637 1 NASource: US Census and Arkansas MMIS

Table 4.10. Rate per 100,000 Persons of New Enrollees for the DD Waiver by Age Category, 2000

 State Population

New Enrollees

Rate (per 100,000)

18-64 1,619,012 339 170.92

65-74 198,334 2 1.0075-84 129,195 2 1.55

>84 46,492 0 0.00Source: US Census and Arkansas MMIS

Table 4.12. New Enrollees for Institutional Care by Age Category, SFY 1998-2002  1998 1999 2000 2001 200218-64 487 559 667 572 66065-74 579 728 711 744 66475-84 1380 1712 1667 1714 1735>84 1358 1720 1752 1775 1861Source: Arkansas MMIS Database.

Table 4.11. Rate per 100,000 Persons of New Enrollees for the DD Waiver by Age Category, 2000

 

Persons Disabled in Community

New Enrollees*

Rate (per 100,000)

21-64 269,825 339 339.00

65+ 142,637 4 2.8*Includes new enrollees 18 - 64 years.Source: US Census and Arkansas MMIS

45

Table 4.12 provides data for the distribution of new enrollees for institutional care by

age category and state fiscal year. Both the 75-84 year and the >84 categories had 2.5

times more new enrollees for institutional care than the 18-64 year and the 65-74 year

age categories. In all but 1998, the age category with the highest number of new

enrollees was the >84 year age category. In 1998, the 75-84 year age category had the

highest number of new enrollees for institutional care.

Using the 2000 new enrollment figures for institutional care and 2000 Census age

distribution data for Arkansas, it was

found, as with the ElderChoices Waiver

program, that new enrollees in the >84

year age category are enrolling at a higher

rate (3,768.39) than persons in the other

three age categories (41.20, 358.49,

1,290.30,

respectively). See Table 4.13.

Table 4.14 shows the rate for institutional

care for non-institutionalized persons

with disabilities of two age categories.

Because the available census data do

Table 4.13. Rate per 100,000 Persons of New Enrollees for Institutional Care by Age Category, SFY 2000

 2000 State Population

New Enrollees

Rate (per 100,000)

18-64 1,619,012 667 41.2065-74 198,334 711 358.4975-84 129,195 1667 1290.30

>84 46,492 1752 3768.39Source: US Census Bureau and Arkansas MMIS.

Table 4.14. Rate per 100,000 Persons of New Enrollees for Institutional Care by Age Category, 2000

 

Persons Disabled in Community

New Enrollees*

Rate (per 100,000)

21-64 269,825 667 247.20

65+ 142,637 4797 3363.08*Includes new enrollees 18 - 64 years.Source: US Census and Arkansas MMIS

46

not match the age categories of the data extracted from the MMIS, it is difficult to

compare the rates between Table 4.13 and Table 4.14.

47

RaceThe research team looked at the new enrollment to each of the waiver programs and to

institutional care by members of different racial groups. Data limitations do not allow

description of ethnicity so non-white and non-black enrollees are grouped as other or

unknown. The data did not

indicate much variability by racial

group among the new enrollees

of each of the four LTC programs

reviewed. See Table 4.15. The

average percentage of each of

the racial groups over the five-

year period for institutional care

was 80% white, 17% black, and

3% other/unknown. The average

percentage of each of the racial

groups over the five-year period

for the ElderChoices Waiver was

75% white, 21% black, and 4%

other/unknown. The average

percentage of each of the racial groups for the Alternatives Program was 77% white,

19% black, and 3% other/unknown. The average percentage of new enrollees to the

DD waiver was 79% white, 20% black, and 0% other/unknown. (Note: because of

rounding, average percentages may not equal 100%).

However, it does appear that blacks (as a proportion of new enrollees) are enrolling in

institutional care less than they are enrolling in HCBS (the three waiver programs).

Specifically, the average proportion of new enrollees to institutional care who were black

was 17%, compared to 20% for the average proportion of new enrollees to all three

waiver programs.

Table 4.15. Percentage of New Enrollees for LTC Services By Race, SFY 1998-2002ElderChoices 1998 1999 2000 2001 2002White 75% 75% 76% 73% 74%Black 21% 20% 20% 22% 23%Other/Unknown 4% 4% 4% 4% 4%

Alternatives 1998 1999 2000 2001 2002White 84% 83% 74% 77% 69%Black 14% 14% 23% 19% 26%Other/Unknown 2% 3% 3% 4% 4%

DD Waiver 1998 1999 2000 2001 2002White 83% 84% 75% 71% 84%Black 16% 16% 25% 28% 16%Other/Unknown 1% 0% 0% 1% 0%

Institutions 1998 1999 2000 2001 2002White 79% 80% 80% 81% 81%Black 17% 17% 16% 16% 16%Other/Unknown 4% 3% 3% 3% 3%Source: Arkansas MMIS

48

To consider more accurately the new enrollment patterns by members of different racial

groups to the various LTC services, the research team desired to calculate rates which

accounted for the disability level and the poverty status of persons of different racial

groups. However, census data are not available to allow for stratification across all three

variables (race, disability level and poverty status). The research team obtained from

US Census data, the number of non-institutionalized persons by racial group aged 18

years who were living at or below the poverty line, and the number of non-

institutionalized persons by racial group aged 21 years with a disability who were

unemployed (as a proxy for low income). Black Arkansans had disproportionately

higher percentages of unemployed disabled persons and persons living in poverty as

compared to white Arkansans (23% versus 18%, and 27% versus 11%, respectively).

Across the three waiver programs and

institutional care services, white

Arkansans below the poverty level

enrolled in these services at a rate

higher than that of African Americans

below poverty level (See Table 4.16).

For the ElderChoices program, the rate

of new enrollments for whites was 30%

higher than that of African Americans.

This represented the closest rate of new

enrollment between whites and blacks

among the four LTC services. Whites

enrolled in the Alternatives program at a

rate about 1.5 times higher than that of

African Americans. Whites enrolled in

the DD waiver at a rate that was 34%

higher than that of African Americans. The difference between the rate of enrollment of

whites and blacks for institutional care was larger than any rate differences for the three

Table 4.16. Rate per 100,00 Persons of New Enrollment to LTC Services by Race, 2000

ElderChoicesFPL or Below

*New Enrollees Rate

White, 65 yrs + 36,109 1768 4896.29

Black, 65 yrs + 12,136 456 3757.42

AlternativesFPL or Below

**New Enrollees Rate

White, 18-64 yrs 139,193 165 118.54

Black, 18-64 yrs 62,660 50 79.80

DD WaiverFPL or Below

New Enrollees Rate

White, 18-64 yrs 139,193 250 179.61

Black, 18-64 yrs 62,660 84 134.06

InstitutionsFPL or Below

New Enrollees Rate

White, 18 yrs + 175,302 3858 2200.77

Black, 18 yrs + 74,796 791 1057.54FPL=Federal Poverty Level. *Includes persons 60-65. ** Only includes persons 21-64. Source: US Census and AR MMIS.

49

waiver programs. For this program, whites enrolled at a rate more than twice that of

African Americans.

These differences, revealed after taking into account the higher rate of poverty in the

African-American population, indicate there may be disparities in utilization of formal

long-term care services in the African-American population.

However, more study is needed to confirm whether or not disparities exist, as the use of

poverty data to determine rates of participation is not a precise measure. In 2002 the

poverty level for an individual age 65 or older was $9,359. Income eligibility for

Medicaid institutional care and ElderChoices is not based on the poverty level. It is

based on the federal Supplemental Security Income (SSI) level ($545 per month or

$6,540 per year in 2002); the eligibility threshold is three times SSI. Therefore, in 2002,

individuals with incomes up to $19,620 were income eligible for Medicaid institutional

care or waiver care.

GenderThe research team looked at the

differences in new enrollments by

the gender of the enrollees across

the four LTC services. In general,

new enrollees to institutions and to

the ElderChoices program were

about 3 to 1 female. The average

enrollment for females to

institutional care across the five

years reviewed was 69%. For

ElderChoices, the five-year

average percentage of female new

enrollees was 74%. In contrast,

Table 4.17. Percentage of New Enrollees for LTC Services By Gender, SFY 1998-2002ElderChoices 1998 1999 2000 2001 2002Female 76% 74% 75% 75% 72%Male 24% 25% 25% 25% 28%

Alternatives 1998 1999 2000 2001 2002Female 40% 55% 48% 50% 50%Male 60% 45% 52% 50% 50%

DD Waiver 1998* 1999* 2000 2001 2002Female 47% 49% 47% 42% 47%Male 52% 50% 53% 58% 53%Institutions 1998 1999 2000 2001 2002Female 71% 69% 69% 69% 68%Male 29% 31% 31% 31% 32%Source: Arkansas MMIS. * Gender data was missing for several enrollees which made the percentage less than 100.

50

new enrollees to the Alternatives and DD Waiver programs were nearly evenly split

between males and females. The five-year average percentage of female new

enrollees to Alternatives was 49%, and to the DD Waiver was 47%. See Table 4.17.

Table 4.18 shows the rate of new enrollment to the four LTC services by gender in

2000. The table above showing the percentages of enrollment by gender suggests that

males and females are enrolling in the Alternatives and DD Waiver about evenly, and

that females are enrolling in

ElderChoices and

institutions about three

times more than males.

However, looking at the

rates of enrollment based

on the number of

impoverished males and

females by age group in the

population provides a

different picture. Male and

female enrollment rates to

ElderChoices are nearly the

same, with females

(4928.62) enrolling at just a

slightly higher rate than males (4212.72) In contrast, males enrolled in the Alternatives

Waiver and the DD Waiver (130.41, 204.61, respectively) about 1.5 times more often

than females (83.79, 127.26, respectively). For institutions, females (2039.92) enrolled

1.5 times more often than males (1444.36).

Table 4.18. Rate per 100,000 Persons of New Enrollment to LTC Services by Gender, 2000

ElderChoicesImpoverished

PersonsNew

Enrollees* RateFemales, 65 yrs + 35,162 1733 4928.62Males, 65 yrs + 13,934 587 4212.72

AlternativesImpoverished

PersonsNew

Enrollees** RateFemales, 18-64 yrs 126,511 106 83.79Males, 18-64 yrs 88,949 116 130.41

DD WaiverImpoverished

PersonsNew

Enrollees RateFemales, 18-64 yrs 126,511 161 127.26Males, 18-64 yrs 88,949 182 204.61

InstitutionsImpoverished

PersonsNew

Enrollees RateFemales, 18 yrs + 161,673 3298 2039.92Males, 18 yrs + 103,783 1499 1444.36*Includes persons 60-65. ** Only includes persons 21-64. Source: US Census and AR MMIS.

51

Geographic Distribution

To look at differences in enrollment patterns by different geographic regions, the

number of persons enrolling in institutional and HCBS (ElderChoices, Alternatives and

DD Waiver) was converted to a rate per persons 18 years older living at or below the

poverty line in the counties. That rate was then converted to a Z-Score (value – mean /

standard deviation). Z-Scores are used to standardize data and to compare a value (a

new enrollment rate, in this case) to the average for all values in the dataset (average

rate for all counties, in this case). After Z-Scores were calculated they were assessed

for significant differences. Counties that were significantly different were those which

had a Z-Score that was equal or greater than +1.96 (significantly higher) and those with

a Z-Score equal or less than -1.96 (significantly lower).

Table 4.19 lists the new

enrollment rate and Z-score for

HCBS in 2000 for each of the

75 counties in the state. Only

three counties had statistically

significantly higher rates as

compared to the average

county rate. They were Dallas,

Logan and St. Francis

Counties. See Map 4.1. No

counties had significantly lower

new enrollment rates for HCBS.

Table 4.20 lists the new

enrollment rates and Z-Scores

for institutional services. No

counties had statistically

significantly different rates as compared to the average county rate.

Map 4.1. Counties with Significantly Higher (Shaded) New Enrollments to Home and Community-Based LTC Services, SFY 2000.

