Living Independently

An Open Letter from ADAPT to the Disability Community on the 20th Anniversary of the Signing of the Americans with Disabilities Act

Sisters and Brothers in the Disability Community:

Defending Our Freedom ADAPT logo

As the 20th anniversary of the signing of the Americans with Disabilities Act draws near, we approach the milestone with mixed emotions.  Securing national civil rights legislation, protecting the rights of people with disabilities, was truly historic.  It is important that we recognize the incredible nature of this accomplishment and the hard work of those that made this happen, but 20 years after President George H. W. Bush signed this civil rights legislation into law and as our community is preparing for the celebrations, we pause in disappointment that the promise of freedom has still not reached our sisters and brothers in nursing facilities and other institutions.

Our sisters and brothers remain locked away, unseen and unheard.  For them, the act is just words on paper.  They are not given the opportunity to exercise their civil rights under this law because they still do not have the basic freedoms that other Americans enjoy.

As the Anniversary date draws closer, they may hear about the progress our community has made over the past 20 years, but knowing that you are protected against discrimination in employment means nothing when the hub of your life is a bedroom you share with a stranger.  Knowing that buildings and public accommodations are accessible means nothing when the facility staff won’t let you leave; and even having access to lifts on buses - as dear to our hearts as that is - means nothing when you cannot afford to go anywhere on the allowance that is left over after the institution has taken its share of your money.

When we gather together as a community, we must remember that our sisters and brothers in institutions will not be toasting those that authored or advocated for the Act.  They will not be celebrating independent living, either as a movement or personal achievement, and they certainly won’t share in the power or pride of the disability community.  For them, July 26th will be the same as every other day in the institution.

Recently, ADAPT has been criticized by some of the provider-based advocates in our community because we are publicly demanding that Speaker Pelosi sign onto the Community Choice Act and agree to eliminate the institutional bias once and for all.  They tell us that publicly questioning “our friends” is inappropriate.  We are told we should be grateful for the efforts that have been made so far, and that we must be patient because change takes time.

We will not apologize for our impatience.  We do this because our brothers and sisters have waited long enough for their freedom.  We cannot sit by, patiently and quietly waiting for our government to give our people the freedom which should be our birthright.

We had great hopes for President Obama and this Congress.  Many of us believed that his promise for change included the promise of freedom.  When President Obama was taking the oath of office with his hand on Lincoln’s bible, it seemed like fate was telling us that he would free our people.  When the President and Congress took up health care reform, we were sure that they would finally eliminate the institutional bias, and we hoped that this historic anniversary in the disability community would be celebrated with historic change.  Unfortunately, the President and Congress did not have the political will to make this happen.  While we recognize that some gains were made, unlike any other class of Americans, our freedom remains a state option.

It is, indeed, true that one of the tools we are using to help people leave institutions and move into the community is the Supreme Court’s Olmstead decision, which is based on the requirements of the ADA, and it is true that President Obama’s administration has demonstrated an unprecedented commitment to enforcing the Olmstead decision.  But such efforts are transitory.  We have seen, during the last 20 years, that new administrations have their own priorities, and although there may now be a commitment to enforce the Olmstead decision, the pendulum will ultimately swing back in the other direction.

We also know that the gains we may make in the courts are hard-fought, slow, and constantly subject to attack.  Even right now, as many in the disability community commemorate the ADA’s anniversary, the Attorney General in Connecticut is coordinating legal efforts by the states to fight against some of the recent gains we have made in court which will allow more of our people to live in freedom.  Ironically, the deadline for states to join the effort is just one day after the anniversary, July 27th.

Bruce Darling of ADAPT

In America, freedom shouldn’t ever be optional, but - in fact - for us it is. While federal Medicaid rules require states to pay for institutional placement, community-based alternatives are state options and continually subject to elimination in state budget cuts.  It is ironic that as we celebrate a civil rights victory that is 20 years old, our freedom is becoming even more precarious and the situation becoming more dire.  States, facing record budget shortfalls, are cutting the services that support community living options for seniors and persons with disabilities.  These budget cuts force people into unwanted placement, stealing from them much of what is most precious: their homes, their families and their freedom.

Some people have moved across the country to a different state to get supports and services to live outside of the institution.  There, they have been able to share in the promise of the ADA, but many people don’t know about the services available in other states or simply might not be able to make the journey on this modern underground railroad.

But as long as community services are only an option, those who have escaped to freedom cannot escape the fear.  No place is safe because their freedom can easily disappear at the whim of state policy makers.  They will be called upon to help solve their state’s budget crisis by sacrificing their freedom, home and lives.

We all need to recognize that through personal circumstance or state policy change any of us can lose our freedom.  No one in our community is exempt.  No one is safe.  No one in our community can afford to be comfortable, but it is also our hope that - from this discomfort - the disability community will be mobilized to take action and, together, we will build on a 20-year legacy to address this injustice.  Our movement isn’t about the civil rights for some of us; it is about the freedom of all of us.

We cannot wait any longer.  ADAPT asks you, during this ADA 20th anniversary celebration, to recommit your energy to ending the institutional bias during the next Congress.  The time is now to end the institutional bias and FREE OUR PEOPLE!

Sincerely,

The ADAPT Community

ADAPT, Around the country, System Change ADAPT, Add new tag

Randy Alexander of ADAPT

It didn’t start out as part of the new Health Care Reform Bill, but for years ADAPT has worked to end the Institutional bias in America’s Medicaid system. ADAPT activists across the nation are celebrating the Community First Choice Option that is part of the Health Care Reform Bill that Congress passed Sunday March 21.

Twenty years ago with the signing of the Americans with Disabilities Act, ADAPT activists began to work to end the Medicaid bias that supported facilities and institutions but failed to help someone to stay in their own home or live and work in the community. Early on ADAPT called to redirect 25 percent of Medicaid funding away from institutions for support at home. In 1996, when 90% of Medicaid was funneled into expensive nursing homes, ADAPT engineered Newt Gingrich, then the House Majority Leader to introduce the Community Attendant Services Act, CASA.

A few U.S. states understood the logic and cost savings of the idea and begin to offer more home and community based services through state waivers of the federal Medicaid requirements. Rather than channeling all the federal funding into the for-profit nursing home industry, some progressive states “waived” the institutional requirement and provided home and community based services that allowed people to stay at home at a much lower cost to the state.

ADAPT worked for national legislation and Sen. Tom Harkin introduced MiCASSA, the Medicaid Community Services and Supports Act, to finally give Americans a real choice to live in their own home. While many states inched into providing more waivers, the nursing home industry blocked the national legislation to hang on to as much of the public funding as possible. With a nursing home in every county in the US, the institutions, money and old-boy lobbyists were able to prevent Americans from having choices in long-term Medicaid.

But in 2003 following ADAPT’s Free Our People March from Philadelphia to Washington DC, the Queen Mary began to turn. States were offering waivers for about 30% of long-term Medicaid care, and state budgets were reflecting the savings. Congress adopted “Money Follows the Person” legislation in 2006 that took the funding section of MiCASSA and gave incentives for states to provide home and community options to expensive institutions.

Nadina LaSpina of ADAPT

ADAPT’s work is not done. Federal law that requires equality is just not enforced, mostly the 1999 Supreme Court Olmstead decision. This ruling reinforced the fact that inappropriate institutionalization was discrimination; a type of discrimination unique to people with disabilities.

ADAPT has begun the Defending Our Freedom Campaign to make the federal government responsible for enforcing our rights. The Defending Our Freedom also asks grassroots people with disabilities to document their struggles to secure home and community based services.

Defending our Freedom Blog.

Around the country, System Change ADAPT