Rehabilitation Researchand Training Center on

Employment Policy for Persons with Disabilities

May 22, 200910 am to 12 pm

Cornell University Government Affairs OfficeHall of States, Room 333

444 North Capitol Street, NWWashington, DC 20001

www.EmploymentPolicyRRTC.org

Susanne M. Bruyère, Ph.D., Project DirectorEmployment and Disability InstituteCornell University201 Dolgen HallIthaca, New York 14853-3901

Tel: (607) 255-9536 Fax: (607) 255-2763TTY: (607) 255-2891 Email: smb23@cornell.eduWeb: www.EmploymentPolicyRRTC.org

David C. Stapleton, Ph.D., Research DirectorMathematica Policy Research, Inc. 600 Maryland Avenue, SW, Suite 550Washington, DC 20024

Tel: (202) 484-4224 Fax: (202) 863-1763Email: dstapleton@mathematica-mpr.comWeb: www.mathematica-mpr.com

Richard V. Burkhauser, Ph.D., Co-Principal InvestigatorPolicy Analysis and ManagementCornell University125 Martha Van Rensselaer HallIthaca, New York 14853

Tel: (607) 255-2097 Fax: (607) 255-4071Email: rvb1@cornell.edu

National Health Care Reform: What the Disability Community Needs from the Current Effort to Advance our

Employment Agenda

A Public Policy Forum

Contact Information

This project is funded by the U.S. Department of Education, National Institute on Disability and Rehabilitation Research.Grant Number: H133B040013

Funding Agency

The panel is led by Peter Thomas, a co-chair of the Consortium for Citizens with Disabilities (CCD) Health Care Task Force and long-time leading health policy advocate in the disability community, and Day al-Mohammed, a co-chair of the CCD Rights Task Force and active blogger on disability and health policy issues.

Our two reactors from the disability community are Ari Ne’eman, President and Founder of the Autistic Self-Advocacy Network and Barbara Kornblau, who has been spearheading health reform activities for the Special Olympics and is active in a number of disability and civil rights coalitions working on the issue.

Program Topic

This forum looks at the needs of the disability community through a timely discussion of the health care reform effort. The panel will give an update on where things stand, what is at stake for the disability community, and where there are opportunities to make policy changes in the coming months that will advance the ability of people with disabilities to participate fully in the labor market.

Speakers For more information contact:

Erika L. Eckstrom, Administrative SupportCornell University, Employment and Disability Institute201 Dolgen Hall, Ithaca, NY 14853-3901

Tel: (607) 254-8311Email: ee224@cornell.edu

This Center is funded to Cornell University by the U.S. Department of Education, National Institute on Disability and Rehabilitation Research (Grant No. H133B040013). The content presented does not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government (Edgar, 75.620 (b)), nor is it endorsed by Cornell University or the American Association of People with Disabilities.

National Health Care Reform: What the Disability Community Needs from the Current Effort to

Advance Our Employment Agenda

Friday, May 22, 2009 - 10:00am-12:00pm

Cornell University, Government Affairs Office

Hall of States, Room 333

444 North Capitol Street, NW

Washington, DC 20001

Andrew J. Imparato, American Association of People with Disabilities

Susanne M. Bruyère, Cornell University, Employment and Disability Institute

Peter W. Thomas, Principal, Powers Pyles Sutter & Verville, P.C.

Day al Mohamed, Sr. Legislative and Federal Affairs Officer, American Psychological Association

Ari Ne’eman, Founding President, Autistic Self Advocacy Net work

Barbara Kornblau, Special Olympics

AgendaRecent Publications

Blessing, C., Golden, T., & Bruyère, S., (2009). Evolution of U.S. employment and disability policies and practices: Implications for global implementation of person-centered planning. In C. Marshall, E. Kendall, M. Banks, & R. Gover (Eds.), Disability: Insights from Across Fields and Around the World: Vol. 3. Responses: Practice, Legal, and Political Framework.. pp. 1-16 Westport, CT: Praeger.

Bruyère, S., Golden, T., & Cebula, R. (in press). Legislation Affecting Employment for Persons with Disabilities. In E. Szymanski & R. Parker (Eds.), Work and Disability: Issues and Strategies for Career Development and Job Placement (3rd Ed.) Austin, TX: Pro-Ed.