52

Table 4.19. Rate per 100,000 Persons and Z-Score of Enrollment to Home and Community-Based Services by County, 2000

County

Enrollees to HCB,

2000Adults in

Poverty, 2000 RateZ-

Score County

Enrollees to HCB,

2000Adults in

Poverty, 2000 RateZ-

ScoreArkansas 43 2344 1834.47 0.41 Lee 46 1954 2354.15 0.93Ashley 57 2502 2278.18 0.85 Lincoln 16 1333 1200.30 -0.22Baxter 51 3111 1639.34 0.22 Little River 5 1420 352.11 -1.06Benton 87 9461 919.56 -0.50 Logan 80 2326 3439.38 2.00Boone 43 3373 1274.83 -0.14 Lonoke 47 3533 1330.31 -0.09Bradley 13 2230 582.96 -0.83 Madison 16 1675 955.22 -0.46Calhoun 21 645 3255.81 1.82 Marion 14 1590 880.50 -0.53Carroll 34 2624 1295.73 -0.12 Miller 28 4639 603.58 -0.81Chicot 52 2374 2190.40 0.77 Mississippi 38 6966 545.51 -0.87Clark 24 3002 799.47 -0.61 Monroe 19 1693 1122.27 -0.29Clay 34 2186 1555.35 0.14 Montgomery 8 1057 756.86 -0.66Cleburne 17 2187 777.32 -0.64 Nevada 10 1543 648.09 -0.76Cleveland 17 802 2119.70 0.70 Newton 15 1139 1316.94 -0.10Columbia 22 3293 668.08 -0.75 Ouachita 43 3628 1185.23 -0.23Conway 48 2070 2318.84 0.89 Perry 21 968 2169.42 0.74Craighead 77 8377 919.18 -0.50 Phillips 63 4698 1341.00 -0.08Crawford 53 4589 1154.94 -0.26 Pike 18 1277 1409.55 -0.01Crittenden 39 7172 543.78 -0.87 Poinsett 58 3453 1679.70 0.26Cross 33 2312 1427.34 0.01 Polk 15 2421 619.58 -0.79Dallas 80 1090 7339.45 5.87 Pope 82 5374 1525.87 0.11Desha 22 2642 832.70 -0.58 Prairie 16 975 1641.03 0.22Drew 20 2257 886.13 -0.53 Pulaski 165 28972 569.52 -0.84Faulkner 59 7481 788.66 -0.63 Randolph 33 1869 1765.65 0.34Franklin 23 1833 1254.77 -0.16 Saline 59 4029 1464.38 0.04Fulton 30 1339 2240.48 0.82 Scott 20 1333 1500.38 0.08Garland 30 8272 362.67 -1.05 Searcy 16 1368 1169.59 -0.25Grant 25 1101 2270.66 0.84 Sebastian 96 9753 984.31 -0.43Greene 30 3409 880.02 -0.53 Sevier 7 1783 392.60 -1.02Hempstead 15 2845 527.24 -0.88 Sharp 35 2116 1654.06 0.23Hot Spring 25 2743 911.41 -0.50 St. Francis 59 1476 3997.29 2.56Howard 13 1385 938.63 -0.48 Stone 29 4189 692.29 -0.72Independence 45 2939 1531.13 0.11 Union 67 5323 1258.69 -0.16Izard 18 1522 1182.65 -0.23 Van Buren 23 1681 1368.23 -0.05Jackson 30 1899 1579.78 0.16 Washington 82 15456 530.54 -0.88Jefferson 72 9721 740.66 -0.67 White 70 5894 1187.65 -0.23Johnson 41 2493 1644.60 0.22 Woodruff 49 1471 3331.07 1.90Lafayette 14 1287 1087.80 -0.33 Yell 34 2076 1637.76 0.22

Lawrence 27 2093 1290.01 -0.13          

Source: Arkansas MMIS and US Census Bureau.

53

Table 4.20. Rates per 100,000 Persons and Z-Scores of Enrollment to Institutions Services by County, 2000

County

Institutional Enrollees,

2000

Adults in Poverty,

2000 RateZ-

Score County

Institutional Enrollees,

2000

Adults in Poverty,

2000 RateZ-

ScoreArkansas 60 2,344 40.95 -1.37 Lee 26 1,954 33.94 -1.37Ashley 48 2,502 43.79 -1.36 Lincoln 42 1,333 22.79 -1.39Baxter 99 3,111 54.72 -1.35 Little River 34 1,420 24.35 -1.38Benton 153 9,461 168.77 -1.24 Logan 55 2,326 40.63 -1.37Boone 60 3,373 59.43 -1.35 Lonoke 115 3,533 62.30 -1.35Bradley 40 2,230 38.90 -1.37 Madison 27 1,675 28.93 -1.38Calhoun 10 645 10.44 -1.40 Marion 22 1,590 27.41 -1.38Carroll 31 2,624 45.98 -1.36 Miller 82 4,639 82.17 -1.33Chicot 38 2,374 41.49 -1.37 Mississippi 106 6,966 123.96 -1.28Clark 71 3,002 52.77 -1.36 Monroe 17 1,693 29.26 -1.38Clay 35 2,186 38.11 -1.37 Montgomery 19 1,057 17.83 -1.39Cleburne 41 2,187 38.13 -1.37 Nevada 32 1,543 26.56 -1.38Cleveland 15 802 13.26 -1.39 Newton 18 1,139 19.31 -1.39Columbia 56 3,293 57.99 -1.35 Ouachita 59 3,628 64.01 -1.34Conway 37 2,070 36.03 -1.37 Perry 26 968 16.24 -1.39Craighead 159 8,377 149.30 -1.26 Phillips 64 4,698 83.23 -1.33Crawford 103 4,589 81.27 -1.33 Pike 30 1,277 21.79 -1.39Crittenden 83 7,172 127.66 -1.28 Poinsett 43 3,453 60.87 -1.35Cross 39 2,312 40.37 -1.37 Polk 36 2,421 42.33 -1.37Dallas 33 1,090 18.43 -1.39 Pope 89 5,374 95.37 -1.31Desha 42 2,642 46.30 -1.36 Prairie 35 975 16.36 -1.39Drew 32 2,257 39.39 -1.37 Pulaski 361 28,972 519.18 -0.89Faulkner 119 7,481 133.21 -1.28 Randolph 43 1,869 32.42 -1.38Franklin 65 1,833 31.77 -1.38 Saline 166 4,029 71.21 -1.34Fulton 35 1,339 22.90 -1.39 Scott 15 1,333 22.79 -1.39Garland 185 8,272 147.41 -1.26 Searcy 10 1,368 23.42 -1.38Grant 24 1,101 18.63 -1.39 Sebastian 178 9,753 174.01 -1.24Greene 73 3,409 60.08 -1.35 Sevier 38 1,783 30.87 -1.38Hempstead 43 2,845 49.95 -1.36 Sharp 52 2,116 36.85 -1.37Hot Spring 54 2,743 48.11 -1.36 St. Francis 43 1,476 25.36 -1.38Howard 47 1,385 23.73 -1.38 Stone 18 4,189 74.08 -1.33Independence 61 2,939 51.64 -1.36 Union 125 5,323 94.45 -1.31Izard 30 1,522 26.19 -1.38 Van Buren 46 1,681 29.04 -1.38Jackson 43 1,899 32.96 -1.38 Washington 171 15,456 276.44 -1.13Jefferson 140 9,721 173.44 -1.24 White 130 5,894 104.71 -1.30Johnson 30 2,493 43.63 -1.36 Woodruff 29 1,471 25.27 -1.38Lafayette 31 1,287 21.97 -1.39 Yell 54 2,076 36.14 -1.37

Lawrence 76 2,093 36.44 -1.37          

Source: Arkansas MMIS and US Census Bureau.

54

Discussion

Limitations. Several limitations of the analysis presented in this chapter should be

noted. Specifically, the rates and percentages presented are for the most part

unstratified and do not control for factors that might vary across the variables being

examined. New enrollment data were based on eligibility start dates drawn from

eligibility files of beneficiaries and the accuracy of these data is uncertain. The data

examined here were administrative data collected for payment purposes rather than for

research. While early attempts were made to link eligibility files with claims data to

increase the accuracy of the enrollment picture, resolution of contradictions within these

data was outside of the scope of this study.

Recommendation: Better coordination of data. An important finding arising from

this study relates to the lack of common data elements across the various long term

care systems of care examined in this study. In Appendix A of this report, a matrix is

presented that was developed to identify data sources for this secondary data analysis.

Better coordination and standardization of the data elements collected and the manner

for processing and accessing these data would enhance studies of this kind and

facilitate efforts to examine the impact of programs and policies and related changes.

55

Chapter 5Description of the Study Sample, and Characteristics of Participants

in Focus Group Discussions and Key Informant Interviews

This section describes the actual sample drawn for this study and compares it with the

desired sample as described in Chapter 2. In addition, the demographic characteristics

of the respondents participating in Focus Group Discussions (FGD) and Key Informant

Interviews (KII) are described

Key findings from the FGDs and KIIs are presented in Chapters 6, 7, and 8.

Sample Description As noted in Chapter 2, the sample for the key informant interviews for long-term care

(LTC) consumers was up to 12 index cases for each of the three targeted

subpopulations of elderly, adults with physical disabilities and adults with developmental

disabilities. The research team attempted to balance the index cases in terms of

gender, race, marital status, and geographic location. Although some index case

consumers were not interviewed due to cognitive impairments, all the index case

consumers represented the actual sample.

The research team was able to recruit 39 index cases (14 elderly, 15 adults with

physical disabilities, and 10 adults with developmental disabilities) into the study.

Seven of these 39 index cases (four elderly, two adults with physical disabilities, and

one adult with developmental disabilities) were eventually excluded from the sample

because they did not meet the minimum sample eligibility criteria or were too cognitively

impaired to complete the interviews. The final sample contained a total of 32 index

cases, 10 elderly index cases, 13 adults with physical disabilities index cases, and nine

adults with developmental disabilities index cases. All these index cases met the

56

minimum sample eligibility criteria in terms of being eligible for Medicaid LTC services.

Table 5.1 provides other characteristics of the sample. In general, the research team

was able to recruit a sample that was fairly balanced in terms of demographic

characteristics. Due to the availability of index cases meeting the minimum sample

eligibility criteria, a balance was not achieved for gender among the index cases of the

adults with developmental disabilities (two females, seven males). In addition, all three

subpopulations had more index cases from rural areas of the state in comparison to

urban areas. Finally, there were more index cases using HCBS than institutional

services in the adults with developmental disabilities group. The average age of the

index cases were: 76 years for the elderly, 52 years for the adults with physical

disabilities, and 33 years for the adults with developmental disabilities.

Table 5.1. Characteristics of the Study SampleSample Subpopulation

Number of Index Cases

Service Type

HCBS/INST

Gendermale/female

Racewhite/black

Regionurban/rural

AverageAge

Elderly 10 6/4 6/4 5/5 3/7 76 years* Adults with Physical Disabilities

13 6/7 6/7 7/6 4/9 52 years**

Adults with Developmental Disabilities

9 6/3 2/7 6/3 3/6 33 years*

*Missing age data on 2 index cases. **Missing age data on 1 index case

Characteristics of Focus Group ParticipantsThe focus group sample consisted of 32 participants across the four focus group

discussions. In addition to the questions asked by the focus group moderators, the 32

focus group participants were asked to complete a short survey, to provide a

demographic and professional expertise profile of focus group respondents. Twenty-

nine of the 32 focus group participants completed the post-discussion survey.

Respondents were mostly white (23) and female (26). Nearly half (12) held a master’s

or doctorate degree, with another seven having completed bachelor’s degrees. The

focus of the degrees was mixed; however, seven reported having been educated in

57

nursing. On a scale from 1 to 7 (highest) of expertise in their current position and in

their field in general, most focus group participants considered themselves to be

experts. See Table 5.2 for selected characteristics.

Table 5.2. Selected Characteristics of Provider Focus Group ParticipantsGroup

1Group

2Group

3Group

4Summary

Elderly Elderly Adults with Physical Disabilities

Adults with DevelopmentalDisabilities

Number Attending 9 8 8 6 31Surveys Completed 9 6 8 6 29Males/Females 2/7 2/4 2/6 0/6 6/23Black/White/Other 0/9/0 0/6/0 2/4/2 2/4/0 4/23/2

Persons attending the focus group were given an opportunity to describe the patient

group(s) that comprised the majority of their caseload. As respondents could select

more than one patient group, the responses are greater than the total number of

attendees.

Of the six persons attending the group about adults with developmental disabilities, four

reported primarily working with these persons in HCBS settings. Two reported working

with adults with developmental disabilities in institutional settings. One of the persons

reported working with both adults with physical disabilities and adults with

developmental disabilities in institutional settings. One person reported working with a

population other than elderly, adults with physical disabilities, and adults with

developmental disabilities.

Of the eight persons attending the focus group about adults with physical disabilities,

five reported working with adults with physical disabilities in HCBS settings, three

reported working with adults in institutions, one reported working with adults with

developmental disabilities in an institutional setting, and one reported working with

adults with physical disabilities in an institutional setting.

58

Of the 17 people who attended the two focus groups about the elderly, five reported

working with elderly in HCBS settings and three reported working with elderly in

institutional settings. Three also reported working with adults with physical disabilities in

a HCBS setting and two reported working with adults with physical disabilities in an

institutional setting.

Characteristics of Key InformantsFor the study, a total of 59 key informants were interviewed. The average age was 55

years. Most of the informants were female (69%), were white (56%), were married

(41%), and had some college or a college degree (46%). Actual consumers of LTC

services represented nearly one-third (32%) of all informants, while 29% were legal

guardians of consumers, and 39% were associated with the consumers (either were family,

friends, or service providers).

Table 5.3. Characteristics of Key Informants

Service Type Total

Average Age* Gender Race

Marital Status

Education Level

Respondent Type

     

Male / Female / Unknown

White/ Black/ Other /

Unknown

Married / Widowed/

Single/ Divorced

/ Unknown

Less than High

School/ High

School/ Some

College or Degree / Unknown

Index Case (Consumer) /

Guardian / Other

AssociateKey Informants about Long-Term Care Services for Elderly

HCBS 11 66.78 3/8/0 6/4/0/1 3/3/3/0/2 5/0/4/2 5/0/6INST 7 56.85 2/5/0 4/3/0/0 3/1/0/3/0 0/4/3/0 2/2/3

 Key Informants about Long-Term Care Services for Adults with Physical Disabilities

HCBS 12 50.36 4/7/1 4/6/0/2 4/2/2/3/1 3/3/4/2 5/7/0INST 14 47.36 3/11/0 8/6/0/1 6/1/3/4/0 3/4/7/0 6/1/7

 Key Informants about Long-Term Care Services for Adults with Developmental DisabilitiesHCBS 11 56.09 4/7/0 9/2/0/0 6/1/2/2/0 2/2/7/0 1/4/6INST 4 61.75 1/3/0 3/1/0/0 2/1/0/1/0 1/1/2/0 0/3/1

 Note: HCBS = Home and Community-Based Services, INST= Institutional Services*Missing Data on 2 of the Elderly HCBS respondents

59

The 59 interviews represented the three target subpopulations: elderly, adults with

physical disabilities and adults with developmental disabilities. Table 5.3 provides

characteristics of the respondents by each of the three subpopulations and service type

(HCBS and institutions). A composite profile of the total participants by each of the

three subpopulations follows the table.

