Effectiveness of Children's Home and Community-Based Waiver Program

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O R I G I N A L P A P E R

Effectiveness of a Childrens Home and Community-based

Services Waiver Program

Ramon Solhkhah, M.D. Cathryn L. Passman, C.S.W. Glenn Lavezzi, B.A. Rachel J. Zoffness, M.A. Raul R. Silva, M.D.

Published online: 12 June 2007 Springer Science+Business Media, LLC 2007

Abstract

Objective Limited alternatives exist to residential treatment or hospitalization for children

with the most serious emotional disturbances. Community-based interventions are intended

to offer less restrictive and expensive options than traditional treatment. One such program is

New York States Home and Community-Based Services (HCBS) Waiver Program.

Methods From 1996 to 2002, 169 children were enrolled in the Manhattan HCBS. All spent

at least one month on the wait list prior to admission to the waiver program. We used ourwait list as a control group (WLC), allowing for comparison of the HCBS intervention.

Results Sample consisted of 169 children between the ages of five and eighteen. The ethnic

composition was 46.8% Hispanic (N = 79), 47.9% African-American (N = 81), and 5.3%

Caucasian (N= 9). Average stay was 12 months in the HCBS program and 3.5 months for

the WLC. Only 30% of children in the WLC were maintained in the community, while 81%

of children in the HCBS were similarly maintained (P < 0.001). Also, the rate of hospital-

ization for the HCBS group was significantly lower (3 versus 41%; P < 0.001). There was

also a trend for the WLC group to have had substantially higher rates of removal by the

Administration for Childrens Services (New York Citys protective service agency) (8.3

versus 1.8%) and to more frequently require residential treatment (13.0 versus 8.9%).Conclusions It would seem that the HCBS program appears to be a clinically and cost-

effective method of maintaining children in their community.

Keywords Home-Base Community Service HBCS Psychopathology

Child services

Presented in part at the 50th annual meeting of the American Academy of Child and Adolescent Psychiatry,Miami, FL Oct. 14-19, 2003.

R. Solhkhah, M.D. (&) C. L. Passman, C.S.W. G. Lavezzi, B.A. R. J. Zoffness, M.A. R. R. Silva, M.D.The Child and Family Institute at St. Lukes and Roosevelt Hospitals, 411 West 114th Street, Suite 5C,New York, NY 10025, USAe-mail: [email protected]

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Introduction

Epidemiological research suggests that as many as 7.5 million children in the United States

have a diagnosable mental disorder, yet many go undiagnosed and therefore receive little

or no treatment for their problems [1]. Others receive inappropriate services or are placedin restrictive settings, such as inpatient psychiatric hospitalization or residential treatment

facilities [2]. Recent literature has documented poor outcomes for students with serious

emotional disturbance (SED), showing that more than 5% of children and adolescents with

serious emotional disturbance are suspended or expelled from school annually [3]. How-

ever, research over the past decade has indicated a variety of effective evidence-based

interventions for children in the community, such that children who were once treated in

institutions can now remain at home [4, 5]. These evidence-based interventions call for

innovative service delivery, which provides home-, and community-based services, family

support, case management, respite care, crisis response, and individualized treatment plan

for both child and family [4].In communities throughout the United States, there is a growing desire to coordinate

activities of the many individuals and agencies serving SED children and their families. By

way of definition, SED youth may be diagnosed with one or more Axis I psychiatric

disorders, including anxiety disorders, Attention-Deficit/Hyperactivity Disorder (ADHD),

bipolar disorder, major depressive disorder, psychotic disorders, substance use disorders,

and/or suicidal behavior [6]. Moreover, many subjects with serious psychiatric illness are

unable to function either at home and/or at school without long-term help and have dif-

ficulties in the realms of educational, vocational, health, child welfare, or juvenile justice

[7]. The Medicaid Home and Community-Based Services (HCBS) Waiver Program is arelatively new option for this population, although it was established in 1981 and autho-

rizes states to provide home- and community-based alternatives to institutional care [8].

The HCBS waiver program is able to offer a wide range of medical and non-medical

services related to personal assistance, including case management, respite care, and home-

based services.

