Disability Policy:
Uniting Forces for the Social and Economic Inclusion of All People

Megan O’Neilⁱ, World Institute on Disability

What is “policy” and where does it come from? The World Institute on Disability is a policy organization- one of my roles is a “policy analyst and advisor” and it sounds impressive and vague, but what does it really mean? Generally, people tend to think of policy in terms of government regulations or even insurance policies, but in reality policy is everywhere. If you think about policy as the stated or un-stated rules that are developed for the sake of efficiency, order, as well as to promote principles, policy can range from the rules that guide a meeting (“Our policy is that the meetings start promptly at 7:00 PM.”) to the rules that some families use to organize households (“We have dinner every evening at 7:00 PM”). We all accept or violate policies everyday, sometimes without even knowing it.

Government Policy- whether it is Federal, State, or local- originates from a variety of sources. Sometimes government officials make policy based on the suggestions of well-placed individuals, organizations, or corporations, but not always. The disability community has been at the heart of many of the policies formed that impact our daily lives. Contrary to popular belief¹, the American with Disabilities Act (ADA) originated from the community- and it was not one solitary individual. There was no individual that can be credited as the author of the ADA. It was a collaborative process that involved a great deal of work and compromise. That is the other thing about policy- it is always up for negotiation and very few “policies”- especially at higher levels of government- make everyone (or sometimes, no one) happy.

People with disabilities and the grass-roots organizations that serve them have been the driving force behind the ADA, Money Follows the Person (MFP), and the recently introduced Community Choice Act, just to name a few. Considering that so many disabled people are disenfranchised (denied the right to vote for many reasons), are amongst the poorest of the poor, and are an extremely diverse and complex population, it is important to remember that organizations and individuals are out there fighting for the needs and rights- at all levels of government- for all people with disabilities.

One of the most dynamic and misunderstood “policy” grass-roots organizations is ADAPT. Using civil disobedience and non-violent direct action to achieve its goals (starting with accessible public transportation and now focusing on community based services allowing individuals to live in the communities of their choice), ADAPT is rarely seen as a “policy” organization. Yet, if not for their work, many of the recent “policy” achievements that the disability community has made- would not have been possible.

Money Follows the Person

First, let’s look at Money Follows the Person (MFP). On June 22, 1999, the Supreme Court ruled in Olmstead v. L.C and E.W. that needless institutionalization of people with disabilities was discrimination under the Americans With Disabilities Act. However, there was no money to support this decision. According to ADAPT, it is really more of how resources get allocated, rather than a need for enormous new funding. ADAPT states that Medicaid budgets could be “re-directed” and instead of supporting institutional living in nursing homes, money would support community based living options. ADAPT insists that this would actually save Medicaid money (costs for living in the community are 2/3 the average cost of living in an institution).

In 2007, under the federal Money Follows the Person initiative, states applied to the Centers for Medicare and Medicaid Services (CMS-the federal agency) and over the course of the next five years about 40 states will be selected to receive a better federal match (FMAP) for this initiative. Using Money Follows the Person, for the first year a person moves out of an institution and onto community services the federal government will cover a higher percent of the cost of their services and states will pay a smaller portion. After that first year the match rate will return to the regular rate, but even this can save the state money. In January, 17 states were awarded the first tier grants and other states have been given the opportunity to revise and re-submit their proposals. See the CMS website for more information: http://www.cms.hhs.gov/DeficitReductionAct/20_MFP.asp

The Community Choice Act of 2007

Second, the Community Choice Act (S 799 and H.R. 1621) was introduced in the U.S. Senate on March 7, 2007 by Senator Tom Harkin (D-Iowa) and co-sponsored by Senator Arlen Specter (R-Pennsylvania). According to ADAPT, the Community Choice Act provides an alternative and will fundamentally change our long term care system and the prioritization of funding nursing homes instead of home-based, community services (known as "institutional bias") that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice. In addition, people would not be forced into institutions in order to get out on community services; once they are deemed eligible for the institutional services, people with disabilities and their families will be able to choose where and how they receive services. Instead of making a new entitlement, the Community Choice Act, makes the existing entitlement more flexible.

The Community Choice Act establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

So what do MFP & the Community Choice Act have to do with Asset Building?

At a very basic level, people living in institutions obviously have extremely limited opportunities for employment- to become taxpayers instead of recipients of tax-based social services. They also have limited access to their own money. Benefits- like Supplemental Security Income and Social Security Disability Insurance- are taken by the institution and the individual has little to no say over how the money gets spent and they receive only small amounts over which they have direct control (often called "participation").

