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Meeting the Nation’s Needs for Personal Assistance Services: Center for PAS

Meeting the Nation’s Needs for Personal Assistance Services: Center for PAS . Charlene Harrington, Ph.D. Robert Newcomer, Ph.D. Mitch LaPlante, Ph.D. Steve Kaye, Ph.D. Susan Stoddard, Ph.D. Martin Kitchener, Ph.D. Mike Oxford Department of Social & Behavioral Sciences

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Meeting the Nation’s Needs for Personal Assistance Services: Center for PAS

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  1. Meeting the Nation’s Needs for Personal Assistance Services:Center for PAS Charlene Harrington, Ph.D. Robert Newcomer, Ph.D. Mitch LaPlante, Ph.D. Steve Kaye, Ph.D. Susan Stoddard, Ph.D. Martin Kitchener, Ph.D. Mike Oxford Department of Social & Behavioral Sciences University of California, San Francisco

  2. Center for Personal Assistance Services The RRTC Center for PAS was established at the University of California San Francisco in 2003, funded by a 5-year program grant ($4.5m) from the National Institute on Disability & Rehabilitation Research (NIDRR).

  3. Personal Assistance Services PAS refers to formal and informal help provided to people with disabilities to assist them in tasks essential for daily living. PAS, along with assistive technology such as wheelchairs, text readers and hearing aids, helps people with disabilities to participate in activities at home, at work and in the community.

  4. Center for PAS Overall Long Term Goal To ensure that people with disabilities can live independently

  5. Center for PAS : Goals • Intermediate goal: To expand access to high quality PAS at home, at work, and in the community • Short term goal: To produce high quality research that is valuable to PAS users, advocates, policy makers, researchers, employers, and others at the local, state & national levels

  6. Center for PAS The Center provides research, training, dissemination & technical assistance on four main issues: Project 1: Formal & Informal PAS Project 2: PAS in the Home & Community Project 3: PAS Workforce Project 4: Workplace PAS

  7. Research Project 1: Formal and Informal PAS Mitch LaPlante, Ph.D., UCSF Steve Kaye, Ph.D., UCSF Taewoon Kang, Ph.D., UCSF • Study the relationship between formal and informal PAS and care giving support and the role of assistive technology • Activities: 9 studies using national survey data from the National Health Interview Survey on Disability and the SIPP

  8. Research Project 1: Formal and Informal PAS • Specific studies examine: • Unmet needs for PAS • IADL/ADL levels by age • Differences in informal PAS hours • Differences in paid PAS hours • Changes in Need for PAS over time • PAS Need by age from different sources • Profiles of People Needing PAS • Out-of-pocket costs for PAS • Profiles of informal helpers

  9. Research Project 1: Unmet Need for Personal Assistance Services • Those who need help in 2+ ADLs and have unmet needs have a shortfall of 16.6 hours/wk • Those with unmet need are more likely to be nonwhite, female, live alone, have a greater needs, and have higher rates of adverse consequences in 48 of 53 measures • The annual cost of eliminating unmet need for persons with incomes under 300% of the SSI level is between $3.4-$9.8 billion LaPlante, Kaye, Kang, and Harrington. (2004). Journal of Gerontology: Social Sciences. 59B (2):S98-S108.

  10. Research Project 2: Home & Community PAS Martin Kitchener, Ph.D., UCSF Charlene Harrington, Ph.D., UCSF Joe Mullan, Ph.D., UCSF Rani Eversley, Ph.D., UCSF • Study of HCBS PAS, including federal & state policies and programs, barriers, new models, and best practices

  11. Research Project 2: Home & Community PAS • Activities: tracking and analyzing PAS participants, expenditures, policies, programs, litigation, Olmstead plans, nursing home transition programs, federal and state demonstration projects • Interviews (24 individuals) and 7 focus groups with people who use paid PAS in selected states to identify barriers and criteria for best practices • Interviews of key informants to identify new models and best practices

  12. US Medicaid LTC Expenditures, 2002 Total: $82 billion Source: Burwell, 2003. CMS Form 64 Expenditure Data. Cambridge, MA: MedStat

  13. Waiting Lists for HCBS Waivers in Selected States in 2002 Georgia 9,407 Louisiana 9,817 Indiana 7,343 Mississippi 4,800 North Carolina 7,146 Texas 74,244 New Mexico 6,271 Wisconsin 8,734 155,884 Total Kitchener, Ng, & Harrington 2003. Waiver Policies HHCCSQ. Forthcoming

  14. Research Project 2: Medicaid Community Based Programs • Study of Medicaid home and community based use and expenditures for 1992-99 • States that spent more had • Greater percentages of aged people • Smaller percentages of minority populations • Higher per capita income • More generous Medicaid reimbursement rates and eligibility • Larger supply of home health agencies Kitchener, M., Carrillo, H. and Harrington, C. (2004). Inquiry. 40 (4): 375-389.