Elderly. Eighteen of the 59 persons interviewed represented the elderly subpopulation,

of which one-half (n=9, 50%) were associates of the elderly consumers and 39% (n=7)

were actual elderly consumers. Twelve of the interviews related to elderly persons

receiving HCBS while seven related to elderly persons receiving services in institutional

settings. Across the 18 persons interviewed, the average age was 62 years. Nearly

three-fourths (n=13, 72%) of the informants were female. Just over half (n=10, 56%) of

the informants were white, while 39% (n=7) of informants were African-American. Seven

of the 18 informants (39%) had some college or a college degree. Half of the

informants were associates of an elderly consumer, while just over one-third, (n=7,

39%) were actual elderly consumers.

Adults with Physical Disabilities. The study team was able to interview 26 persons

representing the adults with physical disabilities group. They were nearly evenly divided

between persons (or associates of these persons) who used HCBS (n=12) and persons

(or associates of these persons) who used institutional services. Nearly half (n=11,

42%) were adults with physical disabilities, while 8 (31%) were legal guardians, and

seven (27%) were other persons associated with the adults with physical disabilities.

The average age of all the persons interviewed was 49 years. Nearly two-thirds (n=18,

69%) of the informants were female. The informants were evenly mixed between

whites (n=12, 46%) and African Americans (n=12, 46%). Informants most often

reported being currently married (n=10, 38%).

Adults with Developmental Disabilities. A total of 15 persons representing the adults

with developmental disabilities population were interviewed. Most (n=11) represented

the persons who used HCBS. Only four represented persons using institutional

60

services. Only one of the informants was an actual consumer with developmental

disabilities. The other informants were evenly mixed between legal guardians (n=7,

41%) and other associates of adults with developmental disabilities (n=7, 41%). The

average age of all informants was 58 years. Nearly two thirds (n=10, 67%) of the

informants were female, and most (n=12, 73%) were white. More than half (n=8, 53%)

reported being married. Nearly two-thirds (n=9, 60%) had completed some college or

obtained a college degree.

61

Chapter 6Leveling the Playing Field for Home and Community-based

and Institutional Services

A recurring theme that emerged over the course of the study from the Advisory Working

Group (AWG), the Focus Group Discussions (FGD), the Key Informant Interviews (KII),

and in reviewing policies was a sense that the playing field for home and community-

based services (HCBS) is not level with that for institutional services. This theme played

out in consumer and caregiver interviews as differences in access to, as well as scope, of

available services. For providers, policy and programmatic differences supporting this

theme were identified as well.

This section describes four key findings related to the theme of leveling the playing field.

The first three findings identify barriers that result in reduced access to HCBS when

compared to institutional services: gate-keeping and difficulties navigating the system,

requirements for re-assessment, and financial eligibility for services. The fourth finding

highlights the critical role of advocates in overcoming these system barriers.

Findings presented are those for which programmatic and policy changes are most

likely to have an impact. The quotes chosen for presentation are among the most

illustrative of the findings they support. (Please see Chapter 2 for a fuller description of

the data sources and analysis methods.) To protect the identity of study respondents,

gender is concealed by random assignment of gender-specific pronouns and

pseudonyms in quotes and other text describing cases.

Recommendations were developed in the context of these findings with input from the

AWG and through reviewing the published, as well as unpublished, literature for

recommended best practices. Recommendations are made for each key finding and

discussed at the end of this section.

62

KEY FINDING 1: Gate-keeping and difficulties navigating the HCBS system may restrict access to HCBS.

Most of those using HCBS found the application and approval process confusing,

complicated and/or characterized by excessive gate-keeping, onerous paperwork and

long waiting periods, whereas few recipients of institutional care reported similar

experiences in applying for services.

Both providers and consumers reported instances of excessive gate-keeping. A few

recipients of HCBS mentioned having to apply multiple times in order to be finally

approved for services. A few mentioned not understanding the services for which they

were actually applying. For three of the five cases in which getting on HCBS was

relatively easy, participants reported that a friend intervened, steering them to the right

agency when health care or social service providers did not provide information and

guidance.

“They called over and said he didn’t qualify anymore because he is now standing by himself. Well, when he was in my office, it took us 20 minutes to get him on the scales. I don’t know what their definition of ‘stand by assist’ is, but it took every bit of 20 minutes to get him on and off the scales … [T]hat one gentleman did finally get on, after I reapplied and reapplied and reapplied and finally called the state and said, ‘Look somebody, please come look at this man.’” (FGD quote from a provider of services to the elderly)

“And even if they apply for that Alternative Waiver, which is ages 21 through 64, it takes at least 45 days, so what do you do from day 1 to day 45? Sometimes, it takes longer.” (FGD quote from a provider of services to adults with physical disabilities)

63

“[You can’t go down to DHS and say] … ‘I want to apply for this,’ without your case worker having to track down or figure out or find out or locate some hidden paperwork somewhere or a form that she didn’t know about, track down and get shipped in, or whatever …There’s not really forms to fill out for half the programs that exist … Yea, access to the forms to fill out for the program is a big issue they need to work on … and knowledge of ‘Hey, I don’t need form A, I need form B. I don’t need form 12, I need form 16.’” (Quote from a KII with an Alternatives Waiver consumer)

A number of respondents reported having to re-do applications more than once as a

result of lost paperwork.

“Round and round in a circle. Sending me papers back here that done been signed. … ‘Well, maybe we got hold of the wrong papers …’” (Quote from KII with an ElderChoices consumer)

In only one case of institutional care was gate-keeping mentioned as a problem. The

son of the recipient of services reported that prior to hospital discharge, the family had

repeatedly asked a hospital social worker for information about nursing home care, but

the social worker ignored their request, choosing instead to promote hospice care. The

family had to seek information about nursing home care and make arrangements for

services on their own.

Below is a passage from a KII with a provider who intervened and arranged for a

hearing with DHS to find out why a HCBS recipient who applied several times for

ElderChoices and was finally approved was then notified two weeks later that she was

denied. The provider contended that the medical criteria for ElderChoices were too

restrictive.

Respondent (R): “I think when they do the hearings, like they did with her, … they need to be more … specific, like I said, I never did, we never found out a reason why she was denied. … [I]t was me and Ms. Smith4 and I believe [someone from] from DHS [maybe] were there, in the home,

4 Not her real name.

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and then we had two people on the phone that we were speaking to, I’m not sure, I can’t remember, I think it was.”

Interviewer (I): “Sure.”

R: “And one of them was the lady, the main person I guess, and one in the ElderChoices program. And we never did find out exactly why she was denied. They couldn’t ever tell me specifically why she was denied. We never got the answer that we were looking for, and were just told to reapply and they would check into it.”

R: “… [S]ome of the things, the way they approve people for this ElderChoices program doesn’t make a lot of sense to me. I mean … you have to be … incontinent and not be able to [clean] yourself up. Where to me, just because if you’re incontinent and you’re able to take your clothes off and put dry clothes on, it doesn’t mean you still don’t need help, you know what I mean? … I don’t understand exactly how they qualify different people for this program, because … there’s more extenuating circumstances than whether they can feed themselves, whether they’re incontinent, or whether they can walk by themselves. [T]hat’s the three, that’s what we have been told by DHS: That they have to be unable to feed themselves, that they have to be incontinent, and not able to clean themselves up… Well, Ms. Smith* at that time, when she first started applying, was able to do those things, but she was so short of breath, it might take her an hour and a half to take a bath, and it really wore her out to do that. So, I mean, I think we need to have a different set, like I said, on each individual basis instead of you know, just those three set things.” (Quote from a KII with a provider serving an ElderChoices consumer)

RECOMMENDATIONS:

Consolidate application for HCBS and institutional services into one process.

Conduct a cost-benefit analysis of standardizing the approval process for

Medicaid LTC, both institutional and HCBS, by requiring a face-to-face

assessment and counseling by an independent entity prior to authorization.

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Expand efforts to have a fast track process to speed access to services for those

in emergency situations and those being discharged from hospitals.

Adopt presumptive eligibility for HCBS waiver programs, so services can start

immediately for those who appear to be eligible, pending final determination.

Explore options for making temporary nursing home care available for individuals

awaiting HCBS eligibility approval such as allowing Medicaid reimbursement for

nursing home stays of less than 30 days.

KEY FINDING 2: Individuals in nursing homes may be remaining there beyond the time when they need that level of care.

Annual assessments by an independent entity are required by policy for consumers of

waiver services, but not for nursing home residents. A few providers reported that

nursing home patients who may have been well enough to return home remained

institutionalized because they were not regularly reassessed. Consumers and others

involved in making the decision about services did not explicitly raise this as a problem.

However, data indicated this might have been true in a few cases involving elderly

individuals and individuals with physical disabilities. All of these persons had entered a

nursing home because they needed skilled care. The ramifications of a person

remaining in a nursing home past the point of need are far greater than for one who

uses HCBS who has improved but continues to receive unneeded services. The

expense to the state for unneeded services is much greater in the former than the latter.

Further, the consequence to the nursing home resident who remains in that setting may

be that returning home becomes an impossibility, as described in this quote below:

“[W]e have clients in nursing homes … say the person may have been in the nursing home for 10 years, and then they go to the hospital because they fell and fractured their arm. Then we look at the application and say, ‘Oh, this person is

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up and walking? They are doing fine. They fractured their arm. We’ll give them 80 days convalescent care.’ At the end of the 80 days, that client is ready to go home. It could have been eight years earlier that they were ready to go home. Then all of a sudden we discharge them, and they can’t get paid anymore. Now, you know, they don’t have a home anymore, don’t have any assets whatsoever … [T]he nursing home is partly to blame. They knew that the client was no longer eligible, but since we don’t do any more reviews, those applications don’t come up anymore.” (FGD quote from a provider of services to adults with physical disabilities)

RECOMMENDATION:DHS should conduct a cost-benefit analysis of mandating annual reassessments of all

LTC service consumers.

KEY FINDING 3: Mechanisms for achieving income eligibility are available for consumers entering nursing homes that are not available for those seeking HCBC.

A few consumers reported having too much income to be eligible for HCBS, so they

ended up in a nursing home.

“No, we was gonna try to get somebody to come in the home and watch him … [S]he checked into a bunch of stuff, ‘cause she lives in Arkansas. … Anyway, he just made too much money … which is not enough … I don’t know how to put this, just because he worked hard all of his life and had a decent retirement, he’s penalized … [Y]ou gotta be dirt poor and on Medicaid in order to get anything nowadays.” (Quote from a KII with a relative of a nursing home resident)

RECOMMENDATIONS:

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Develop medically needy spend-down option, such as a Miller Trust, for persons

applying for home and community-based waiver services, comparable to what is

available for those going into a nursing home.

Adopt policies to protect spouses of Alternatives Waiver consumers from

impoverishment to be comparable to that available now for nursing home residents,

ElderChoices Waiver and DD Waiver consumers.

KEY FINDING 4: Overcoming system barriers sometimes required the intervention of someone in an advocate role.

Those in health and social services or family members often played this role, making it

possible for consumers to get needed services.

“See, my mom went with me cause she’s on disability, so she knows she knows all that stuff, so I didn’t know anything. If it wasn’t for my mom being on it already and knowing some of the stuff, I’d be lost. I mean I don’t know how people do it. If I didn’t have her, I wouldn’t have known what to do. It probably would have took me a year or two, maybe two years,to get what I’m getting now.” (Quote from a KII with an Alternatives Waiver consumer)

“… [W]e like to see the paperwork go through the system [so] our social worker staff will make calls and make sure it goes from here to here to here, because we certainly don’t want it to get misplaced and us not know … [have it] sit on someone’s desk for months, [so] we try to follow it along.” (Quote from a KII with a provider of services to adults with developmentaldisabilities.)

“…[T]hey took me out of the hospital, they took me in the convalescent center…I didn’t figure I’d ever come home. And the therapist told me…, ‘Don’t give up ’cause we’re gonna get you out of here.’ I said, ‘You think I could go home?’ And they said, ‘Yes.’” (Quote from a KII with an ElderChoices consumer)

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RECOMMENDATIONS Involve advocates and consumers in policy development aimed at system

change through forums and more balanced representation on decision-making

bodies that set LTC policy.

Improve consumers’ access to information about HCBS.

(We have devoted a separate chapter to this topic, because it comprises an important

area of our study findings and recommendations. See Chapter 7, Information

Dissemination and Counseling.)

Discussion of RecommendationsThe inequities between H/CB and institutional services and the impact on consumers,

as reported here, are not unique to Arkansas. Tonner and Harrington, in their study of

criteria used for determining need for LTC, note how differences in screening

procedures used for nursing homes and HCBS create bias and unequal access to

services.clxi Specifically, they state:

“The use of more stringent criteria, stringent methods of determining need, and longer forms for HCBS may make access to community care more restrictive than access to institutional care. Moreover, these HCBS procedures may require additional time, duplication of efforts, and be administratively cumbersome.”clxii

In another study documenting assessment methods used nationwide, Tonner and

Harrington found that only three states used a common application form for all LTC

services. This study concluded that most states used complicated and duplicative

screening and assessment procedures, which created a barrier to access for HCBS.

Addressing System Barriers. In Arkansas, efforts have been initiated to eliminate

system inequities that act as barriers to HCBS. These initiatives, as well as others on

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the federal level, should be supported. For example, one of the top 10 priority

recommendations of the Governor’s Integrated Services Task Force (GIST) was to

reduce the response times for obtaining home and community-based waiver services.