The prioritization of at-risk youth and their families is a relatively recent goal. Some

states have developed individualized systems of care specifically for SED children and

families, including Alaska, Vermont, Idaho, and Washington [9, 10]. Improving services

for these children and their families requires knowledge of the target population, the

community in which they live, available resources, procedures for initiating cooperativecommunity efforts, effective communication, and definitive goals [11]. Stroul and Fried-

man [10] outline a system of care for SED children and youth that proposes a community-

based, collaborative service delivery system that provides an individualized plan

addressing mental health, environmental, familial, and social service needs. However, in

many regions of the country there are limited alternatives to long-term residential treat-

ment or hospitalization for children and adolescents with serious emotional disturbances.

Theoretically, community-based interventions are intended to offer less restrictive and

less expensive options than traditional treatment [5, 12]. One such program is New York

States Home and Community-Based Services (HCBS) Waiver Program. This programprovides a menu of six different wraparound services that are offered in addition to

traditional outpatient treatment. These services include: 1) Individualized Care Coordi-

nation, 2) Respite Care, 3) Family Support Services, 4) Skills Building, 5) Intensive In-

Home services, and 6) 24-hour Crisis Response.

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New York Countys (Manhattans) HCBS program currently has the capacity to serve

48 children, although at inception the programs maximum census was 24 children. When

the program is at full capacity, prospective applicants are then placed on a wait list. All

applicants must meet the criteria delineated below, and be approved by a local govern-

mental unit prior to being assigned to the HCBS program or being placed on a wait list. Await list of no more than 24 patients is permitted at any given time. While children are on

the wait list they continue to receive traditional forms of outpatient treatment, such as

outpatient psychotherapy, medication management, or day hospital treatment.

In order to be eligible for the St. Lukes-Roosevelt HCBS waiver program, children

must meet the following criteria: they should be between 5 and 18 years old, and meet

criteria for a DSM-IV Axis 1 psychiatric diagnosis, as well as New York State criteria for

serious emotional disturbance. SED is defined in the state of New York as having func-

tional limitations due to emotional disturbance over the past 12 months, with a score of 50

or less on the Childrens Global Assessment Scale. If not admitted to the HCBS program,

they would otherwise require a level of care of inpatient psychiatric hospitalization orresidential treatment, be at imminent risk of admission to inpatient psychiatric hospital-

ization or residential treatment, or have need for continued hospitalization. Perhaps most

importantly, the child has to have a viable living environment in the community, with

parents or guardians who are willing to participate in the HCBS program. Finally, the child

would be eligible for Medicaid under the HCBS waiver, and it is fiscally reasonable for the

child to be cared for in the community. To be eligible for Medicaid, the child must meet all

of the criteria for HCBS and is then considered a family of one. New York State

budgets an average of $47,500 per child enrolled in the waiver program per year.

Once in the HCBS program, each child is assigned an Individualized Care Coordinator(ICC) who meets with the child and family in their home environment, taking into account

the community in which the child lives. It is important to note that this study focuses on

children from New York City, an important factor in their treatment given that research

shows that urban environments can affect a childs development and increase their risk for

adverse mental health problems [14]. The ICCs conduct assessments to determine the

requirements of each individual, and subsequently implement services such as respite care,

family support services, skills building, and intensive in-home as needed. Incorporation of

the family in treating children and adolescents is widely evidenced to be effective; this is

therefore an essential part of the HCBS program [15].

While these types of programs have been described for many years [16, 17], there is adearth of information regarding the systematic evaluation of effectiveness and outcomes of

community-based interventions. To this end, we analyzed the effectiveness of our program

over a six-year period, utilizing a within-group design with a primary outcome measure of

maintenance in the community.

Methods

Patients

During the period of 19962002 (since the inception of this HCBS program) 169 children

and adolescents were enrolled in the HCBS. All of these children spent at least one month

on the wait list prior to admission to the waiver program. In addition, all of the subjects

come from the same referral sources (including physicians, schools, hospitals, outpatient

clinics, and residential treatment facilities), differing only in time of referral. We were

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therefore able to conduct a retrospective chart review using our wait list as a control group

(WLC), allowing for comparison of the same children before and after the HCBS inter-

vention.