Burkhauser, R., Feng, S., Jenkins, S. (in press). Using a P90/P10 ratio to measure inequality trends with the Public Use Current Population Survey: A view from inside the Census Bureau vaults. Review of Income and Wealth.

Burkhauser, R., & Houtenville, A. (in press). Employment among working-age people with disabilities: What current data can tell us. In E. Szymanski & R. Parker (Eds.), Work and Disability: Issues and Strategies for Career Development and Job Placement (3rd Ed.) Austin, TX: Pro-Ed. .

Golden, T., Zeitzer, I., & Bruyère , S. (in press) New approaches to disability in social policy: The case of the United States. In T. Guloglu (Ed.), Social Policy in a Changing World. MV Wissenschaft Publishing.

Houtenville, A., Stapleton, D., Weathers, R., & Burkhauser, R. (eds.) (in press). Counting working-age people with disabilities: What current data tell us and options for improvement. Kalamazoo, MI: W.E. Upjohn Institute for Employment Research.

Jenkins, S., Burkhauser, R., Feng, S., & Larrimore, J. (2009, February). Measuring inequality using censored data: A multiple imputation approach. Center for Economic Studies Working Paper

Livermore, G. & Goodman, N. (2009, February). A review of recent evaluation efforts associated with programs and policies designed to promote the employment of adults with disabilities. Washington, DC: Mathematica Policy Research. .

She, P., & Livermore, G. (2009). Long-term poverty and disability among working-age adults. Journal of Disability Policy Studies, 19, 244-256.

Panel

Welcome & Introduction

Peter Thomas, a principal at Powers Pyles Sutter & Verville, has a federal law and legislative practice in the areas of health care, rehabilitation, disability, and employment. He currently focuses his practice on health care reform, rehabilitation research appropriations, and Medicare coverage and reimbursement policy, specializing in assistive technology such as artificial limbs and orthopedic braces.

Mr. Thomas served as Chair of the Subcommittee on Consumer Rights, Protections, and Responsibilities of the President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry, where he was responsible for shepherding the Patients Bill of Rights through the Commission for presentation to President Clinton. He also served on the Advisory Boards of the Agency for Healthcare Research and Quality (AHRQ) as well as the National Center for Medical Rehabilitation Research at NIH. He currently serves as co-chair of the Health Task Force of the Consortium for Citizens with Disabilities, a Washington-based working coalition of 120 national disability-related organizations and has personal experience with disability.

Day Al-Mohamed currently serves as a Senior Legislative and Federal Affairs Officer with the American Psychological Association (APA). She manages APA’s legislative and regulatory activities related to public interest policy issues in the arenas of Disability and Ethnic Minorities. This involves influencing policy-making activity on Capitol Hill and regulatory activities in the federal agencies; developing and implementing strategies for enhancing the utilization of psychological research to advance public interest issues. She is a member of the Consortium for Citizens with Disabilities (CCD) Board of Directors and serves as a co-chair on the CCD Civil Rights Task Force. She is an active member of several other Task Forces including Emergency Preparedness, Education and Health.

In her previous position, she served as Director for the American Council of the Blind’s Department of Advocacy and Governmental Affairs providing expertise and information in the form of technical assistance and support to both consumers and various advisory committees and governing bodies on legislative and regulatory issues relating to such varied subjects as: the Telecommunications Act, Voting System Guidelines, Broadband Technical Specifications, Pedestrian Rights of Way, Social Security Privatization concerns and Emergency Preparedness.

Biographies Related Publications (cont.)

Livermore, G., Stapleton, D., Nowak, M., Wittenburg, D., & Eiseman, E. (2000). Economics of policies and programs affecting the employment of people with disabilities. Ithaca, NY: Cornell University, Rehabilitation Research and Training Center for Economic Research on Employment Policy for People with Disabilities.

O’Day, B., Stapleton, D., Horvath-Rose, A. (2007). Health insurance coverage among youth and young adults with work limitations. Ithaca, NY: Rehabilitation Research and Training Center on Disability Demographics and Statistics, Cornell University.

Patterson, J., Bruyere, S., & Jenkins, W. (2004). Legislative foundations of rehabilitation and related services. In R. Parker, E.Szymanski & J.Patterson (Eds.), Rehabilitation Counseling: Basics and Beyond. (pp 27-46). Austin, TX: Pro-Ed.