Among their recommendations to accomplish this was the development of a fast track

pilot program for establishing eligibility for HCBS.clxiii In December 2004, the Division of

Aging and Adult Services launched a pilot program to test this concept in a Pulaski

County hospital and is exploring the possibility of expanding it to two other Pulaski

County hospitals as well as community service providers. Should this program prove

successful, it should be replicated in other hospitals throughout the state.

Presumptive Eligibility. President Bush’s Fiscal Year 2006 budget includes a

provision that would allow states to offer presumptive eligibility for home and

community-based waiver services as an option for institutionally qualified individuals

who are discharged from hospitals into the community. This proposal is aimed at

increasing the number of Medicaid beneficiaries who receive HCBS and is seen by the

administration as having no associated increased cost.clxiv The state should monitor this

item in the federal budget, and if approved as a state option, adopt it as a means for

increasing access and leveling the playing the field for HCBS.

Reassessment.

The DHS should continue to study the cost-effectiveness and consumer benefits of

face-to-face assessments and counseling by an independent entity prior to entry into an

institution. Similarly, equalizing the requirements for periodic reassessments of all LTC

recipients should be explored. Currently, there is no required period of re-evaluation of

nursing home residents, but rather the Office of Long-term Care determines each case’s

re-evaluation date, for which the provider must submit justification for continued

institutionalization. In contrast, annual reassessments are conducted annually by DHS

for all waiver service recipients. A policy change is currently being considered that

would relax the requirement for annual reassessments for some HCBS consumers with

chronic conditions.clxv Because these consumers’ need for services does not diminish

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from one year to the next, conducting these reassessments on an annual basis may not

be the most efficient use of staff. Therefore, review of this policy is recommended.

Were DHS to explore more cost-effective ways to administer consumer reassessments,

one option would be to study using MDS data for nursing home consumer

reassessment.

Miller Trust Option. One policy change that can easily be implemented to improve

access to HCBS is to extend the Miller Trust option to those seeking HCBS. In some

states, if a person who needs nursing home care does not qualify because his or her

income exceeds the limit, he or she can establish a Miller Trust in order to qualify. The

trust, authorized by legislation passed by Congress, can be used to cover specific costs

such as support of a spouse still living in the community. The remainder of trust funds

must be used to pay Medicaid, either annually or at the death of the beneficiary. Some

states, including Texas, allow Miller Trusts for eligibility of HCBS. Arkansas allows this

option for those desiring nursing home care, but not for those interested in home- and

community-based waiver services.

Spousal Impoverishment. In Arkansas, inequities also exist regarding spousal

impoverishment, or “spend down,” provisions for the various LTC services. It is offered

to applicants to nursing homes as well as two waiver programs, ElderChoices and that

for adults with developmental disabilities. However, Alternative waiver consumers are

not entitled to the same.

Arkansas is not alone in having unequal access to this mechanism for increasing

financial eligibility for services. A study by the National Academy of State Health Policy

in 1996 revealed that only 15 states allowed individuals to “spend down” their incomes

to gain Medicaid eligibility for HCBS, while 29 states permitted such options only for

persons seeking nursing home eligibility.clxvi This study also reported that only 34 states

protected spouses of HCBS waiver recipients from impoverishment, whereas spouses

of nursing home residents are protected from impoverishment by law in all 50 states.

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Efforts should be made to rectify this inequity among the waiver programs and to extend

the Miller Trust option and protection from spousal impoverishment to all HCBS

consumers.

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Chapter 7Information Dissemination and Counseling

Perhaps the most consistent finding coming out of the primary data collected in this study

was the crying need of consumers and those providing informal support to have access to

information about the home and community-based services (HCBS) available and

counseling on how to access the services most appropriate for their needs. This theme

resonated with the theme of an unlevel playing field described in Chapter 6 in which

information about institutional care was clearly described as available and easy to obtain.

This was in contrast to the many difficulties respondents described in finding out about

HCBS options available to meet their needs.

This section describes three overarching key findings related to information and

counseling needs. Specifically, many respondents reported that information about

HCBS is difficult to obtain and traditional sources were sometimes unhelpful. In

addition, these data indicate that while physicians often played an influential role in

service decisions, their impact was decidedly weighted toward institutional care.

Findings presented are those for which programmatic and policy changes are most

likely to have an impact. The quotes chosen for presentation are among the most

illustrative of the findings they support. (Please see Chapter 2 for a fuller description of

the data sources and analysis methods.) To protect the identity of study respondents,

gender is concealed by random assignment of gender-specific pronouns and

pseudonyms in quotes and other text describing cases.

Recommendations were developed in the context of these findings with input from the

Advisory Working Group (AWG) and through reviewing the published, as well as

unpublished, literature for recommended best practices. Recommendations are made

for each key finding and discussed at the end of this chapter.

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KEY FINDING 1: Many respondents used multiple, informal sources of information about long-term (LTC) services instead of going to one formal source to get answers about care options.

Many respondents seeking information about LTC options relied on multiple sources,

either because they did not know how to access the formal system, or the formal

system lacked information about the services they were seeking. Those information

sources included family and friends, co-workers, health care and social service

providers, as well as past experiences with LTC services. The Internet and news media

were mentioned by very few respondents as usual sources of information about LTC.

For nursing home care recipients, obtaining information and making arrangements for

services seemed to be a relatively straightforward process, whether family decision-

makers handled everything or had the help of a social worker or other provider. Finding

out about HCBS, however, was often described as a circuitous, haphazard, and difficult

process for study participants seeking such care. The difficulty respondents

encountered is apparent by the variety of information sources employed as they tried to

inform themselves about services: A total of 20 different sources were cited by those

who sought HCBS, compared to 10 total reported by users of nursing home care.

A lack of readily available information about the LTC system and how to access it was

reported by some respondents:

“I work in Head Start and I’m considered a social worker, so I have a little bit more resources that I can call. … You know, pick up a telephone book and try to find something in the telephone book, but you know …you don’t see nothing on TV, you don’t hear nothing on the radio about living arrangements for the elderly or nothing like that.” (Quote from a key informant interview [KII] with a relative of a nursing home resident)

Others reported frustration in trying to link up to the appropriate agency:

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“… I was just needing some help with him and, and so I tried, and youknow, you just and seemed like a lot of the times I just chasing myself because some of them would even refer me back to where I had already been.” (Quote from a KII with a relative of a Developmentally Disabled

Waiver consumer)

This quote illustrates the approach used by some consumers to get information about

services:

Interviewer (I): “… [W]hat [is] the main way that you obtain information about services and look into programs?”

Respondent (R): “… [P]artly through the Internet, I have learned to utilize that. … I know advocacy organizations like … Pathfinders … [P]eople like that are a good source … to tap. If one doesn’t know, … I keep looking … [T]he best source is other parents, but again, for adults [with developmental disabilities] … When I was checking

about [her son’s] replacement wheelchair, the guy who was fitting his

wheelchair has a handicapped daughter and was telling me how they funded her van, so that you know, again, that’s where you get your real information.” (Quote from a KII with a relative of a Developmentally Disabled Waiver consumer)

RECOMMENDATIONS: Educate the public about HCBS options and related resources:

Use a multi-pronged approach aimed at many outreach channels and

points of access to reach the largest audience possible.

Use established networks, agencies and organizations where contact with

those in need of services is likely, such as government offices, senior

volunteer projects, religious centers, legal and other advocacy

organizations, and housing projects.

Advertise the DAAS/DDDS www.argetcare.org website and toll-free phone

line.

Display information about these resources in the Helpful Numbers blue

book pages phone directories statewide.

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Consider revisions to the DHS/DAAS State Office listings to make it easier

for consumers to identify the appropriate agencies.

Explore community outreach services that use lay workers and counselors to

help consumers, especially those of underserved populations:

get information and access to LTC services, and

navigate the LTC service system.

KEY FINDING 2: Many respondents reported that formal sources were sometimes not helpful in providing the information they sought about HCBS.

Many consumers of HCBS reported that they had difficulty getting information about

HCBS or that they found the application process confusing, whereas few consumers of

institutional care reported this problem. The following is a quote from an interview with

a disabled individual. He reported that he was in contact with DHS for a year before his

caseworker told him about the Alternatives Waiver.

R: “I mean you know, nobody had ever mentioned that [and we] came in before for over a year … When we went to Ruth5 up there that day, I had an appointment up there that day. And [S]he just you know, she mentioned it, you know, while we was sitting in there … [S]he had some more papers for us, and [Mother] just casually kind of mentioned, ‘I’m tired you know, I’m having to go over there and help him you know. my son’s are going by, my daughter’s going by, their wives are going by and we just …’ [A]nd you know, it wasn’t really so much saying, ‘We need help,’ it’s just she mentioned … and finally [the caseworker] said, ‘We can get you help for where it won’t be so hard on you.’”

I: “Was that the first time anybody had ever…?”

5 Not real name.

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R: “That was the first time anybody [came] and was talking to me, it was a year ago, little over a year. She said, ‘They should have notified [you] February of last year … when you went in [to] help get your bills paid and all this and why they didn’t notify [you]? We could have been helping you the whole time.’ Nobody said a word. I mean not one word about ‘there’s a program we can get you on.’” (Quote from KII with an Alternatives Waiver consumer.)

Although a few recipients of HCBS commented on the helpfulness of Arkansas

Department of Human Services (DHS) field office workers, just as many said that DHS

workers were unaware of, or unable to explain, waiver program options to them. They

complained that they filled out forms, but they – and the DHS worker – did not

understand what they were applying for. In the KII interview excerpt below, a consumer

and a relative relate their conversation with a DHS worker about the Alternatives

Waiver.

Respondent (R) 1: “… [The DHS worker] said, ‘Well who is this, what is it?’ Well, I felt like she should know, because she’s the one [who] gave me the paperwork.“ R2: “They didn’t understand it either…”

Interviewer (I): “The Department of Human Services themselves did not know?”

R1: “No, they did not ... They didn’t know how to explain it or didn’t know what they had. That’s true.” (Quotes from KII with an Alternatives Waiver consumer and a relative)

The same participants made the point that other providers outside the formal social

services system lack the knowledge about waiver services and other issues related to

HCBS:

R: “The free clinic in Smithville6 – they’re great people, doctors and nurses and everybody giving their time and doing it

free. Well that’s great, but they, they need to understand there are other places these people can go that need some help, they may not know about. And this is one of things that I think they need to know.”

6 Not real name of place.

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I: “About the Waiver services.”

R: Right. Because they didn’t understand it. Even my druggist didn’t understand it when I told him I could get six prescriptions with my Medicaid. He said no, only three, I said no, six. We had a little discussion about it, he didn’t think I knew what I was talking about, but I did. He’d never heard of it before …” (Quote from an Alternatives Waiver consumer)

Here is a quote from an individual with a physical disability, describing her frustration

with not being able to get, from a DHS office, a comprehensive understanding of all the

LTC options available to her – and her suggestion for improvement:

“ … [R]eally it’s lack of knowledge … me and my [relative], we didn’t know of any other programs to apply for. We went down to …the office down there and apply for the main, the basic Medicaid. So it’s not like you can go down there and choose different – they don’t have like a big information center that says, ‘We’ve got all these programs, which one fits you?’ They don’t have that. You go down there, and you file for basic Medicaid, then when you’re denied that,you’re asking your caseworker, ‘Hey, what can I do?’ If they, theyhad a big bulletin down there with 60 different things you could applyfor, based on say, say 10 items that fit your profile, you would knowwhat to apply for.” (Quote from an Alternatives Waiver consumer)

RECOMMENDATIONS:

Educate DHS field office workers about waiver programs. Promote their use of

the DAAS/DDDS www.argetcare.org website, toll-free phone line, and printed

materials that explain the waiver programs and other HCBS.

Educate social service providers (e.g., hospital social workers, discharge

planners, various agencies that serve the elderly and adults with disabilities)

about the viability of HCBS options, as well as related resources. Promote use of

the DAAS/DDDS www.argetcare.org website, toll-free phone line, and printed

materials on the waiver programs and other HCBS.

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KEY FINDING 3: Physicians played an influential role in decision making about LTC, but not for accessing waiver services.

Physicians often played an influential role in consumers’ decisions about the LTC option

they chose. Most cases reported that their physician was in some way involved in the

decision about services. In a few cases, respondents named the physician as the most

important person in the decision, outside of the immediate family. However, the data

strongly suggest that physicians’ knowledge about HCBS was limited to Home Health

Care. In the vast majority of cases in which the physician did make a recommendation,

it was for nursing home care. No case reported that the physician was a source of

information about, or recommended, a waiver program.

“We don’t know about a lot of these services, and that’s nobody’s fault – well, maybe it’s our fault, but if we don’t know about them, we are going to be less apt to begin a service that we are not even familiar with. …I utilize our Area Agency on Aging. … If I had to do that on my own, if I didn’t have them to do that for me, there would be a lot of patients that wouldn’t get anything …” (FGD quote from a physician)

“… I think we have neglected to educate our physicians, our hospitals, even our social workers, our discharge planners, our community organizations. They know, ‘You go from the home to the nursing home.’ They don’t know in between … they have no clue what the resources are, how to get them, who to call, period.” (Quote from a Focus Group Discussion [FGD] with a provider of services to the elderly)

RECOMMENDATIONS: Implement multi-faceted promotions of sources of information, about LTC

services to physicians, nurses, and their support staff, including:

the DAAS/DDDS www.argetcare.org website

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toll-free phone line

display of information about these resources in the Helpful Numbers blue

book pages phone directories statewide.

Educate physicians, nurses and their support staff about the full array of HCBS

through multiple approaches, such as:

presentations at state and regional meetings of the Arkansas Foundation

for Medical Care and the Arkansas Medical Society;

continuing medical education courses; and

academic detailing as is offered by pharmaceutical companies on the

options available.

