500 people with disabilities chain themselves to white house fence

I received a press release this morning from ADAPT, a network of grassroots disability-rights activists.

Although right now ADAPT is focusing on health-care reform, they are a civil rights and human rights organization, fighting for the rights and dignity of people with disabilities. The members of ADAPT are committed activists who use every means available to them, including civil disobedience.

For many years, their struggle has centered on health-insurance reform. In the US, in many states Medicaid will cover the cost of keeping a person in a nursing home, but will not pay for long-term personal attendants. Often, people with disabilities who could live in their own homes and attend school or work, if they had a personal attendant, are forced to live in nursing homes, because of the disparity in coverage.

This includes children and teenagers, forced to grow up in institutions because of this ridiculous rule. And it is ridiculous: personal attendant care actually would be less expensive!

This morning's press release:

91 Arrested When ADAPT Told Obama Administration Won't Support Inclusion of Long Term Services in Health Care Reform

Ten members of ADAPT met with Obama Administration officials in the White House today, and came away disappointed at the lack of commitment from the administration on inclusion of long term services and supports in health care reform. The administration stated that its only commitment currently is to extend insurance to the people who are uninsured, and that the people in nursing homes and institutions would need to continue to wait until an unspecified time in the future when it is proven that the health care reform worked.

Angered by that response, 500 ADAPT members immediately stretched out along the White House fence, using handcuffs and chains to secure themselves. The Capitol Police ultimately arrested 91 people.

"This is unequivocally a civil rights issue, and we thought we had a civil rights president," said Bruce Darling, ADAPT Organizer from Rochester, New York. "He took the oath of office on the Lincoln bible, and has spoken repeatedly about inclusion and integration. But after today, it seems clear that inclusion doesn't apply to us . . . to the thousands of people trapped for years behind institution and nursing home walls and those of us who are aging with nursing homes looming in our futures. Instead of the promised "change" we are just getting more of the same old thing."

Obama officials in the one hour meeting with ADAPT included Nancy-Ann De Parle, Counselor to the President and Director of the White House Office of Health Reform, aka the President's Health Care Czar; Jeff Crowley, Director of Office of National AIDS Policy and an advisor on the administration’s development of disability policies; Henry Claypool, Director of the Office of Disability in Health and Human Services (HHS); and Mike Hash, coordinator of the HHS-White House reform efforts.

"My heart is broken," said Dawn Russell, ADAPT organizer in Denver, Colorado. "Throughout the Presidential campaign, ADAPT worked hard to educate the Obama campaign. We came to believe in the Obama promise of "change," and we really believed that President Obama was the person who really would "free our people" from being imprisoned in nursing homes and other institutions. Untold numbers of people have died or been abused waiting for their freedom, and we just got told we aren't important enough and so we have to keep waiting."

ADAPT will be making visits to Congress during the week, seeking more co-sponsors for the Community Choice Act, legislation which would give older and disabled Americans the choice to live in their own homes and communities with the services and supports they need. Current Medicaid policy forces people into nursing homes and other institutions in order to get the assistance they need, despite the fact that both the aging and disabled communities have consistently indicated they prefer home and community based services to the generally higher cost institutional services that rob them of control of their lives.

"The President can give millions more people health insurance, but if health care reform doesn't include long term services and supports, then all the health care in the world won't keep those people from being forced into nursing homes against their will," said Linda Anthony, ADAPT Organizer from Pennsylvania.

More from ADAPT on the Community Choice Act:

For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.

Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It's time for Real Choice.

The Community Choice Act provides an alternative and will fundamentally change our long term care system and the 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 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.

ADAPT has been fighting for the rights of people with disabilities for 25 years. And "people with disabilities" could be all of us. It's the only minority that anyone can join. A slip in the shower, a car accident, a stroke, and "they" are suddenly "me".