AAMR F.Y.I. Talks to Susan Parish

This is part of a series of interviews with members of the American Association on Mental Retardation (AAMR), representing a range of professions in the developmental disability field.

Dr. Susan Parish is currently Assistant Professor of Social Work at the University of North Carolina at Chapel Hill. From 1996-2002, Dr. Parish worked on the well-known State of the States in Developmental Disabilities study¹ that tracks public spending on mental retardation and developmental disability (MR/DD) spending in the United States. During that time, Dr. Parish published extensively on such issues in the MR/DD system as federal income transfers, individual family support spending, waiting lists, and more. More recently, Dr. Parish has written on poverty, care giving, women's health, and policy issues within the developmental disability field.²

AAMR F.Y.I.: In a recent article,³ you spoke about the impending crisis in long-term care in America. In 2010, when the population of baby boomers will begin retiring in America, persons with intellectual disabilities will compete neck to neck with this population for long term care services. Can you talk about the factors contributing to this crisis?

Parish: A number of scholars have written about this issue, but I felt it was important to bring the issue to the forefront for social workers, who work with families across all social service settings, including those that are well beyond the traditional intellectual disability service system. The convergence of factors includes the fact that technological and other medical advances have contributed to increasing life expectancies for people with intellectual disabilities. For the first time in U.S. history, the vast majority of adults with intellectual disabilities are expected to outlive their parent caregivers. However, the long-term care system for people with intellectual disabilities is underfunded, and most people with intellectual disabilities receive “long-term care” informally, or from their family caregivers, particularly women.

The formal system in most states is wholly unprepared for what will happen when the parents of these aging folks with intellectual disabilities outlive their parent-caregivers. Tamar Heller and her colleagues at the University of Illinois at Chicago have done some important work to construct a framework that will support families to plan for their loved one's futures⁴. But without the infusion of significant new money, which will require substantial political will, I feel that aging adults with intellectual disabilities are in a precarious position. Another important issue is that as baby boomers age, the intellectual disabilities service system will be competing for direct care workers with the service system for the elderly.

AAMR: I want to ask you about the direct care workers issue, but first, why bring this issue to the attention of social workers in particular?

Parish: Glenn Fujiura and others have highlighted the fact that most people with intellectual disabilities receive care from family members, not from the intellectual disability (ID) long-term care system. As such, many people with intellectual disabilities never encounter ID service providers or other professionals. But social workers are positioned throughout the network of human services. They encounter people with intellectual disabilities in every conceivable type of social service agency: child protective services, services for intimate partner violence, soup kitchens, schools, senior centers and other services for the aging, and so forth. They are therefore positioned to be “early responders” if you will, to these folks and their families.

AAMR: So what you are saying is that social workers are uniquely poised to provide support services to persons with intellectual disabilities?

Parish: Yes.

AAMR: A recent report by the National Council on Disability points out that there is not even a central federal program, agency, or congressional committee charged with managing long-term services and supports (LTSS) in America and that dramatic reforms are needed to sustain LTSS in America. Your thoughts?

Parish: This critical issue will require concerted advocacy to bring it to the forefront of public policy. Advocates in the intellectual disability field have achieved great things in the past few decades–largely but not completely transforming an inhumane residential service system into one that is much more focused on individualized supports that enable people to realize their own dreams and be fully integrated into their home communities. We're not there yet, but the movement continues. Similar levels of advocacy and commitment will be required to actually provide adequate supports to aging adults with intellectual disabilities whose elderly parents can no longer care for them. A centralized federal response to this issue would be an important first step toward crafting needed policy changes.

AAMR: Now to the direct support worker shortage issue. What do you make of it? The United States government predicts a 63% increase in demand for disabilities direct support staff through the year 2010 and the current pay scale for direct support professionals is approximately close to the 2000 poverty level for a family of four!

Parish: Caregiving has historically been devalued for all populations: people with disabilities, the elderly, and children. Paid caregivers in the intellectual disabilities field receive among the lowest wages and status of any workforce. For unpaid family caregivers, the time they spend caring for a loved one with disabilities reduces the time they spend in employment. Reduced paid employment for caregivers decreases the work credit they accrue within the Social Security system, so their retirement benefits are simultaneously reduced. This seems grossly unfair, since the care they provide saves state and federal governments billions of dollars. I believe that this is another issue that requires a comprehensive, thoughtful policy response. Notably, most proposals that I've seen to privatize Social Security have completely ignored this facet of the penalties associated with caregiving.

AAMR: Let's move to Medicaid, a topic prime on everyone's mind. Medicaid is the main and sometimes the only funding source of services for people with intellectual disabilities. States are facing the worst fiscal crisis since World War II and as you know, President Bush's budget proposes to save $13.7 billion over 5 years in Medicaid spending. Given that Medicaid supports over half a million persons with intellectual disabilities, why in your opinion is it in a constant state of turbulence? What is it that our political leaders do not get or ignore?

Parish: One important issue in understanding why Medicaid doesn't receive the same type of support as other programs, like Medicare or Social Security, is that the population receiving Medicaid has traditionally not had political power. Remember that Medicaid is typically perceived as health insurance for poor people, and expanding any program for the poor is not popular right now. People with disabilities and their advocates and allies have done some remarkable work to secure Medicaid coverage.

However, Medicaid's importance in covering the disabled population is not widely understood. Politicians respond to the pressure their constituents bring to bear -- the reason no politician is credibly seeking to reduce Medicare spending is because of the political power of the elderly, which ensures that their programs are not cut. Until people with disabilities and their advocates and allies are able to hold politicians accountable for the services that are available for people with disabilities, there is little hope that our elected leaders will take the initiative to champion these issues. In the past, few elected leaders have emerged to champion the needs of people with disabilities unless they were related to a person with disabilities.