DISCUSSION OF RECOMMENDATIONS

By virtue of the fact that nursing homes exist in many communities and are visible,

obtaining information about nursing homes is relatively easy. Local nursing homes can

easily serve as the first point of contact for information about services and the

application and eligibility process. With that initial nursing home contact, a consumer

can be directed to other resources or agencies that may be needed in making

arrangements for admission. In contrast, information sources for HCBS can be hard to

locate and arranging for services often is a fragmented process. This is true because, in

part, assembling the full of complement of services that an individual needs may require

accessing more than one program. However, the way for the consumer, and those in

the role of assisting them, could be smoothed by simplification of what it takes to get

information, augmented by outreach so that consumers – and providers – know where

to begin the process. One-stop and easy-to-access information sources for consumers

and providers; outreach, public promotions, and education of providers; and use of lay

workers to inform and counsel those seeking LTC services all have potential to improve

access to HCBS options.

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Using Information Technology. Even in this digital age, the telephone is often the

way people get information when they are seeking specifics about social services and

eligibility, and our data support that. Therefore, telephone directory listings – both the

Helpful Numbers/Blue Pages and the State Offices NEW listings – should be as user-

friendly as possible so that consumers can easily locate the agency that has the

services they need. Consumer input in designing and evaluating these services could

be of great value.

The DAAS/DHS www.argetcare.org website is a useful, but most likely underutilized

resource for information about HCBS available. Though it has been available for some

time, it has not yet been officially launched, much less evaluated.clxvii This resource

should be finalized, promoted to the public, and its impact assessed. The low number

of study participants who reported using the computer as a source of information about

LTC services may in part be a function of low public awareness that the website exists.

With sufficient promotion and advertising, the site may become a popular tool for

consumers with internet access. It offers a self-assessment tool that enables

consumers to be directed to the appropriate link, based on circumstances and need,

rather than having to randomly surf the site. Certainly the website should be vigorously

promoted to health care and social service providers as a one-stop resource and link to

related sites.

Direct Outreach. Many Arkansans who need to be connected to LTC services are

without a computer – or in some cases, even a telephone – or may lack the literacy

skills to independently gather information from social service agencies. Lay workers

can step in to fill the information gap for those who may otherwise have difficulty

accessing the LTC system and to reach underserved and minority individuals who may

have less trust in the traditional social services and health care system. Early findings

from a five-month lay worker pilot project in the Arkansas Delta shows promise as a

model to pursue. Lay outreach workers called Community Connectors linked people

with needed health and social services, especially long-term HCBS.  Using only five

workers, this pilot was able to divert from, or transition out, 11 persons from nursing

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homes.clxviii A Robert Wood Johnson Foundation funded three-year demonstration using

this model is scheduled to be implemented in May 2005.  An evaluation of the cost-

effectiveness of this model demonstration will be conducted by the UAMS College of

Public Health. Data from this study should shed light on the impact of lay outreach

workers in linking persons to HCBS and reduce unnecessary institutionalization.

Several other states with CMS grants now employ lay workers, also known as “peer

counselors.” Wisconsin, in its 2001 Nursing Facility Transitions State grant, had a

provision for “increasing the availability of peer counseling for consumers, guardians,

and families to help them when making decisions regarding community placement and

adjustment.”clxix New Hampshire, in its 2001 Real Choice Systems Change Grant,

provided “education, peer counseling, and outreach [about consumer-directed services]

to persons with mental illnesses.”clxx And Maryland, in its 2001 Nursing Facility

Transitions Independent Living Center Grant, provided “face-to-face peer counseling

sessions with individuals interested in learning about community options” and

“developed a peer counseling relationship for those who wish to discuss concerns and

fears about transitioning.”clxxi

Lessons Learned from Survey of States’ Approaches. Traditional approaches to

public outreach can also be effective in raising consumer awareness about LTC options,

both institutional care and HCBS. A survey conducted in 1998 to explore methods used

by states to educate and enroll eligible Medicaid beneficiaries for dual Medicaid benefits

yielded some lessons that may also apply to outreach about long-term care services,

especially those for older persons: 1) The survey, to which 42 states responded,

showed that most states used a combination of materials and approaches to educate

consumers, and that most techniques (described below) proved to be moderately

successful; 2) the stigma commonly associated with programs for low-income persons

should be considered when designing outreach programs. States reported that

potential beneficiaries are reluctant to discuss program benefits and eligibility

requirements in front of peers; 3) partnerships with other service providers and

organizations, which may involve creation and well as distribution of materials, enhance

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effectiveness of consumer outreach; and 4) many states reported making the

application process easier and more convenient by increasing the number of sites

where application could be made.clxxii

The outreach methods most commonly reported by states are highlighted below. The

average cost of all of these approaches was reported under $10,000 with the exception

of the toll-free line, for which the average cost was $25,000:

Eighty-two percent of states used brochures, information sheets and posters to

inform consumers. Brochures and posters disseminated at government offices,

presentations, and mailings were regarded as inexpensive but only moderately

effective. States reported that use of brochures and posters was only effective if

combined with other techniques. A small number of states that experimented with

inserting flyers into utility bills rated the method as highly effective.

Sixty-four percent of states reported using direct mail. Effectiveness scores for

direct mail methods varied widely across states – from extremely effective to not

at all effective. Despite the advantages of relative low cost and wide reach, most

states did not find that there was a significant increase in eligibles after a direct

mail campaign.

The 33 percent of the states that published notices in newspapers or other

publications rated the approach as relatively low-cost. The impact was not

always significant but moderately effective overall.

Periodic or one-time direct mailings to providers were employed by 27 percent of

the states. The method was rated as moderately effective and relatively low-

cost.

Presentations were used by 15 percent of states. States reported that the

positive effects of such an approach are not always immediately evident but

favored it as a way to have direct dialog with consumers.

A number of states reported having a toll-free line, but only two of the 42 states

participating in the survey reported using it for outreach, but rated it as highly

effective.

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Other methods were tried by states to reach potential dual eligibles. A few states

conducted targeted mailings, with application forms enclosed, to participants in

other programs for older citizens and rated this method as highly effective. Some

states had information posted on web sites but felt that this was a poor way to

reach older people. Radio and television public service announcements were not

rated highly because there was no control over broadcast times, which tended to

be hours when audience levels were low.

Other recommendations from the state survey included:

Test market materials with focus groups matched on age and income of target

population.

Be concise and use fonts and colors that are easy to read and appealing to older

persons.

Design materials to target not only potential recipients but also family members.

Use a multi-pronged approach aimed at many outreach channels and points of

access to reach the largest audience possible.

Use established networks, agencies and organizations where contact with elders

is likely, such as government offices, senior volunteer projects, religious centers,

legal and other advocacy organizations, and housing projects.

An important key to better information dissemination about LTC options is continuing

education of those who serve the elderly and adults with disabilities. Groups that need

to be targeted include physicians, nurses, their support staff, pharmacists, DHS field

office workers and others employed by state agencies and private, non-profit social

service organizations, and hospital discharge planners and social workers. Public

schools that serve students with disabilities also need information about LTC services

and resources.

Making the public and providers aware of HCBS options is a challenge when so much is

competing for their attention. Keeping them apprised of policy and program changes is

a constant demand on limited state resources. But the investment can yield significant

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savings in the long term and improved services to Arkansas’ elderly and adults with

disabilities. “The price of a hasty or uninformed decision about long-term care

alternatives is often the independence, dignity and health of oneself or a loved one.”clxxiii

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Chapter 8 Improving Services to Meet Unmet Need

The third theme threading its way through our respondents’ narratives was a call for

expansion of available home and community-based services (HCBS) and increased

flexibility of waiver services. The need to improve services is illustrated by stories of

individuals who, in order to remain at home, needed more intensive services, but required

less than the around-the-clock care of a nursing home. Others needed assistance with

administering medications or environmental enhancements beyond what the waiver would

cover. There were also a number of institutionalized individuals who might have managed

well in an assisted living setting.

This section presents five key findings related to the need to improve services by

expansion in three areas: assisted living, HCBS and services for non-elderly,

institutionalized adults with physical disabilities. Findings presented are those for which

programmatic and policy changes are most likely to have an impact. The quotes chosen

for presentation are those that were among the most illustrative of the findings they

support. (See Chapter 2 for a full description of the data sources and analysis methods.)

To protect the identity of study respondents, gender is concealed by random

assignment of gender-specific pronouns and pseudonyms in quotes and other text

describing cases.

Recommendations were developed in the context of these findings with input from the

Advisory Working Group and through reviewing the published, as well as unpublished,

literature for recommended best practices. Recommendations are made for each key

finding and discussed at the end of this section.

KEY FINDING 1: Among study participants, there was an unmet need for assisted living.

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Many consumers said that they would likely use Medicaid-covered assisted living, if it

were available.

The following quotes are from a KII with a friend of an individual with a physical

disability who was in a nursing home. The friend is responding to being asked whether

she thought the individual would be a good candidate for assisted living.

“… [T]hat would be excellent, that would help out … like you wouldn’t believe … It is so limited, it’s terrible the way it’s limited these folks … I would love to see Chris7 in assisted living. [Chris] would do great, you know.” (Quote from KII with friend of an individual with a physical disability, residing in a nursing home.)

She goes on to express her views on the need for expansion of Medicaid-assisted living:

“…[Y]ou had a system set up where there was like assisted living places for individuals that did not meet nursing home criteria, … but were like on the verge of the money line or whatever the policy was, then they could pay on a sliding fee scale. But there’s not enough places for individuals like [that]. … [T]he people that seem to be disabled … just borderline competent, these are the people that I see suffer.”

RECOMMENDATIONS:Request the Health Services Permit agency to increase the bed need methodology to

allow greater access to assisted living.

Expand the number of affordable assisted living beds available to individuals with low

and moderate incomes, including those who are eligible for the Medicaid Assisted Living

Waiver.

7 Not real name.

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KEY FINDING 2: HCBS use could be increased through selected expansion of services. The majority of consumers in institutions chose to go into a nursing home, even though

they wanted to stay at home, because they felt they needed 24-hour care. In particular,

respondents who were in a nursing home because of a physical disability (or others

involved in the decision about services) expressed interest in services that would enable

them to return home. Determination of respondents’ actual physical capability to live

more independently was outside the scope of this study. However, in a few cases, it did

seem that institutionalization was not appropriate, for which there are several possible

explanations. Either the crisis that had necessitated placement had passed, those who

made the decision about long-term care (LTC) were unaware of alternative services, or

certain services required to stay in the home were unavailable.

Many respondents, when asked, “What would/does it take for the client to be in a home

setting?” offered a laundry list of needs, some of which were not adequate in HCBS.

These include:

Medication reimbursement, management and administration

Dental care

Creating a disability-friendly environment.

Respite care

The need for medication administration, which largely by state law is allowed only by

RNs, can be the determining factor in whether a person is able to maintain

independence in the community or enters a nursing home.

“Actually so she was about to go back into the institution and literally what saved her is her mother … moved back to the town where she was, and Mom stepped in and Mom was going over to her house everyday and giving her shots. But if Mom had not been able to do that or wasn’t willing to do that, she would have been back in.” (Quote from a FGD with

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providers of services to the adults with developmental disabilities)

The following is a quote from the foster parent of a former HDC resident describing the

arrangements that had to be made regarding the consumer’s dental care prior to the

transition.

“Danny8 has some ongoing dental issues that we were able to work with even through the pilot and the transition. …__ [T]hat’s one of the downfalls to our system, dental care. It’s very hard sometimes outside a place like this. …So we wanted to make sure that those things were taken care of before she left.” (Quote from a KII with the foster parent of a Developmentally Disabled Waiver consumer)

Getting assistance obtaining various kinds of equipment to make the home environment

handicap accessible was a problem raised by a few consumers or their family members.

“Because see if I can have somebody build me a ramp, then um, he can’t go down steps, like I say, I need two people to help him go down the steps, but if I had a ramp… [W]ell she did call me back about the ramp, and she said that it’s just so many people need them you know. … [S]he said …they said they’s getting around to it, but she said it’s just so many people that need them.” (Quote from a KII with a relative of an ElderChoices consumer)

  

Families who provide home care for individuals with developmental disabilities often

experience chronic stress and fatigue. The caregiver of an individual with disabilities,

made this suggestion:

“[To have] the option of both nursing facility or group home or just whatever level of care there is outside the home, and that maybe sometimes it’s appropriate for a client to move … away from the home setting and then to move back home, when the caregiver just needs a break for awhile. There needs to be some option – now that we don’t have extended

8 Not real name.

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families within our community – we need something that meets that need. You know if it could be a facility where a client can check in for six months, or six weeks, or even a week … .” (Quote from KII with the caregiver of a Developmentally Disabled Waiver consumer)

RECOMMENDATIONS:

Give waiver nurses more flexibility to develop individualized care plans sufficient

to keep people in their homes or a community setting.

Train nurses in person-centered care.

Increase flexibility.

Encourage use of individualized care plans.

Adopt policies that afford more intensive HCBS (in hours and range of services)

for certain individuals. For example, ElderChoices nurses should be able to

authorize more than 64 hours of personal care per month without having to

request authorization for increased benefits.

Explore more flexible options to facilitate administration of medications in HCBS

settings:

Examine how the Nurse Practice Act could be broadened to allow personal

care aides and CNAs under RN supervision to dispense medications and

perform non-invasive procedures.

Broaden waivers to permit medication management for chronic conditions

and time extensions for Home Health services.

Make it easier for caregivers to receive increased hours of Medicaid-

reimbursable home and community-based respite services than are currently

available for ElderChoices and DD Waiver consumers.

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Adopt policies to make respite care a standard, more “intentional” offering of

nursing homes, emphasizing their role in short-term recuperation and respite.

