Creating inclusive disability communities

e11Abstracts / Disability and Health Journal 2 (2009) e1ee15

Christopher Reeve. The media plays a powerful role in providing society

with information to become educated upon, develop opinions about and

demand action for. Media analysis illustrates the type of information

being provided to society.

Methods/Design: Quantitative trend analysis (1998-2007) was completed

for US news print media (549 sources) followed by thematic content

analysis of major publications (NYTimes, Washington Post, Associated

Press, USA Today). Relevant news items were identified through

LexisNexis using key words (spinal cord injury/disease, research,

rehabilitation and cure). Annual trends were further examined with

monthly breakdown analysis juxtaposed with world headline events

potentially affecting reporting frequency.

Results: Analysis revealed a steady annual increase in SCI research related

articles with a larger number focused on cure versus rehabilitation. Topical

focus included stem-cell research, future of research grants, robotics use,

cloning and the work of Christopher Reeve. Two reporting spikes (2001,

2004) and a lull (2003) were identified. Further analysis suggests

association of these trends with headline events, particularly the Iraq/

Afghanistan wars and the stem-cell research debate.

Conclusions: Media content review is useful in documenting trends to help

ascertain information being disseminated. Understanding public

representations and perceptions is essential for contextualizing funding

and research priorities. This analysis demonstrates the translation and

possible shaping of a research niche by global and domestic events.

Creating inclusive disability communities

Katharine Hayward, PhD, MPH, Tarjan Center, UCLA, Berkeley, CA

Previous studies indicate a hierarchy of acceptance for people with

varying types of disability, where people with mental retardation or

a psychiatric disability are less accepted than people with physical

disabilities. However, research among people with disabilities assessing

how they view others with disabilities is nearly nonexistent. This study

explores whether a hierarchy of acceptance of people with disabilities

exists among those with disabilities and seeks to describe factors

contributing to it. College students with disabilities (n 5 102) completed

questionnaires that included items on social distance, disability identity,

and contact with others with disabilities. Findings from this study

demonstrated a stable hierarchy of disability among people with

disabilities consistent with earlier research. Social distance did not vary

by respondent’s disability. Contact with others with disabilities was

found to be significantly related to social distance. Findings also

indicated that being White, having a close friend with a disability, and

a father who was college educated increased social acceptance of others

with disabilities. This study has several implications for the importance

of anti-stigma campaigns in increasing social participation of people

with disabilities.

Just what the doctor ordered: Medical-legal partnerships to achieve

improved health for low-income children with disabilities

Yael Bina Zakai, Attorney (Esq) , Health Access Project, The Children’s

Law Center, Washington, DC

Health providers can address the medical needs of poor families, but

legal barriers often stand in the way of sustained improved health

outcomes for needy children with disabilities. Medical-legal partnerships

address the non-medical needs of low-income children by adding

a lawyer to the treatment team. For example, despite appropriate pediatric

care, a child with juvenile rheumatoid arthritis and learning disabilities

struggled with daily joint pain, lack of academic progress, and impaired

social-emotional functioning due to his school’s failure to provide him

with needed special education services. In collaboration with the

pediatrician, an attorney effectively advocated for this child to receive the

necessary school services. Consequently, he no longer suffers from daily

joint pain and his health has improved.

While medical-legal collaboratives began as hospital-based operations,

the Health Access Project (HAP) at Children’s National Medical Center

locates attorneys onsite at community pediatric clinics throughout

Washington D.C. in neighborhoods where underserved families reside,

increasing access to legal services for needy families with children with

disabilities. Because HAP lawyers work from offices inside the clinic,

medical staff can consult directly with them when legal intervention is

needed. HAP attorneys have improved health outcomes for many children

through advocacy in special education, access to health care, public

benefits, family law and housing matters. HAP attorneys also provide

trainings for clinic staff to educate them about legal issues facing their

patients, and provide legal rights trainings directly to parents and

caregivers of children with disabilities to empower them to advocate on

their own behalf.

Reliability of the PEONIES approach to consumer-centered to long-

term care quality assurance/quality improvement

Sarita L. Karon, PhD, Center for Health Systems Research and Analysis,

University of Wisconsin - Madison, Madison, WI

Barbara Bowers, PhD, School of Nursing, University of Wisconsin-

Madison, Madison, WI

Kay Hutchison, MS, Center for Health Systems Research and Analysis,


Donna Kopp, RN, MS, Center for Health Systems Research and Analysis,


Kim Nolet, BS, School of Nursing, University of Wisconsin-Madison,

Madison, WI

Brenda Ryther, RN, MS, Center for Health Systems Research and Analysis,


The PEONIES approach is a unique method of assessing and measuring

the quality of community-based long-term services and supports, based on

consumer-specific outcomes in 12 areas. It uses semi-structured interviews

to identify specific outcomes of importance to consumers; determine the

current status of these outcomes; identify supports and services necessary

to support achievement of the desired outcomes; and assess the adequacy

and acceptability of the necessary supports/services to the consumer. This

detailed, consumer-specific information is used in care planning and to

report quality indicators at the systems level.

Inter-rater reliability of this approach was tested during late 2007 and

early 2008. Project development staff observed interviews of long-term

care consumers (‘‘frail elders,’’ adults with physical disabilities, and adults

with developmental disabilities) conducted by skilled quality reviewers

and care managers trained in the PEONIES approach. Training was

conducted in a six-hour session, after which each interviewer conducted 1

or 2 interviews. A second, 8-hour training was then conducted to reinforce

training in areas where there appeared to be confusion.

Interviewers and observers recorded information independently. Inter-

rater reliability was assessed overall as percent agreement. Intraclass

correlations were calculated to assess reliability separately for the 12

outcome areas, by type of interviewer, and by type of consumer. Detailed

qualitative analysis also was done, to identify specific challenges to

reliability.

This session will present findings from the reliability test, with particular

emphasis given to the qualitative results and the implications for

development and implementation of this type of approach to assessing

quality.

Integrating person-centered, outcome-driven long-term care

planning and quality assurance: The PEONIES approach

Sarita L. Karon, PhD, Center for Health Systems Research and Analysis,


Documents

Creating inclusive disability communities