We compared the statistics for each subject pre- and post-intervention (HCBS versus

WLC), which included hospitalization and residential treatment placement rates, and thetotal number of patients maintained in the community. The primary outcome measures

were then submitted to statistical analysis using SPSS (Statistical Package for the Social

Sciences, version 11.5) by means of a Wilcoxon analysis to determine the impact of the

HCBS program on maintaining children in the community.

Program description:

At St. Lukes-Roosevelt Hospital Center, eight individualized care coordinators provided

services in this program and received training from the New York State Office of MentalHealth (OMH) on the HCBS model. The ICCs in this study either have Bachelors or

Masters Degrees in social work or related fields and a minimum of two years experience

working with SED children. Each ICC is responsible his/her own caseload, meeting with

each child and family six times per month (an average of 1.5 visits per week). It is

important to note that one of the key features of the HCBS program is the strength-based

assessment conducted prior to initiation of services. During their visits, ICCs provide

intensive in-home and family support services. They are also responsible for coordinating

care with local community agencies, offering families a choice of providers for both skills

building and respite care. All ICCs are supervised on a weekly basis by the senior socialworkers and/or the director of the HCBS program. The individuals providing services such

as parenting skills, coping skills, and anger management are trained outside of the HCBS

program. Twenty four-hour crisis response is provided by on-call child and adolescent

psychiatrists through the Division of Child and Adolescent Psychiatry at St. Lukes-

Roosevelt Hospital Center.

Results

A total of 169 subjects were analyzed. Of these, 115 were boys, and 54 were girls. Theyranged in age from 518 years old, with an average age at entry of 11.98 years (SD = 3.32).

The ethnic composition was 46.8% Hispanic (N= 79), 47.9% African-American (N= 81),

and 5.3% Caucasian (N= 9). The average stay in the HCBS program was 12 months. The

average length of time in the WLC was 3.5 months.

The results showed that 30% of the subjects while on the wait list were maintained in

the community, while 81% of the subjects when enrolled in the HCBS were similarly

maintained. This difference (30 versus 81%) was statistically significant (P < 0.001). The

HCBS program successfully maintained 81% of its children in the community during an

average period of twelve months, while the children on the wait list were maintained atonly a 30% rate for a substantially shorter (three and one-half months) period. This

translates to a corrected treatment failure rate of approximately three patients/month for the

HCBS compared to 33 patients/month for the WLC. The overall clinical outcome of the

sample is presented in Table 1.The services offered during HCBS were significantly more

effective at keeping children in the community than were the services while on the wait

list. In terms of costs, Table 2 presents comparative prices for the HCBS program and

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alternative services available in New York State, demonstrating that a home- and com-

munity-based waiver program is an economically viable alternative to other options for

treating SED youth.

In comparing, the rate of inpatient psychiatric hospitalization when using HCBS, this

was also significantly lower at 3 versus 41% (P < 0.001) while on the wait list. Although,

while on the wait list the group also had substantially higher numerical rates (8.3 versus

1.8%) of removal by the Administration for Childrens Services (ACS; New York Citys

protective service agency) this difference was not statistically significant. There was atrend for WLC patients to more frequently require residential treatment (13.0 versus 8.9%,

P = 0.08).

Discussion

Based on these preliminary findings, it would seem that the HCBS program appears to be a

clinically and cost-effective method of maintaining children in their community. The

HCBS program successfully maintained 81% of its children in the community during an

average period of twelve months, while the children on the wait list were maintained at

only a 30% rate for a substantially shorter (three and one-half months) period. This

translates to a corrected treatment failure rate of three patients/month for the HCBS

compared to 33 patients/month for the wait list control group. It should be noted that the

hospitalization rate of the children in the HCBS program during the first 3 months of its

operation accounted for three of the five patients listed in Table 1. This was due, in part, to

Table 1 Clinical outcome for the group while receiving home and community based services (HBCS)versus while on the Wait List (WL)