  15. Research Project 2: Home & Community PAS • Nancy Miller, Ph.D., University of Maryland, Baltimore County • Study of institutionalized young people to understand the factors related to institutionalization and the process that resulted in institutionalization • Data source: Interviews of 100 individuals in institutions in the San Francisco, CA Bay Area and Washington, DC

  16. Research Project 2: Home & Community PAS • Brant Fries, Ph.D., and Mary James, University of Michigan • Study includes: • A profile of PAS users • An analysis of service intensity and outcomes • An analysis of the impact of PAS on caregiver burden and level of support • Data: Michigan Department of Community Health MI Choice Information System (MICIS) Data on 26,469 people, 1998 to 2002.

  17. Research Project 3: PAS Workforce Robert Newcomer, Ph.D., UCSF Susan Chapman, Ph.D., UCSF Center for the Health Professions Teresa Scherzer, Ph.D., UCSF • Study the PAS workforce and workforce development • Content analysis of reports, documents, and literature -- 500 bibliographic citations • Identification of best practices in the workforce using best practice criteria – 44 best practices • Evaluation of best practices using case studies

  18. Research Project 3: PAS Workforce • Major areas of focus across the US • Wages, Benefits, and Worker Support • Education and Training • Recruitment and selection • Retention strategies • Communications/coordination • Strategies to create high quality jobs • Special study of state PAS program in California – New findings about negative impact of cutting 74,000 people from the program

  19. Research Project 3: PAS Workforce Partners: • Vera Salter, Ph.D., Director, National Clearinghouse on the Direct Care Workforce, Paraprofessional Healthcare Institute (PHI) NY - non-profit institute on health care employment and advocacy. • Link to website • Collect best practice profiles • Conduct state surveys of workforce practices • Robyn I. Stone, Dr.P.H., Institute for the Future of Aging, a non-profit organization funded by CMS and ASPE to provide a National Resource Center on Home and Community Based Services Clearinghouse.

  20. Research Project 4: Workplace PAS Susan Stoddard, Ph.D., FAICP, President of InfoUse, Berkeley, CA Lewis Kraus, M.P.H, InfoUse Vice President • Study workplace PAS and evaluate models to eliminate barriers and establish best practices • Interviews with consumers, employers, employment organizations (60 total in Year 1) • Tracking state and federal policies including Medicaid buy-in programs

  21. Research Project 4: Workplace PAS Partner: • The Job Accommodation Network (JAN) is a service of the U.S. Dept.of Labor’s Office of Disability Employment Policy at West Virginia University Research Corporation, that provides workplace accommodation information • Studies include: • Telephone focus group studies with 50 selected employers from JAN list of 10,000 employers • Mail survey of employers • Tracking of PAS workplace changes • PAS Job Accommodation Ideas report

  22. Training, Dissemination and Technical Assistance • Lewis Kraus and Susan Stoddard, InfoUse • Mike Oxford, PAS Consumer Research Director and Executive Director, Topeka Independent Living Resource Center and President, NCIL New website: www.PAScenter.org Quarterly email newsletters Published papers, presentations, reports

  23. Training Goals • Develop detailed plans for target audiences & training • Ensure appropriateness for the target population • Ensure that the training is understandable and useful • Conduct training reviews – draft and product reviews before final release

  24. Training and Dissemination Target Groups • Graduate training at UCSF – involves a number of graduate students and courses • Graduate and undergraduate training at UC Berkeley • Public Policy Makers • PAS Users • Employers • Provider agencies • Providers • Personal assistants

  25. Training Outreach to Providers and Consumers • Work with SCILs and Blue Ribbon Advisory Committee • Work with CILs • Train the Trainers • Develop specific consumer materials • Train at National and Regional Conferences • Work with RTC on Independent Living Center Management

  26. 19 Member Blue Ribbon Advisory Committee • Meet in person in the 2nd and 4th Year • Have regular meetings by telephone • Review the research projects and provide assistance with data collection, criteria for projects, selection of best practices and other activities • Review product drafts and final products • Critique training programs and dissemination plans

  27. Center’s On-going Evaluation Plans • Meeting the project’s plans and timelines • Producing high quality research that is valuable to users • Ensuring wide dissemination, training, and technical assistance • Ultimately, having a policy impact at the local, state, and national levels

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