I would like to thank Diane Coleman, assistant director of advocacy for Rochester, N.Y.-based Center for Disability Rights, for allowing me to repost this entry from her blog in its entirety. Coleman, a lawyer with a significant disability, is past-director of Progress CIL, which is located in the Chicago suburbs, and also the founder of Not Dead Yet.

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I’m no Pollyanna. I was with ADAPT in Denver in July, 1990, when activists from all over the country who succeeded in getting lifts-on-buses decided to turn our attention to establishing the civil right to freedom from nursing homes and institutions. Nineteen years later, we have made gains but still have a long way to go. Experience has made me a realist and I have my share of cynicism and doubt when policy makers give lip service to our goals.

Nevertheless, throughout the long political campaigns of the last two years, I have hoped for “change we can believe in.” Even before that, I was hopeful when Obama met with disability advocates in Chicago during his Senate campaign. He appeared to see us as a constituency. Later, Obama’s co-sponsorship of the Community Choice Act encouraged me and many others even more.

So last week produced two major disappointments. Chris Hilderbrant discussed the first disappointment in his piece about the White House meeting between ADAPT and Nancy-Ann DeParle, Obama’s health czar. DeParle directly and clearly rejected the notion that health care reform must include a reversal of the institutional bias in long term care services.

The second major disappointment came to light this week, but occurred last Thursday, April 30, three days after the White House meeting. On that day, the whitehouse.gov web site removed its statement endorsing the Community Choice Act, which said:

….And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution…

This was replaced by the statement:

…The President believes that more can be done to encourage states to shift more of their services away from institutions and into the community, which is both cost effective and humane.

For more details on the changes, see this side-by-side comparison, which activist/blogger Nick Dupree has located and posted a video blog about.

So the campaign-promised endorsement of a specific bipartisan bill, the Community Choice Act, has been replaced by a noncommittal and passive voice statement that “more can be done” to “encourage states to shift” from institutions to community services.

What about the CIVIL RIGHT that we have already won in the U.S. Supreme Court?!!!! What about the landmark ruling that our right to LIBERTY does not end when we need assistance in the activities of daily living? When Brown v. Board of Education called for school desegregation “with all deliberate speed,” we learned that justice can take a long time. We have seen the same delay in implementing Olmstead, but many of us hoped for change in the new administration.

In the search for explanations for this betrayal by the White House, I regret to report than those of us who fought the ADAPT battle in Illinois have some important information to share. I had hoped these facts were irrelevant, but can no longer hold onto that hope.

First, it is well established that Illinois is near the bottom among all states (48th or 49th) in supporting community based alternatives, especially for seniors and people with developmental disabilities.

But more importantly, Obama’s former campaign manager and current senior advisor, David Axelrod, served on the Board of an institutional provider, Misericordia, where his daughter resides. He wrote in a 2006 article:

Misericordia, which is supported by both state and private funding, is a godsend for my daughter and its 550 other residents. Yet, it is defined as an “institution,” and, as such, has been targeted for closure by well-meaning but misguided advocates who insist that group homes in the community are the only acceptable option for people with disabilities.

Their ardor is fueled by the specter of Dickensonian institutions, to which people with disabilities have been sent, warehoused and forgotten. And such institutions should be a thing of the past.

But these failures should not be used as leverage to reduce or eliminate state funding for success stories like Misericordia, denying that option to those who want and need it. That was never the intent of the U.S. Supreme Court’s 1999 landmark Olmstead decision, so often cited in the movement toward group homes. The clear intent of Olmstead was to prevent the forced institutionalization of people with disabilities, not to limit their choices. (Don’t shut down facility that opens a future for disabled, David Axelrod Special to The Chicago Sun-Times, January 6, 2006, Page: 33 Section: Editorials)

Though, in point of fact, Misericordia was never “targeted for closure” by advocates, because we were too busy targeting Illinois’ eleven state run institutions, many would see Mr. Axelrod’s comments as reasonable.

And there’s more. For years, Misericordia was a key opponent to Olmstead implementation bills put forward by the centers for independent living in Illinois. And when the federally funded protection and advocacy system, along with Access Living, the state’s largest center for independent living, brought an Olmstead lawsuit on behalf of nine residents of other institutions in Illinois, Misericordia and the nursing home industry group attempted to legally intervene in the case. They asserted that enforcement of the civil rights of the nine plaintiffs might negatively impact the rights of other institutional residents. Fortunately, the federal court rejected this argument and denied them legal status to intervene.

But in our current struggle with the White House, seniors and people with disabilities don’t have a federal court to champion our civil right to community choice, or shield us from David Axelrod’s powerful influence, or denounce Illinois’ abysmal history of institutional bias that seems to have moved to Washington, D.C.

So all I can say is “thank you” to the ninety-one people with disabilities and allies arrested at the White House on April 27, 2009. Just as the Civil Rights Movement had to continue marches and civil disobedience after Brown v. Board of Education, the struggle of people with disabilities, old and young, for freedom has been advanced but not resolved by the U.S. Supreme Court. The Court’s affirmation of our civil rights has taken us to the streets as well. My new hope is that the disability rights movement will grow as the Civil Rights Movement grew, until the inherent justice of our cause cannot be denied, not even by the White House senior advisor, not even by the president.

Were would my child be if we did not have Misericordia? He has needed 24-7 nursing care since his birth - Misericordia is not an institution rather a wonderful home that respects and assists all its residents with disabilities according to individual needs. I suggest you visit our facility and see how wonderful Misericordia really is.

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