HCBS (N= 169) WL (N= 169)

Patients sent to or requiring:Inpatient hospitalization 3.0% (N= 5) 41.4% (N= 70)

Residential treatment 9.5% (N= 16) 13.0% (N= 22)

Removed by ACS 1.8% (N= 3) 8.3% (N= 14)

ICM/SCM 0.0% (N= 0) 7.7% (N= 13)

Boarding school 3% (N= 5) 0% (N= 0)

Left program for other reasons 1.8% (N= 3) 0% (N= 0)

Maintained in the community 81% (N= 137) 29.6% (N= 50)

ACS-Administration for Childrens Services (New York Citys child welfare agency)

ICM-Intensive Case ManagerSCM-Supportive Case Manager

Table 2 Comparative average daily costs in alternative levels of care in New York state

Service Average daily costs

Acute inpatient hospitalization $8001000

Residential treatment $200300

Day hospital $150180

HCBS $130150HCBS-Home and Community Based Services

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the fact the full spectrum of services was not initially available and the severity of illness of

the children warranted a higher level of care. If one examines the hospitalization rate

during the ensuing years of the programs operation it translates to two hospitalizations for

169 children or just slightly over 1% of very high risk enrolled SED children over a 6-year

period.There have also been certain clinical issues that have become evident in administering

this program. Most notably, this program best serves those patients whose parents are

invested in maintaining the child at home. Parents who are ambivalent about keeping their

children at home represent a disproportionately large percentage of the treatment failures.

This phenomenon accounts for two cases removed by the Citys protective services

agency, as well as one of the cases placed in residential treatment for the HCBS group.

Research on children with SED treated within the community has shown this to be an

effective context for care [4]. Common goals among community providers appear bene-

ficial for enhancing the coordination of general and mental health care [18]. Specific

studies of SED children indicate that coordinated, community-based youth and familyservice projects may be more effective than overly restrictive settings, such as inpatient

hospitalization or residential treatment [14, 19, 20]. In fact, the results of these studies

contributed to the enactment of the Virginia Community Services Act for At Risk Youth

and Families, which mandates a collaborated system of services that is child centered,

family focused, and community-based. A recent study by Farmer, Clark and Marien [21]

similarly suggests a Medicaid managed, family-centered, and community-based system of

care for children with mental illness. Our study, conducted in a real-world environment to

optimize ecological validity, supports an interagency collaborative model as part of a

comprehensive system of care for children. We conclude that treating children with seriousemotional disturbance at home is indeed a viable way of maintaining them in the com-

munity.

Interestingly, although evidence-based research shows that home-based services have a

strong record of effectiveness, they are not yet being transferred from research to com-

munity settings [2224]. Indeed, families of children with special health care needs de-

scribe the system of care as fragmented, inconsistent, and unresponsive [21]. Although the

Medicaid waiver program has grown nationwide since its inception, the program still

remains small in relation to those offering institutional placement [8]. We speculate that

this is due in part to the high initial cost of placing a child in a waiver program versus the

deferred annual cost of residential treatment or inpatient hospitalization.Other barriers may include relative lack of access to the array of services that families

need, inadequate coordination of services, inappropriate treatment, lack of parental

information about how to get their childs needs met, geographic and economic hardships,

and health care financing mechanisms that do not support comprehensive and integrated

health care service delivery. Identifying other barriers to implementation of effective

treatment continues to be a challenge and must be addressed. The present study suggests a

need for further research on the role of urbanization in the development of childhood

mental illness, and the effectiveness of HCBS programs for other inner city populations.

Unfortunately, despite research suggesting both need and effectiveness, there continuesto be a dearth of comprehensive, coordinated, community-based systems of care for SED

children and their families in the United States [10]. In contrast, this model has been

embraced by systems of care working with developmentally disabled individuals. For

example, in New York State, while there are only 610 HCBS waiver slots for SED

children, there are over 51,000 slots for the developmentally disabled. The initiative to help

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communities build interagency teams with goals specific to the individual needs of each

child and his/her family remains an important goal for childrens mental health services.

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Effectiveness of Children's Home and Community-Based Waiver Program