Financial Literacy
With new initiatives like MFP and the Community Choice Act purposing to invert this system, what happens to individuals after they transition out of institutions? Questions remain on who and how community based services and money will be directed. Some argue that it is unrealistic to expect individuals to have total control over their money and the services they need to live independently. Yet, as Judy Heumann, disability rights leader and co-founder of WID, states, “Independent Living is not doing things by yourself, it is being in control of how things are done..." However, giving people choices without educating them is no “real” choice at all. In the asset building and fiscal management sense, individuals and those designated as “fiscal intermediaries” need basic financial literacy training. If there is one thing the asset building field has learned and can offer the disability community, it is we all can benefit from learning more about money. Giving people control, without providing the tools to help them control their money, is ultimately not very empowering. Disability advocates, especially those in states that received MFP grants, could benefit from collaborating with organizations that offer financial management education.

Affordable, Accessible Housing
On another level, transitioning people out of institutions without meaningful opportunities for community integration defeats the purpose of ADAPT and groups advocating for real choices about how and where people with disabilities live. In 1978, disability activists were revolutionizing the community by establishing the first Independent Living Centers. In Chicago, a woman by the name of Marca Bristo- newly rehabilitated after a spinal cord injury and part of a committee to form a Center in Chicago (Bristo went on to become the first Executive Director of Access Living of Chicago and still serves as director today)- asked the question, “Where do we go after we leave transitional housing when there’s no accessible housing?” While this was nearly 30 years ago, the question is just as relevant today- only in this context, insert institution or hospital for transitional housing. Community Economic Development organizations and government departments, private housing developers, Housing and Urban Development (HUD)’s Public Housing Authorities can work with disability advocates to help solve the accessible, affordable housing crisis that threatens to destroy the promise of integrationist policy- like MFP and the Community Choice Act.

Employment & Health Care
While housing is a basic need, without opportunities for employment and the ability to build assets- people with disabilities will remain on the margins of society. I live in Berkeley, California, home of Ed Roberts, the Independent Living Movement, and where many people with “severe” disabilities have had the ability to self-direct their community based services for over 30 years². While some people call California the “Land of Milk and Honey”, unemployment and extreme poverty is just as prevalent among people with disabilities here as in the rest of the country. While there are numerous factors that cause this, one reason is that policies, while enabling community living, also serve as a trap- forcing individuals to remain on government assistance programs, rather than working. For instance, the Medi-Cal (California’s Medicaid system) has an innovative Medicaid Buy-In Program, called the 250% Working Disabled Program. This program allows people to continue to receive necessary medical care, including attendant services often not covered by private health insurances, while allowing people to earn up to $52,000 (in certain circumstances) annually and still maintain eligibility. However, the program only allows individuals to have $2,000 in assets. How is a person ever supposed to escape poverty if they can only save $2,000? New policy has been proposed (see the May 2007 EQUITY Responds section) to eliminate this barrier.

Conclusion

This is an amazing time for disability and asset building advocates to combine forces and find ways to integrate their objectives. In the disability world, policy sometimes comes from the most unlikely sources. Today, activists from ADAPT are in Washington D.C. fighting for policy that carries the promise of further integrating people with disabilities into the communities of their choice. However, those policies can only be meaningful and help disabled people escape the cycle of poverty if combined with asset building strategies and advocates. There has never been a better time to combine forces for the economic empowerment and equality of all people.

Support the Community Choice Act Today!

i. As the Project Manager of WID’s Access to Assets Program, Ms. O’Neil produces and edits EQUITY e-newsletter, provides information and referral and presents training programs to both disability and asset building community members, and conducts outreach to the disability community to educate on asset building strategies. She was honored with the prestigious 2006 American Association of People with Disabilities (AAPD)/ Paul G. Hearne Award, recognizing emerging leaders in the disability community.

1. Brian Doherty, “Unreasonable Accommodation” Reason August/September 1995, 19-26. Doherty asserts that, “no grass-roots movement campaigned for the bill”. At the same time, Doherty imagines that a well-orchestrated, well-financed disability lobby was mobilized and sent to Washington to ensure passage. In reality many individuals with disabilities, ADAPT, Disabled In Action, the American Council of the Blind and many other organizations used their own limited financial and physical resources to advocate for the ADA.

2. Based on the philosophy of the Independent Living Movement of the 60's, in 1973 the disability community successfully advocated for a new Homemaker-chore program, based on individual need with the consumer in charge of hiring and supervising their worker rather than having an agency provide the worker and which allowed family members to be paid. In the late 1970's it was renamed the In Home Supportive Services (IHSS) program. This kind of consumer-directed in-home care program was unique and a revolutionary concept up until recently in the U.S. Today in California, over 360,000 people are receiving monthly In-Home Supportive Services offered through California Department of Social Services. The IHSS Program helps pay for services such as housecleaning, meal preparation, laundry, grocery shopping, personal care services, accompaniment to medical appointments, and certain services prescribed by a medical provider that require assistance.