Stapleton, D. & Erickson, W. (2005). Characteristics or incentives: Why do employment outcomes for the SSA beneficiary clients of VR agencies differ, on average, from those of other clients? Ithaca, NY: Cornell University, Rehabilitation Research and Training Center for Economic Research on Employment Policy for People with Disabilities.

Stapleton, D. & Tucker, A. (2000). Will expanding health care coverage for people with disabilities increase their employment and earnings? Evidence from an analysis of the SSI Work Incentive Program. In D. Salkever & A. Sorkin (Eds.), Research in Human Capital and Development, 13, 133-180.

Stapleton, D., Wittenburg, D., Fishman, M., & Livermore, G. (2000). Transitions from AFDC to SSI prior to welfare reform. Ithaca, NY: Cornell University, Rehabilitation Research and Training Center for Economic Research on Employment Policy for People with Disabilities.

Wittenburg, D., Chan, E., & Stapleton, D. (2000). Policy brief: Impacts of expanding health care coverage on the employment and earnings of participants in the SSI work incentive program. Ithaca, NY: Cornell University, Rehabilitation Research and Training Center for Economic Research on Employment Policy for People with Disabilities.

Before her legislative work here in Washington DC, Ms. Al-Mohamed’s career has included work in advocacy and legislative initiatives on behalf of many disenfranchised groups. She has worked on the planning committee for the Civil Rights Group of the Cambio de Colores conference; the largest conference that directly addresses the various issues faced by Latino immigrants to the Midwest. Prior to that, she was a representative of the ISC-ICC to the Preparatory Commission of the International Criminal Court (ICC) at the United Nations, reporting on the activities of the Victim’s Trust Fund Working Group which addressed the needs of victims of genocide on a global scale.

Ari Ne’eman is the Founding President of the Autistic Self Advocacy Network, a non-profit organization of adults and youth on the autism spectrum. He is currently studying Political Science at the University of Maryland-Baltimore County as a Sondheim Scholar of Public Affairs.

Ari is an Asperger’s autistic and has been active in the autistic culture, neurodiversity and disability rights movements. He first became involved in self-advocacy as a high school student, arguing for his own inclusion and access to high level academic coursework. He later became involved in disability and education policy advocacy.

He recently served as the Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. Ari is on the board of TASH and the Autism National Committee and is currently the Vice Chair of the New Jersey Adults with Autism Task Force. Ari served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability, the Public Policy Chair for the New Jersey Coalition for Inclusive Education and a member of the Steering Committee of the New Jersey Olmstead Implementation and Planning Advisory Council advising the NJ Department of Human Services on de-institutionalizing adults with developmental disabilities in the wake of the landmark Olmstead v. L.C. Supreme Court case.

Amongst other things, his advocacy work has included coordinating the campaign to stop the NYU Child Study Center’s Ransom Notes ad campaign, achieving representation for autistic self-advocates in numerous state policymaking bodies and arranging for the inclusion of Augmentative and Assistive Communication (AAC) technology in the insurance mandate component of the Autism Treatment Acceleration Act. In his capacity as

Biographies (cont.)

Golden, T., & Jones, M. (2002). SSI and postsecondary education support for students with disabilities. Impact, 15(1).

Goodman, N., & Stapleton, D. (2005). Research report: Federal program expenditures for working-age people with disabilities. Ithaca, NY: Cornell University, Rehabilitation Research and Training Center for Economic Research on Employment Policy for People with Disabilities.

Goodman, N., & Stapleton, D. (2007). Federal program expenditures for working-age people with disabilities. Journal of Disability Policy Studies, 18(2).

Goodman, N., Stapleton, D., Livermore, G., & O’Day, B. (2007). The health care financing maze for working age people with disabilities. Ithaca, NY: Cornell University, Rehabilitation Research and Training Center on Employment Policy for People with Disabilities.

Guo, X., & Burton, J. (2007). The relationship between workers compensation and disability insurance. Paper presented at the annual Labor and Employment Relations Association meeting January 4, 2008, New Orleans LA.

Hemmeter, J. , Kauff, J., & Wittenburg, D. (2008). Changing circumstances: Experiences of child SSI recipients before and after their age-18 redetermination for adult benefits. Washington, DC: Mathematica Policy Research.

