Living independently and personal assistance services: From court research to action

1. Living independently and personal assistance services: From court research to action Lewis Kraus, Director of Training and Dissemination, Center for Personal Assistance Services Mike Oxford, Executive Director, Topeka Independent Living Resource Center Steve Gold, Attorney

2. Center for Personal Assistance Services The Center for PAS was established at the University of California San Francisco in 2003 through 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, help 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 • Study the relationship between formal and informal PAS and care giving support and the role of assistive technology • Conduct studies using national survey data • Data on people with a disability and people with a self-care disability by state • Number of home and personal care workers by state

8. Research Project 2: Home & Community PAS • Study of HCBS PAS, including federal & state policies and programs, barriers, new models, and best practices • Tracking and analyzing Medicaid and waiver data, PAS participants, expenditures, policies, programs, litigation, Olmstead plans, nursing home transition programs, federal and state demonstration projects

9. Research Project 3: PAS Workforce • Major areas of focus include best practices in • 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 IHSS program in California • Working with National Clearinghouse on the Direct Care Workforce, and The Institute for the Future of Aging

10. Research Project 4: Workplace PAS • Study workplace PAS and evaluate models to eliminate barriers and establish best practices • Interviews with PAS users, employers, employment organizations • Tracking state and federal policies including Medicaid buy-in programs • Conducted by InfoUse working with the Job Accommodation Network (JAN) - a service that provides workplace accommodation information

11. Center Resources • http:// www.PAScenter.org • Quarterly email newsletters • Center publications • Center presentations • PAS research of note • Important news • Sign up on website

12. Website http://www.pascenter.org • Two strategies for searching website • Via projects • Via resources • Each of four projects has a page • About that project • State information related to that project • Reports and publications of the project • Library of relevant research • Presentations made • Relevant links

13. Website http://www.pascenter.org • PAS Users page • Guide to using PAS (How to be an employer) • Ask Mike (Mike Oxford will answer your questions!!) • Web Links (Resources) • PAS Testimonials (Real PAS users’ stories) • PAS Radio (Radio shows about PAS) • Help in my state (agency information for your state) • Training Resources (Employer, consumer direction for PA’s)

14. Website http://www.pascenter.org • Website resources • State information • Events (conferences) • News Archive • Newsletter archive • Center publications • Library of relevant studies • Center presentations • Links (also to DCC and JAN)

16. State information • For each state, there are: • State disability statistics • # and % with a disability and self-care disability, by disability type, gender, age, race, ethnicity, family income, benefit recipiency, employment status, and living arrangement. • Home and personal care workers by state • # of workers • Workers per 1000 population • Workers per 1000 people with a self care disability • From American Community Survey (CENSUS)

19. State information • For each state, there are: • State Program Data • Medicaid Waiver data • State Medicaid HCBS • Federal HCBS funding • State funded HCBS • State Olmstead plans and Lawsuits • Research and Demonstration projects to improve the PAS workforce by state

24. State information • For each state, there are: • Resources and agencies related to PAS • Contacts and descriptions for state Medicaid waivers • State Agencies related to PAS • Medicaid Agency • Mental Health Services • State Unit on Aging • Protection and Advocacy Agency • Independent Living Centers

26. State information • For each state, there are: • Resources and agencies related to PAS • State Resources for Employment of PWD • Benefits Planning Assistance and Outreach Centers (BPAOs) • Business Leadership Networks (BLNs) • Disability and Business Technical Assistance Centers (DBTACs) • Vocational Rehabilitation Offices • Citations to publications related to states • Links by state