For example, create special respite sections or wings of nursing home facilities

for temporary placement of consumers to reduce apprehension about nursing

home admissions.

KEY FINDING 3: Some of the needs of non-elderly, institutionalized adults with physical disabilities are not being addressed.

A few providers reported that young people with physical disabilities who reside in

nursing homes were not getting their social and cognitive needs met in that

environment.

A few providers also reported that young people with physical disabilities who reside in

nursing homes are often perceived as disruptive by the older residents and staff.

These findings were drawn from both the FGDs with LTC service providers and KIIs

with cases involving young persons with physical disabilities.

“It’s very difficult to meet the needs of some of those residents because you are not used it. You don’t have a lot of the training to deal with the psycho-social needs of the younger person. … Not too many of them want to play bingo and go to certain activities that are geared to the elderly population. … It is difficult for them to be happy in that surrounding, and then it opens up the geriatric population into a whole set of issues when you have younger people in that setting.” (FGD quote from a provider of services to adults with physical disabilities)

“ …Then a lot of family members don’t like to put their family members in those type facilities, but then we have nowhere else to put that population of people.” (FGD quote from a provider of services to adults with physical disabilities)

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“There’s gotta be programs for people my age and even people 40 or 50. You know, how would I fit in there with a bunch of older folks is my issue? If they had one with younger people, that would be really good, ‘cause you could communicate on your level. …[Y]ou know, if there’s a 50-year gap between me and the other people around me is, it might create a problem. …I don’t want to go around offending anybody, and the same with them you know, they might look at me or the clothes I’m wearing or you know, what hair cut I got, and think, ‘This guy’s weird, he’s strange, he’s crazy, he might hurt us.’ I wouldn’t want nobody to think that about me.” (Quote from a KII with an Alternatives Waiver consumer)

RECOMMENDATIONS: Provide more alternatives to the nursing home for non-elderly adults with

physical disabilities that offer greater independence, nursing and personal care,

and opportunities for interaction with same-age peers, such as group homes and

assisted living.

KEY FINDING 4: A few HCBS consumers reported problems finding reliable, competent direct service workers.

The majority of respondents who used HCBS expressed that they were satisfied with

the care they received; however, a few were not, as illustrated by these quotes:

“And, they cleaned the house, help me take a bath…[T]hey did a good job until she started watching my soap operas and not doing her job. That’s when she got fired … I called the people and told them I need help … and they said they were all tied up, they didn’t have no vacancies … [I]f that lady could have done her job, I probably wouldn’t be here [in a nursing home] today.” (Quote from KII with a nursing home resident)

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“Of course I’m one of the fortunate ones that I had good help. Not good help, but good helpers that have helped me be able to look to the future. But I’ve seen a lot of men and women that the helpers come in and they weren’t interested in trying to help them live for a future, all they was interested in doing is run in and run out and get their money.” (Quote from a KII with an ElderChoices consumer).

RECOMMENDATIONS:

Explore options for improving wages and benefits for both institution-based and

HCBS direct service workers.

Develop policies to address issues of competency, trustworthiness and reliability

of aides and private HCBS agencies:

Offer training and credentialing for HCBS care aides, reimbursed by

Medicaid.

Require HCBS providers to do background checks.

Discussion of Recommendations

Assisted Living. The Assisted Living Waiver has 395 slots available, 90 of which were

being used as of December 2004.  Arkansas is one of only three states with a “high

privacy/high service” model of assisted living—although the service portion is voluntary

on the part of the facility.  All new construction must offer private rooms, private baths,

and kitchenettes.  Arkansas facilities are permitted to administer medications and

provide limited nursing care, though many other states prohibit this.  While facilities are

not required to offer these services, if they accept a waiver client, they are required to

do so. Therefore, a high privacy/high service model does exist for Arkansas Medicaid

clients.

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While most of the growth in assisted living has primarily been in the upper and upper-

middle priced market, creating affordable assisted living is much more challenging.

There are numerous barriers to creating affordable assisted living including:  1) limited

financing mechanisms; 2) conflicting state and federal regulations; 3) lack of “mission

driven” entities willing to take on affordable assisted living with its slim return on

investment; 4) lack of knowledge about tax credits; and 5) difficulty selling tax credits for

assisted living.

The need for affordable assisted living is high. An April 2004 review by Health Policy

Tracking Services found that estimates of the average cost of assisted living ranged

from approximately $2,100 to $2,900 a month.clxxiv Most residents are over the age of

75. Almost 62% of Arkansas householders above 75 years of age have incomes of less

than $25,000, making most assisted living facilities out of their reach financially.

The state Permit of Approval (POA) requirement is a potential barrier to achieving

sufficient numbers of beds for Medicaid clients because low service models can

potentially take up these beds without meeting the need for an alternative to nursing

home care.  There are currently 1,700 approved beds in Arkansas. While the current

POA methodology is based on 15 beds per thousand, a recently completed study of

Arkansas demand for assisted living estimates the number of beds needed to be two to

three times this number.clxxv The methodology contained in this report shows a net need

between approximately 7,700 and 12,000 units based on population projections for

2004.

Expanding Services. Many consumers in institutions we spoke with in our study chose

institutional care in spite of their desire to stay at home, because they or their family felt

that they needed 24 hour care. It is likely, however, that some of these individuals could

have been served well in an HCBS setting if they had been provided with counseling

and services designed through a person-centered care approach and development of

an individualized plan of care.

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Person-centered care has been described by Fabiano as a model of care that “focuses

on the value of each individual [and] involves respecting and honoring the uniqueness

of each person and allowing him/her to be involved in decisions that have an impact on

his/her life.”clxxvi Nissenboim describes eight components that are integral to person-

centered care:

“ 1. Upholding the value of the person regardless of the level of functioning.

2. Immersion of interactions in core psychological needs (love, comfort, attachment, inclusion, occupation and identity).

3. Promotion of positive health. 4. Reframing “problem” behaviors as a demonstration of a need being

communicated. 5. Reframing “problem” behaviors as an opportunity for communication

with caregivers. 6. Recognition that all action is meaningful. 7. Hiring of staff who demonstrate emotional availability to persons in

their care. 8. Integrate all elements of positive person work.” clxxvii

Training waiver DHS nurses in these approaches and giving them flexibility and

encouragement to work with consumers to meet the needs critical to their staying in the

community will help to meet a number of unmet needs.

Broadening responsibilities of Personal Care Aides and CNAs. Revising the Nurse

Practice Act was one of the ten priority recommendations of the 115 overall

recommendations made as a result of the Olmstead Decision by the Governor’s

Integrated Services Taskforce (GIST). Specifically, the GIST suggested following the

model established in Tennessee which extended training and licensing of CNAs to allow

them to perform certain tasks to relieve the workload of nurses and protect them from

liability.clxxviii

At the time of the writing of this report, the 2005 Arkansas General Assembly was

considering legislation that would broaden the Nurse Practice Act. Should that

legislation fail, efforts to address concerns and try again in the future should be

undertaken.

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Direct Service Workers. While the issue of staffing for HCBS was not the focus of this

study, the issues of worker availability and quality of care were mentioned in a few

interviews and are clearly important factors in access and consumer satisfaction, both of

which can impact service use. The GIST Staffing Subcommittee studied this issue

extensively and made recommendations reported in the Arkansas Olmstead Plan.clxxix

They reviewed several initiatives and programs underway at the time of their report to

address recruitment, retention, education and training of direct service workers. The

Division of Developmental Disability Services had a grant with Partners for Inclusive

Communities (UAMS) to implement a recruitment campaign to change attitudes about

care-giving and to train direct support professionals working with persons with

developmental disabilities. The Department of Human Services has a new grant

underway which will continue to work on these issues.clxxx

While recommendations have been made to examine methods to enhance workers’

wage and benefit levels,clxxxi we are unaware of any current initiatives underway seeking

to address this issue.

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Chapter 9Conclusion

This study was initiated to provide a better understanding of why people in Arkansas

use the long-term care (LTC) services they do. Unpaid, informal caregivers provide, by

far, the greatest amount of long-term support for elderly and non-elderly adults with

disabilities in need of such care.clxxxii,clxxxiii,clxxxiv Many of the findings of this study point to

ways the formal system can supplement the support of informal caregivers more

effectively for those consumers who are eligible for Medicaid reimbursed services.

These findings, and the recommendations to address issues they raise, are described in

detail in this report and summarized in the executive summary and will not be repeated

here. Rather, this chapter is intended to focus on the loose ends not fully dealt with, to

identify study limitations, and to point to further work that may need to be done to

support implementation of the recommendations made.

This study clearly identified physicians as very influential “key players” in decisions

made about long-term care. However, it was outside the scope of this study to explore

the literature concerning the physician’s role, knowledge, and attitudes in these

decisions. More work is needed to examine what intervention research may have been

conducted to determine best practices to improve physicians’ communication of LTC

options to consumers and families, and to broaden their patterns of referral to be more

inclusive of HCBS. Much research has been done to determine the most effective

methods of influencing physician practices related to counseling and referral for other

problems (e.g., depression in primary care). Perhaps findings from these other arenas

could be explored to determine their applicability to LTC.

Regarding improving services, there is clearly a need to expand the scope and flexibility

of services to overcome barriers to HCBS. Policy makers will need to balance the

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increase in cost inherent in expanding HCBS with the subsequent decrease in long-term

institutional care that will provide resources to pay for improved HCBS. This report has

made several recommendations along these lines. Some actually require expanding

services, while others involve a change in the culture and attitudes of gatekeepers

regarding HCBS options. These latter changes will depend on the extent to which

social service workers are trained, encouraged, and enabled to do so by the system in

which they function.

i AcademyHealth. Glossary of Terms Commonly Used in Health Care. Washington, DC: Academy Health. 2004.ii Davis D, Fox-Grage W, Gehshan S. Deinstitutionalization of Persons with Developmental Disabilities: A Technical Assistance Report for Legislators. Washington, DC: National Conference for State Legislatures. No date. Accessed at http://www.ncsl.org/programs/health/Forum/pub6683.htm#execsum and verified on February 23, 2005.iii Harrington C, Carrillo H, Wellin V, Miller N, LeBlanc A. Predicting State Medicaid Home and Community Based Waiver Participants and Expenditures, 1992 – 1997. The Gerontologist. 2000; 40(6): 673-686.iv Miller B, Prohaska T, Mermelstein R, Van Nostrand JF. Changes in functional status and risk of institutionalization and death. Analytical and Epidemiological Studies. 1993;27:41-75.v Branch LG, Ku L. Transition probabilities to dependency, institutionalization, and death among the elderly over a decade. Journal of Aging and Health. 1989;1(3):370-408.vi Johnson RJ, Wolinsky FD. Use of community-based long-term care services by older adults. Journal of Aging and Health. 1996;8(4):512-537.vii Houde SC. Predictors of elders’ and family caregivers’ use of formal home services. Research in Nursing & Health. 1998;21:533-543.viii Kersting RC. Predictors of nursing home admission for older black Americans. Journal of Gerontological Social Work. 2001;35(3):33-51.ix Bradley EH, McGraw SA, Curry L. Expanding the Andersen model: the role of psychosocial factors in long-term care use. Health Services Research. 2002;37(5):1221-1242.x Kersting. 2001. See Reference 8. xi Dwyer JW, Barton AJ, Vogel WB. Area of residence and the risk of institutionalization. Journal of Gerontology. 1994;49(2):S75-S84.xii Kersting. 2001. See Reference 8. xiii Ibid. xiv Branch and Ku. 1989. See Reference 5.xv Dwyer, Barton, and Vogel. 1999. See Reference 11. xvi Rudberg MA, Sager MA, Zhang J. Risk factors for nursing home use after hospitalization for medical illness. Journal of Gerontology: Medical Sciences. 1996; 51A(5): M189-M194.xvii Black BS, Rabins PV, German PS. Predictors of nursing home placement among elderly public housing residents. The Gerontologist. 1999; 39(5): 559-568.xviii Pearlman DN, Crown WH. Alternative sources of social support and their impacts on institutional risk. The Gerontologist. 1992; 32(4): 527-535.

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This report reinforces the need for other policy changes that have been on the table

again and again in the past such as the need to broaden the Nurse Practice Act, the

need to improve wages and benefits for direct service workers, and the need to improve

the competency and reliability of such workers. While not a formal recommendation of

this study, it is clear that as HCBS expand, regulatory oversight and quality

improvement activities will be needed to assure that consumer health and well-being

outcomes are positive.

xix Weissert WG, Cready CM. Toward a model for improved targeting of aged at risk of institutionalization. HSR: Health Services Research. 1989; 24(4): 485-510.xx Aykan H. Do state Medicaid policies affect the risk of nursing home entry among the elderly? Research on Aging. 2002;24(5):487-512.xxi Coughlin TA, McBride TD, Liu K. Determinants of transitory and permanent nursing home admissions. Medical Care. 1990; 28(7): 616-631.xxii Hays JC, Pieper CF, Purser JL. Competing risk of household expansion or institutionalization in late life. Journal of Gerontology: Social Sciences. 2003; 58B(1): S11-S20.xxiii Kersting. 2001. See Reference 8. xxiv Steinbach U. Social networks, institutionalization, and mortality among elderly people in the United States. Journal of Gerontology: Social Sciences. 1992; 47(4): S183-S190.xxv Mor V, Wilcox V, Rakowski W, Hiris J. Functional transitions among the elderly: patterns, predictors, and related hospital use. American Journal of Public Health. 1994;84(8):1274-1280.xxvi Freedman VA. Family structure and the risk of nursing home admission. Journal of Gerontology. 1996;51B(2):S61-S69.xxvii Miller, Prohaska, Mermelstein , and Van Nostrand . 1993. See Reference 4.xxviii Branch and Ku. 1989. See Reference 5.xxix Dwyer, Barton, and Vogel. 1999. See Reference 11.xxx Black, Rabins, and German. 1999. See Reference 17.xxxi Pearlman and Crown. 1992. See Reference 18.xxxii Weissert and Cready. 1989. See Reference 19.xxxiii Aykan. 2000. See Reference 20.xxxiv Greene VL. Ondrich JI. Risk factors for nursing home admission and exists: A discrete-time hazard function approach. Journal of Gerontology: Social Sciences. 1990; 45(6): S250-S258.xxxv Kersting. 2001. See Reference 8. xxxvi Steinbach. 1992. See Reference 24.xxxvii Mor, Wilcox, Rakowski, and Hiris. 1994. See Reference 25.xxxviii38 Miller, Prohaska, Mermelstein , and Van Nostrand . 1993. See Reference 4.xxxix Weissert and Cready. 1989. See Reference 19.xl Hays, Pieper, and Purser. 2003. See Reference 22. xli Black, Rabins, and German. 1999. See Reference 17.xlii Aykan. 2000. See Reference 20.xliii Kersting. 2001. See Reference 8. xliv Steinbach. 1992. See Reference 24.xlv Freedman . 1996. See Reference 26. xlvi Pearlman and Crown. 1992. See Reference 18.xlvii Freedman . 1996. See Reference 26.xlviii Dwyer, Barton, and Vogel. 1999. See Reference 11.