There are some important issues related to Medicaid that also impact its costs and financing. First, it covers the sickest and poorest in the population. Unlike in almost every other developed (and many developing) countries around the world, in the U.S., the risk, or cost of caring for the sickest and poorest people is borne by Medicaid. If there was some form of single payer insurance or universal coverage, the lower costs of the healthy could be used to offset the cost of the sick. That doesn't happen here in the United States.

Another important problem with Medicaid is that states that are poorest have the greatest reliance on, and need for Medicaid. And yet they are in the worst position to finance the program. It's important to remember here that states receive federal Medicaid funding, but Medicaid still consumes an enormous part of state budgets.
The fact that serious Medicaid cuts were entertained immediately after Hurricane Katrina exposed some of the depth of poverty in New Orleans is extremely troubling. My sense is that we are living in a time that requires moral leadership to protect the most vulnerable citizens, and this includes poor people and people with disabilities.

AAMR: Talking about leadership, in an interesting study⁵ of two state trends in deinstitutionalization—Michigan and Illinois—during the 1970s and 1980s, you pointed out that leadership was perhaps the most significant factor that affects a state's approach to MR/DD services. Recently, Braddock and Rizzolo commented about a state's political culture determining prevalence of institutions and nursing homes (See AAMR F.Y.I., Volume 5, No.2). Your comments?

Parish: Leadership is the bottom line, and it occurs within the state, so state political culture is important. What I found in studying Illinois and Michigan was that it was much easier for advocates to work together, and for committed leaders to be successful, in a state like Michigan, with its open political culture. It is much more difficult for advocates of people with intellectual disabilities to influence policy in states with closed political cultures, including those in which election financing ultimately dictates the terms of policy development (pay to play systems). Lobbying and other political scandals are hardly new, but it's easy to see why people with intellectual disabilities and their advocates have limited influence. Adults with intellectual disabilities are an exceptionally impoverished and often marginalized group. Securing resources for them is not easy.

AAMR: Also in a recent study,⁶ you presented evidence that existing social policy is inadequate in reducing poverty and low employment among persons with mental retardation. Can you explain?

Parish: In one study, I examined the receipt of federal income transfers (Disability Insurance (DI) and Supplemental Security Income, SSI) for people with intellectual disabilities. What I found was that most adults with intellectual disabilities are not receiving SSI or DI, and what they do receive is typically not enough to raise their income level above the so-called federal poverty level (which was $20,000 for a family of 4 in 2006). No surprise for some audiences, but these adults are among the poorest and most marginalized members of U.S. society.

AAMR: It is true that we are seeing a general decline in institutions⁷ and an increase in money being poured into community services (HCBS Waiver at 36% of Medicaid spending in 2004 as opposed to 14% in 1991). However, it does seem that deinstitutionalization and community living comes hard in the U.S. as opposed to our Canadian counterparts, who seem to be pouring in millions of dollars into community and supported living initiatives. Part of this may be our particular time in history. Or are we doing something to perpetuate the wrong trend? Comments?

Parish: Decades ago, Steven Taylor (Editor of Mental Retardation) and his colleagues identified the institutional bias in Medicaid as an important problem that would hamper the development of community services. While this bias has certainly been reduced, Medicaid is still a significant source of funding for institutions. Until the dollars are actually tied to providing the supports people with intellectual disabilities and their families want and truly need, this bias is unlikely to diminish in states with service systems that are pervasively institutional. In some states, institutional service providers have a good deal more political clout than people with intellectual disabilities or their families. Policy changes are likely necessary before these service systems will change.

AAMR: Any other comments for our readers?

Parish: If ever there was a need for assertive advocacy at the state and federal levels, this is that critical time. Much of the good work done in the 1970s and 1980s to improve the living conditions of people with intellectual disabilities can easily be undone if Medicaid funding is cut. I think that very positive developments are occurring across the nation, as more and more people with intellectual disabilities are supported to live their own lives. However, we need advocacy to secure lasting policy changes that will ensure these gains are not lost.

Susan Parish can be reached at parish@email.unc.edu

References

¹Braddock, D., Hemp, R., Parish, S., & Westrich, J. (1998). The state of the states in
developmental disabilities, (5th ed.). Washington, DC: American Association on Mental
Retardation.

² Parish, S.L., & Saville, A.W. (2006). Women with cognitive limitations living in the community: evidence of disability-based disparities in health care. Mental Retardation, 44, 249-259.

³Parish, S.L., & Lutwick, Z.E. (2005). A critical analysis of the emerging crisis in long-term care for people with developmental disabilities. Social Work, 50, 345-354.

⁴See a special issue of the American Journal on Mental Retardation edited by Tamar Heller on the “Introduction to the Special Issue on Aging: Family and Service System Supports” at
http://aamr.allenpress.com/aamronline/?request=get-toc&issn=0895-8017&volume=109&issue=5

See http://www.uic.edu/orgs/rrtcamr/aboutus.htm for more information on the
Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago headed by Tamar Heller

⁵ Parish, S.L. (2005). Deinstitutionalization in Two States: The Impact of Advocacy, Policy, and Other Social Forces on Services for People with Developmental Disabilities. Research & Practice for Persons with Severe Disabilities, 30, 219-231

⁶ Parish, S.L. (2003). Mental retardation and federal income transfers: The political and
economic context. Mental Retardation, 41, 446-459.

⁷Robert Prouty, Kathryn Coucouvanis and K. Charlie Lakin. Fiscal Year 2004 Institution Populations, Movement, and Expenditures by State With National Comparisons to Earlier Years. Mental Retardation, 43, 149-151