Hill, C., Livermore, G., & Houtenville, A. (2003). Rising health care expenditures and the employment of people with high-cost chronic conditions. In D. Stapleton & R. Burkhauser (Eds.), The Decline in Employment of People with Disabilities: A Policy Puzzle. Kalamazoo, MI: W.E. Upjohn Institute for Employment Research.

Livermore, G., Nowak, M., & Wittenburg, D. (2000). Policy brief: Policies and programs affecting the employment of people with disabilities. Ithaca, NY: Cornell University, Rehabilitation Research and Training Center for Economic Research on Employment Policy for People with Disabilities.

Related Publications (cont.)

Related Publications

President of the Autistic Self Advocacy Network, he organizes social/support networks for youth and adults on the autism spectrum, promotes self-advocate involvement in the policymaking process and regularly presents and advises on issues relating to the autism spectrum, disability policy, special education and the neurodiversity movement.

Barbara L. Kornblau, JD, OTR/L, FAOTA, DAAPM, ABDA, CDMS, CCM, is a Professor of Public Health and Occupational Therapy and an Adjunct Professor of Law at Nova Southeastern University, and a Past President of the American Occupational Therapy Association.

As the recipient of the prestigious Robert Wood Johnson Health Policy Fellowship (2006-2007), she worked for Senators Harkin and Rockefeller on health and disability issue. She provides consultation in health and disability policy to Special Olympics. Her law practice focuses on health and disability law. She has lectured nationally and internationally about health policy, ethical and legal issues in healthcare, pain management, work rehabilitation, autism spectrum disorders, case management, and interventions to promote participation and quality of life.

She has published over 150 publications, including books, book chapters, peer-reviewed papers, and other publications in occupational therapy, law, health and disability policy, work rehabilitation, pain management, and case management, and is co-editor of the book Work: Principles and practices.

She is the parent of 6 adult children with disabilities.

Bruyère, S. & Houtenville, A. (2006). The Use of Statistics from National Data Sources to Inform Rehabilitation Program Planning, Evaluation, and Advocacy. Rehabilitation Counseling Bulletin 50(1), 46-58.

Bruyère, S., & Brown, J. (2003). Legislation impacting employment for persons with disabilities. In E. Szymanski & R. Parker (Eds.), Work and Disability: Issues and Strategies in Career Development and Job Placement, (2nd ed., pp. 27-52). Austin, TX: Pro-Ed, Inc.

Bruyère, S., & VanLooy, S. (2005). Legislation and rehabilitation service delivery. In M. Eisenberg, R Glueckauf, & H. Zaretsky (Eds.), Medical Aspects of Disability: A Handbook for the Rehabilitation Professional, (3rd ed., pp 827-850). New York: Springer Publishing.

Burkhauser, R., & Stapleton, D. (2003). Introduction. In D. Stapleton & R. Burkhauser (Eds.), The Decline in Employment of People with Disabilities: A Policy Puzzle. Kalamazoo, MI: W.E. Upjohn Institute for Employment Research.

Burkhauser, R., & Stapleton, D. (2004). The decline in the employment rate for people with disabilities: Bad data, bad health, or bad policy? Journal of Vocational Rehabilitation, 20(3), 185-201.

Burkhauser, R., Butler, J., & Gümüs G. (2004). Dynamic modeling of the SSDI application timing decision: The importance of policy variables, [Abstract]. Welfare State and Labor Market, Institute for Study of Labor (IZA), Discussion Paper No. 942.

Burkhauser, R., Butler, J., & Gümüs G. (2004). Dynamic programming model estimates of Social Security Disability Insurance application timing. Journal of Applied Econometrics, 19, 671–685.

Burkhauser, R., Butler, J., & Weathers, R., II (1999). How policy variables influence the timing of Social Security Disability Insurance applications. Social Security Bulletin, 64(1), 52-83.

Burkhauser, R., Butler, J., & Weathers, R., II (2001). Policy brief: How policy variables influence the timing of Social Security Disability Insurance applications. Ithaca, NY: Cornell University, Cornell University, Rehabilitation Research and Training Center for Economic Research on Employment Policy for People with Disabilities.

Biographies (cont.)