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An important limitation of this study is its focus on those who are already receiving

Medicaid-covered services. All of the data analyzed and reported here were either from

Medicaid files (secondary data), providers of Medicaid services (focus group

discussions), or consumers and others involved in the decision about their care (key

informant interviews). This is an important limitation, particularly in light of the finding of

racial disparities in utilization of these services. There may be significant barriers to use

xlix Rudberg, Sager, and Zhang. 1996. See Reference 16.l Black, Rabins, and German. 1999. See Reference 17.li Bauer EJ. Transition from home to nursing home in a capitated long-term care program: The role of individual support systems. HSR: Health Services Research. 1996; 31(3): 309-326.lii Pearlman and Crown. 1992. See Reference 18.liii Weissert and Cready. 1989. See Reference 19.liv Aykan. 2000. See Reference 20.lv Ibid.lvi Coughlin, McBride, and Liu. 1990. See Reference 21.lvii Hays, Pieper, and Purser. 2003. See Reference 22.lviii Freedman . 1996. See Reference 26.lix Black, Rabins, and German. 1999. See Reference 17.lx Pearlman and Crown. 1992. See Reference 18.lxi Weissert and Cready. 1989. See Reference 19.lxii Black, Rabins, and German. 1999. See Reference 17.lxiii Bauer. 1096. See Reference 51. lxiv Hays, Pieper, and Purser. 2003. See Reference 22.lxv Bauer. 1096. See Reference 51. lxvi Coughlin, McBride, and Liu. 1990. See Reference 21.lxvii Weissert and Cready. 1989. See Reference 19.lxviii Brown RD, Ransom J, Hass S, et al. Use of nursing home after stroke and dependence on stroke severity: a population-based analysis. Stroke. 1999;30:924-929.lxix Weissert and Cready. 1989. See Reference 19.lxx Coughlin, McBride, and Liu. 1990. See Reference 21.lxxi Weissert and Cready. 1989. See Reference 19.lxxii Coughlin, McBride, and Liu. 1990. See Reference 21.lxxiii Dwyer, Barton, and Vogel. 1999. See Reference 11.lxxiv74 Pearlman and Crown. 1992. See Reference 18.lxxv Aykan. 2000. See Reference 20.lxxvi Coughlin, McBride, and Liu. 1990. See Reference 21.lxxvii Rudberg, Sager, and Zhang. 1996. See Reference 16.lxxviii Aykan. 2000. See Reference 20.lxxix Coughlin, McBride, and Liu. 1990. See Reference 21.lxxx Branch and Ku. 1989. See Reference 5.lxxxi Black, Rabins, and German. 1999. See Reference 17.lxxxii Dwyer, Barton, and Vogel. 1999. See Reference 11.

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that we didn’t hear about, because they were so significant that they could not be

overcome. Anecdotal data from the Community Connector Program would indicate this

to be the case, as these lay workers have reported concerns about estate recovery,9

and shared the stories of the day-to-day survival challenges created by the deep

poverty of many in the communities they serve.

9 Estate recovery is the mechanism whereby states can seek reimbursement for the cost of certain long-term care services consumers have received through claims on their estate carried out upon their death.

lxxxiii Black, Rabins, and German. 1999. See Reference 17.lxxxiv Bauer. 1096. See Reference 51. lxxxv Hays, Pieper, and Purser. 2003. See Reference 22.lxxxvi Sherman BR. Predictors of the decision to place developmentally disabled family members in residential care. American Journal of Mental Retardation. 1988; 92(4): 344-51.lxxxvii Tausig M. Factors in family decision-making about placement for developmentally disabled individuals. American Journal of Mental Deficiency. 1985; 89(4): 352-61.lxxxviii Batavia AL, DeJong G, McKnew B. Toward a National Personal Assistance Program: The Independent Living Model of Long Term Care for Persons with Disabilities. Journal of Health Politics, Policy and Law. 1991;16(3): 523-52. In Miller NA, Goldstein E, Harrington, C. Use of Medicaid 1915 (c) Home and Community Care Waivers to Reconfigure State Long Term Care Systems. Medical Care Research and Review. 2001, March; 58(1): 100-119.lxxxix Kaye HS, Longmore PK. Disability Watch: The Status of People with Disability in the United States. San Francisco, CA: Disabilities Rights, Inc. 1998. In Miller NA, Goldstein E, Harrington, C. Use of Medicaid 1915 (c) Home and Community Care Waivers to Reconfigure State Long Term Care Systems. Medical Care Research and Review. 2001, March; 58(1): 100-119.xc Kemper P, Applebaum, R and Harrigan M. Community Care Demonstrations: What Have We Learned? Health Care Financing Review. 1987; 8(4): 87-100. In Krothe JS. Giving Voice to Elderly People: Community Based Long Term Care. Public Health Nursing. 1997, August; 14(4): 217-226.xci Miller NA, Goldstein E, Harrington, C. Use of Medicaid 1915 (c) Home and Community Care Waivers to Reconfigure State Long Term Care Systems. Medical Care Research and Review. 2001, March; 58(1): 100-119.xcii Pezzin PE, Kemper P, and Reschovsky JD. Does Publicly Provided Home Care Substitute for Family Care. Experimental Evidence with Endogenous Living Arrangements. The Journal of Human Resources. 1996; 31(3): 650-676. In Krothe JS. Giving Voice to Elderly People: Community Based Long Term Care. Public Health Nursing. 1997, August; 14(4): 217-226.xciii Kemper, Applebaum and Harrigan. 1987. See Reference 90. xciv American Nurses Association. Position Statement on Long Term Care. Washington DC: American Nurses Association. 1995. In Krothe JS. Giving Voice to Elderly People: Community Based Long Term Care. Public Health Nursing. 1997, August;14(4): 217-226.xcv Harrington, Carrillo, Wellin, Miller, and LeBlanc. 2000. See Reference 3. xcvi Johnson and Wolinsky. 1996. See Reference 6. xcvii Houde. 1998. See Reference 7.

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It should also be noted that none of our primary data collection efforts included input

from direct service workers. Presenting the viewpoint of these workers was not a focus

of this study, or our review of the literature. However, further study along these lines

could provide helpful insight to efforts to address issues related to those providing front-

line care.

xcviii Kersting. 2001. See Reference 8. xcix Bradley, McGraw, and Curry. 2002. See Reference 9. c Houde. 1998. See Reference 7.ci Johnson and Wolinsky. 1996. See Reference 6.cii Bradley, McGraw, and Curry. 2002. See Reference 9. ciii Ibid. civ Ibid. cv Miller B, Campbell RT, Davis L. Minority use of community long-term care services: a comparative analysis. Journal of Gerontology. 1996;51B(2):S70-S81.cvi Rabiner D. Patterns and predictors of noninstitutional health care utilization by older adults in rural and urban America. The Journal of Rural Health. 1995;11(4):259-273.cvii Miller, Campbell, and Davis. 1996. See Reference 105.cviii Rabiner. 1995. See Reference 106.cix Miller, Campbell, and Davis. 1996. See Reference 105.cx Rabiner. 1995. See Reference 106.cxi Bookwala J, Zdaniuk B, Burton L, Lind B, Jackson S, Schulz R. Concurrent and long-term predictors of older adults’ use of community-based long-term care services. Journal of Aging and Health. 2004;16(1):88-115.cxii Miller, Campbell, and Davis. 1996. See Reference 105.cxiii Pan SM, Yang JT, Chen CC. The predictors of long-term care service utilization among older Americans. Kaohsiung Journal of Medical Sciences. 1998;14:226-233.cxiv Bookwala, Zdaniuk, Burton, Lind, Jackson, and Schulz. 2004. See Reference 111.cxv Ibid.cxvi Houde. 1998. See Reference 7.cxvii Ibid.cxviii Ibid.cxix Silverstein NM. Informing the elderly about public services: the relationship between sources of knowledge and service utilization. The Gerontologist. 1984;24(1):37-40.cxx Bradley, McGraw, and Curry. 2002. See Reference 9. cxxi Chapleski EE. Determinants of knowledge of services to the elderly: are strong ties enabling or inhibiting? The Gerontologist. 1989;29(4):539-545.cxxii Harel Z. Nutrition site service users: does racial background make a difference? The Gerontologist. 1985;25(3):286-291.cxxiii Chapleski. 1989. See Reference 121.cxxiv Bradley, McGraw, and Curry. 2002. See Reference 9. cxxv Silverstein. 1984. See Reference 119.cxxvi Ibid.

102

In this study, qualitative methods were deemed the most appropriate way to better

understand the decision-making process surrounding utilization of formal long-term care

services in Arkansas. Through the process of collecting and analyzing these data, we

have identified a number of issues that could be quantified through administration of a

closed-ended survey instrument implemented on a broader scale. Some of the areas of

inquiry we believe could be explored through a standardized tool include:

cxxvii Ibid.cxxviii Bradley, McGraw, and Curry. 2002. See Reference 9. cxxix Andersen RM. Revisiting the behavioral model and access to medical care: Does it matter? Journal of Health and Social Behavior. 1995; 36(1): 1-10. cxxxii Miller WL, Crabtree BF. Overview of qualitative research methods, Chapter 1. In Crabtree BF, Miller WL, eds. Doing Qualitative Research: Research Methods for Primary Care, Volume 3. Thousand Oaks, CA: Sage Publications, Inc. 1992: 3-30.cxxxiii Crabtree BF, Miller WL. Interpretation: Strategies of analysis, Chapter 5. In Crabtree BF, Miller WL, eds. Doing Qualitative Research: Research Methods for Primary Care, Volume 3. Thousand Oaks, CA: Sage Publications, Inc. 1992: 93-109.cxxxiv Gilchrist VJ. Key informant interviews, Chapter 4. In Crabtree BF, Miller WL, eds. Doing Qualitative Research: Research Methods for Primary Care, Volume 3. Thousand Oaks, CA: Sage Publications, Inc. 1992: pp 70-92.cxxxv Miller and Crabtree. 1992. See Reference 132.cxxxvi Huberman AM, Miles, M. Data management and analysis methods, Chapter 27. , In Denzin NK, Lincoln YS, eds. Handbook of Qualitative Research. Thousand Oaks, CA: Sage Publications. 1994: 428-444. p. 429.cxxxvii Ibid.cxxxviii Ibid, p. 439. . cxxxix AAANWA, Area Agency on Aging of Northwest Arkansas and DAAS, Division of Adult and Aging Services. (2003). Public Benefits for Arkansas Seniors, 2003. Little Rock, AR: Division of Adult and Aging Services. Accessed at http://www.state.ar.us/dhs/aging/pubbenarsr03.pdf and verified on February 17, 2004.cxl GIST, Governor’s Integrated Services Task Force and the Arkansas Department of Human Services. The Olmstead Plan in Arkansas: A Catalyst for Collaboration and Change. 2003. Accessed at http://www.state.ar.us/dhs/aging/olmarplan0303pro.doc and verified on 2/21/05.cxli Alternatives for Adults with Physical Disabilities Webpage accessed at http://www.state.ar.us/dhs/aging/alt.html and verified on February 17, 2005.cxlii GIST and ADHS. 2003. See Reference 140.cxliii Division of Developmental Disabilities Services Webpage accessed at http://www.state.ar.us/dhs/ddds/ddsinsti.html and verified on February 17, 2005.cxliv Nursing Home 2009 County Need from the Arkansas Health Services Permit Agency accessed at http://www.arhspa.org/bed_need/jan-05/NH-2009-County-Need-New.pdf and verified on February 17, 2005.

103

Whether information on HCBS was sought and if so, by whom, where, when, how and what was learned;

Difficulties experienced with knowing for what services individuals were eligible, finding information on how to apply, and filling out paperwork;

What assistance individuals received from traditional informational sources (and new sources being promoted such as the www.argetcare.org website), and how helpful they were; and

cxlv AAANWA, 2003. See Reference 139. cxlvi Harrington C, Swan JH, Nyman JA, and Carrillo H. The effect of the certificate of need and moratoria policy on change in nursing home beds in the United States. Medical Care. 1997; 35 (6): 574-588.cxlvii AHSPA, Arkansas Health Services Permit Agency. POA Rulebook. Little Rock, AR: Arkansas Health Services Permit Agency. 2004. Accessed at http://www.arhspa.org/rules_regs/poa_revised_rulebook_october_2004.pdf. cxlviii ADDDS, Arkansas Division of Developmental Services. General Information on Human Development Centers. No date. Webpage accessed at http://www.state.ar.us/dhs/ddds/ddsinsti.html#general. cxlix Personal Communications, DHS Staff.cl AHSPA, Arkansas Health Services Permit Agency. Nursing Home County Need FY 2005. 2005. Accessed at http://www.arhspa.org/bed_need/jan-05/NH-2009-County-Need-New.pdf. cli AHSPA, Arkansas Health Services Permit Agency. Nursing Home County Need FY 2002. 2002.clii Ibid. cliii Gist and ADHS, 2003. See Reference 140, page A-21.cliv ADHS, Arkansas Department of Human Services. Annual Statistical Report. Little Rock, AR: Arkansas Department of Human Services. 1998.clv ADHS, Arkansas Department of Human Services. Annual Statistical Report. Little Rock, AR: Arkansas Department of Human Services. 1999. Accessed at http://www.state.ar.us/dhs/dhs1999stats/stats_toc.htm. clvi ADHS, Arkansas Department of Human Services. Annual Statistical Report. Little Rock, AR: Arkansas Department of Human Services. 2000. Accessed at http://www.state.ar.us/dhs/dhs2000stats/stats_toc.htm.clvii ADHS, Arkansas Department of Human Services. Annual Statistical Report. Little Rock, AR: Arkansas Department of Human Services. 2001. Accessed at http://www.state.ar.us/dhs/AnnualStatRpts/dhs2002stats/DMS/DMSpg31.htm. clviii GIST and ADHS. 2003. See Reference 140.clix Ibid.clx Ibid.clxi Tonner MC, Harrington C.  Nursing Facility and Home and Community-Based Service Need Criteria in the United States.  Home Health Care Services Quarterly. 2003; 22(4):65-83. clxii Ibid, p. 79. clxiii Tonner and Harrington. 2003. p. 75. See Reference 161.clxiv Department of Health and Human Services (2005). Budget in Brief, Rich Text Format, Fiscal Year 2006 p. 82. Accessed on 2/16/05 at http://www.hhs.gov/budget/06budget/BIBRichTextVersion.rtf.

104

What other informational sources individuals used to access the system.

clxv Personal communication, DHS Staff.clxvi Kassner E. Medicaid Financial Eligibility for Older People: State Variations in Access to Home and Community-Based Waiver and Nursing Home Services. Washington, DC: AARP. 2000. Accessed on 2/16/05 at http://research.aarp.org/health/2000_06_medicaid.pdfclxvii Personal communication, DHS Staff.clxviii Stewart MK, Felix HC. Sustaining Community Health Workers Policy Intervention Project: Final Report to the Enterprise Corporation of the Delta. Little Rock, AR: College of Public Health, UAMS. 2004.clxix Wisconsin Real Choice Systems Grant Information accessed http://www.cms.hhs.gov/systemschange/winft.pdt and verified on August 5, 2004. clxx New Hampshire Real Choice Systems Change Grant Information accessed at http://www.cms.hhs.gov/systemschange/nhrc.pdf and verified on August 5, 2004.clxxi Maryland Real Choice System Grant Information accessed at For Maryland: http://www.cms.hhs.gov/systemschange/md.nft.pdf and verified on August 5, 2005.clxxii Shaner H. Dual eligible outreach and enrollment: a view from the states. Outreach Tools and Other Resources. Washington, DC: Centers for Medicare and Medicaid Research. Available at http:www.cms.hhs.gov/dualeligibles/outreach.asp. clxxiii Angel JI. Helping Families to Navigate the System of Long-Term Care Alternatives: The Role of Information Technology. Journal of Family and Consumer Sciences. 1999;91(3), p. 117. clxxiv Tanner, R. “Assisted Living”, Health Policy Tracking Services, April, 2004.clxxv Adams K, Novak R, Jenkins R, DeShane M, Brecht S. Arkansas Assisted Living Demand Analysis. (Prepared for Arkansas Department of Aging and Adult Services). February 2005.clxxvi Person-Centered Care. No date. Accessed on February 21, 2005 at http://www.bethanygrp.org/rosehaven/personcenteredcare.htm.clxxvii Nissenboim S. Professional Caregiving: ‘Person-Centered Care’ is In, One-Size-Fits-All is Out, July 14, 2004. Accessed at:http://www.caregivershome.com/professional/professional.cfm?UID=18, on 2/21/05.clxxviii GIST and ADHS. 2003. p. 14. See Reference 140. clxxix Ibid. p. 30-31. clxxx Personal communication, DHS Staff, 02/05.clxxxi ADHS, Arkansas Department of Human Services. Report of the Arkansas Olmstead Working Group for the Development of a Comprehensive, Effective Working Plan to Comply with the United States Supreme Court’s Holding on Olmstead v. LC. 2001. Accessed at www.accessarkansas.org/dhs/aging/OlmsteadReportVer6.doc and verified on February 22, 2005.clxxxii Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Affairs. 1999; 18(2): 182-188.

105

Another direction for research that builds upon this study could be analyses of Medicaid,

and perhaps Medicare, claims data to study patterns and paths for care that might

reveal strategic points for intervention. For example, several of the institutionalized

consumers we interviewed came into nursing homes directly from the hospital or from

the facility where they were receiving rehabilitation. However, our data were not

sufficient to determine whether this is a pattern more common among nursing home

residents than users of HCBS, though this appears to perhaps be the case.

Also worthy of further exploration are the findings suggestive of racial disparities

identified in our analysis of Medicaid eligibility files. More work is needed to determine if

racial disparities persist when the denominator for rates of use by race are more

accurately measured to represent the population of interest. Further analyses of the

key informant interviews are also needed to determine if racial differences in access

emerge.

Finally, we would like to note that although this report focuses on identifying ways to

improve long-term care services for the elderly and adults with physical and

developmental disabilities, many people who participated in our study expressed how

much they appreciated the services they were receiving. Along these lines we would

like to close with the following quotes from KII respondents.

“I am so thankful that somewhere along the line there was some program like this that came up that gives me the benefit to be able to stay in my house. Be on my own, my own independence. I really am thankful, and it hasn’t been around that long either so… And I’m thankful for every bit of it.” (Quote from a KII with an Alternatives Waiver consumer)

“… We went from no hope, lost hope to, you know, actually going, ‘Hey, we finally made it.’ It’s like being stranded at sea and finally seeing a rescue boat. So, that’s where I am today.” (Quote from a KII with an Alternatives Waiver consumer.)

clxxxiii Feder J, Komisar HL, Niefeld M. 2000. Long-Term Care In The United States: An Overview. Health Affairs. 19(30): 40-56.clxxxiv Kassner and Shirley. 2000. See Reference 167.

106

107

Appendix APredictors of Nursing Home Placement from a Review of the

Literature

a

b

VariablesRudberg

et al. SteinbachWeissert & Cready

X=variable in study. Bolded X=variable significant predictorSocio-demographic Characteristics    Age x x xGender x xMarital Status xRace (black) x xEthnicity (Hispanic)EducationType of health insuranceIncome

Poverty status/Medicaid eligibility xRural/UrbanHome ownershipLength of residence/stabilityHealth Characteristics      IADL status x x xADL status x x xMental status/dementia x xMobility xSelf -Reported health x# of Illnesses/Chronic conditions

Impaired social activity xFalls/Fractures xMental health/Not dementia xDepressionProblem behaviorCancer x xHeart/Circulatory problems x xStroke or neurological problems xArthritis/musculoskeletal xDiabetes xRespiratory problems x xHearing/vision problemsIncontinenceHealth Service Use      Prior NH useRecent hospitalization xNH availability (# beds) xMental health visitsPaid help (home care/HCBS)Satisfaction with supportive careSocial Support      Living arrangement x xNumber of childrenFamily network/social supportChild proximityCaregiver distress/illnessInformal support (unpaid helpers)

c

Full Citations for Literature Review Matrix

Aykan H. Do state Medicaid policies affect the risk of nursing home entry among the elderly? Evidence from the AHEAD Study. Research on Aging. 2000; 24(5): 487-512.

Bauer EJ. Transition from home to nursing home in a capitated long-term care program: The role of individual support systems. HSR: Health Services Research. 1996; 31(3): 309-326.

Black BS, Rabins PV, German PS. Predictors of nursing home placement among elderly public housing residents. The Gerontologist. 1999; 39(5): 559-568.

Coughlin TA, McBride TD, Liu K. Determinants of transitory and permanent nursing home admissions. Medical Care. 1990; 28(7): 616-631.

Dwyer JW, Barton AJ, Vogel WB. Area of residence and the risk of institutionalization. Journal of Gerontology: Social Sciences. 1994; 49(20): S75-S54.

Freeman VA, Berkman LF, Rapp SR, Ostfeld AM. Family networks: Predictors of nursing home entry. American Journal of Public Health. 1994; 84(5): 843-845.

Greene VL. Ondrich JI. Risk factors for nursing home admission and exists: A discrete-time hazard function approach. Journal of Gerontology: Social Sciences. 1990; 45(6): S250-S258.

Hays JC, Pieper CF, Purser JL. Competing risk of household expansion or institutionalization in late life. Journal of Gerontology: Social Sciences. 2003; 58B(1): S11-S20.

Kersting RC. Predictors of nursing home admission for older black Americans. Journal of Gerontological Social Work. 2001;35(3):33-51.

Pearlman DN, Crown WH. Alternative sources of social support and their impacts on institutional risk. The Gerontologist. 1992; 32(4): 527-535.

Rudberg MA.. Sager MA, Zhang J. Risk factors for nursing home use after hospitalization for medical illness. Journal of Gerontology: Medical Sciences. 1996; 51A(5): M189-M194.

Steinbach U. Social networks, institutionalization, and mortality among elderly people in the United States. Journal of Gerontology: Social Sciences. 1992; 47(4): S183-S190.

Weissert WG, Cready CM. Toward a model for improved targeting of aged at risk of institutionalization. HSR: Health Services Research. 1989; 24(4): 485-510.

d

Appendix BMembers of the Advisory Working Group

Sandra Barrett - retiredDivision of Aging and Adult ServicesArkansas Department of Human ServicesP. O. Box 1437, Slot S530Little Rock, AR 72203

Jennifer Dillaha, MDPublic Health PhysicianArkansas Department of Health 4815 West Markham, Slot 41Little Rock, AR 72205

Elaine EubankDirectorCareLinkP. O. Box 5988North Little Rock, AR 72219

Dawn Graziani, RNPersonal Care/Elder Choices/Community-BasedCase Management/Maternal and Infant ProgramArkansas Department of Health5800 West 10th Street, Suite 300Little Rock, AR 72204

James C. Green, PhDDirector, Developmental Disabilities Services (DDS)Arkansas Department of Human ServicesPO Box 1437, Slot N501Donaghey Plaza North, 5th FloorLittle Rock, AR 72203

James HaydenAssistant Director, Developmental Disabilities Services (DDS)Arkansas Department of Human ServicesPO Box 1437, Slot N501Donaghey Plaza North, 5th FloorLittle Rock, AR 72203

Randy HelmsDivision of Medical ServicesArkansas Department of Human ServicesP. O. Box 1437, Slot S416Little Rock, AR 72203

Scott HolladayNational Academy for State Health Policyc/o Arkansas Division of Aging and Adult ServicesP. O. Box 1437, Slot S-530Little Rock, AR 72203-1437

Rich HuddlestonResearch DirectorArkansas Advocates for Children and Families523 S. Louisiana, Suite 700Little Rock, AR 72201

Shelley Lee, MPADivision of Developmental Disabilities Services Arkansas Department of Human Services150 E. Seibenmorgen Dr.Conway, AR 72032

Donna MaddenDevelopmental Disabilities Services (DDS)Arkansas Department of Human ServicesPO Box 1437, Slot N501Donaghey Plaza North, 5th FloorLittle Rock, AR 72203

Sherri Proffer, RNArkansas Department of Human ServicesDonaghey Plaza South, Suite 1100Little Rock, AR 72203

Carol ShockleyDirector, Office of Long Term CareArkansas Department of Human ServicesP. O. Box 8059, Slot S409Little Rock, AR 72203

Herb Sanderson, MPADirector, Division of Aging and Adult ServicesArkansas Department of Human ServicesP. O. Box 1437-S530Little Rock, AR 72203-1437

Linda WhiteDirector, ACS Waiver Services United Cerebral Palsy of Arkansas9720 North Rodney Parham Rd.Little Rock, AR 72227

a

Appendix CFocus Group Discussions Coding Scheme

1. Social Support 1.1 Resources1.2 Demographics1.3 Health Status1.4 Knowledge1.5 Attitudes, experience, perceptions, emotion, etc.

2. Provider 2.1 Resources2.2 Policy2.3 Knowledge2.4 Attitude, experiences, preferences, emotions2.5 Practice2.5 Marketing2.6 Structured Environment

3. Community3.1 Infrastructure3.2 Community Climate

4. System4.1 Policy4.2 Quality4.3 Infrastructure4.4 Information4.5 Public Demand

5. Individual5.1 Social Support5.2 Resources5.3 Demographics5.4 Health Status5.5 Knowledge5.6 Attitudes, experience, perceptions, emotion, etc.

b

References

cxxx Pruchno RA, McMullen WF. Patterns of service utilization by adults with developmental disabilities: Types of Service Makes a Difference. American Journal of Mental Retardation. 2004; 109(5): 362-378.cxxxi Bradley, McGraw, and Curry. 2002. See Reference 9.