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Archive for April, 2012

NEW: Administration for Community Living

April 16th, 2012

HHS Announces a Reorganization

Tim Wheat and Henry Claypool

Tim Wheat and Henry Claypool

Today the US Department of Health and Human Services announced the reorganization of the Administration on Aging, Office on Disability and Administration on Developmental Disabilities into the Administration for Community Living.

Henry Claypool, a former staff member of the Center for People with Disabilities, gave a brief history of how HHS came to create the ACL. He said the US Supreme Court 1999 Olmstead ruling, the Real Choice Systems Grants, Money Follows the Person legislation in 2005 and the Obama Administration’s Year of Community Living were all forerunners of this consolidated federal agency.

Putting people in institutions is the way that federal programs served people with disabilities when Medicaid began. Today the remains of this institutional bias are still a significant part of our system and are the most costly part of Medicaid. Claypool tells a history of federal initiatives beginning with Olmstead that are working to reverse the institutional bias and provide Americans with choice in how we get Medicaid Long-Term Care Services.

Claypool said he will still advise on disability issues but he will focus on ACL and move the current policy office into the new agency. Kathy Greenlee, the Assistant Secretary for Aging will head the ACL while keeping some of her current duties with Claypool as chief deputy.

Following the announcement Claypool, Greenlee and Sharon Lewis of the Developmental Disabilities Administration took questions. Unfortunately, the first question was from an agent of the Voices of the Retarded who mischaracterized institutional incarceration as an Olmstead “choice.” The HHS staff did not cut the caller off, but all suggested they would continue to advocate for people who were institionalized.
Olmstead simply does not make the choice of an institution a Constitutional Right. The Supreme Court upheld the ADA concept that “inappropriate institutionalization is discrimination.” Although all states have Medicaid institutional programs that people may choose, it is our right as American citizens to live in our own homes and in our communities. We do not have a right to be institutionalized.

It was frustrating to hear the VOR misinformation on the national announcement call; but the creation of the ACL seems like a good move to end the segregation of people with disabilities and to end the institutional bias.

Tim Wheat
Community Organizer
CPWD

Around Colorado, Around the country , ,

Disability Pride

April 15th, 2012

The Conference on World Affairs takes on the topic of pity.

Rick Guidotti

Rick Guidotti

The Conference on World Affairs is not an action related conference with policy-makers, officials and agents; but it is more of a contemplative conference that simply gives attendees the chance to think about issues. This year I was excited to see the topic “No Pity: The Evolution of Disability Pride,” as a CWA session on Wednesday.

Many people in the disability community are very familiar with committees, task forces, boards and work groups that aim to get things done but are short on action. It may be hard to attend a conference that professes contemplation over action. Like most people I cannot help but think that my local community needs to be more committed to action; and my state, the nation and the world to have more accomplishment and less pondering. As a matter of fact, I am a strong believer in the “do-it, fix it” philosophy over contemplative action, because I strongly feel that often our thinking about all aspects before we act can stagnate any action.

However, a topic like Disability Pride can use more thought. The CWA panel included Rick Guidotti, a fashion photographer, Henry Butler a musician and Michael Bérubé an author and professor. Cindy Donahue was the moderator. Overall, I was impressed the topic of disability pride made it on the program and I liked the perspectives of the panel.

Rick Guidotti told of his experience as a photographer in a foreign rural village where he was told that photography was taboo. Because of the warning, he believed he was just going to speak to the villagers about pride and images of disability; but before he could finish speaking, a mother held up her child and said: “Show the world the beauty of my son!”

Henry Butler noticed from his experience working with children at a music camp that everyone is a vehicle of creativity. He explained that pity was actually a reflection of how a person feels about themselves rather than a characteristic of the person being pitied.

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Michael Bérubé

Michael Bérubé explained in his opening comments how the Disability Rights movement is largely unknown by the typical American. He compared our movement to the Gay Rights Movement and asked when there would be a chic television show called “Crip-Eye for the AB Guy;” in the same fashionable trendy style as “Queer-Eye for the Straight Guy.” His main point was that although Disability Pride was evident in some ways, there was still significant stigmatization of disability in the community.

In the discussion among the panelists they all developed the stigma as a theme that opposed the progress of Disability Pride. Humor was one method that society has for reducing stigma and Bérubé suggested that disability comedy would help to reduce social stigmas.

One question from the audience was about access for people who are deaf. The questioner pointed out that the CWA would cost her $500 a day for access with American Sign Language Interpreters. She also said that disability groups, many who are non-profits do not readily pay for access to their events.

The panel was united that the CWA should provide interpreters at all sessions. But they explained some of the limitations of the Americans with Disabilities Act. Michael Bérubé said that at the time, during the administration of George H.W. Bush, one aspect of the ADA to make it more bipartisan was the goal to “get people off government assistance.” This aspect has made paying for access problematic over the years and has left many people out including the Deaf.

Another obvious weakness of the ADA is that it was not followed by universal healthcare. This unbalanced governmental program draws a line between healthy workers and non-workers rather than providing ways for everyone to be involved in the workforce. Social Security defines disability as being unable to work, while the ADA defines disability functionally and requires reasonable accommodations.

Guidotti’s advice was to transition anger into advocacy and persistence. He said when you find yourself settling everyday you must be the one to tell yourself to stop compromising. “You stop and say: ‘I am not going to compromise.’”

The panelists used another question to deal with the r-word. Many in the disability community had opposed the movie Tropic Thunder because of the use of the r-word in a satirical format. Bérubé made the case that the movie had worked with the NAACP to assure that the African-American community would not reject a white actor in blackface. But for the disability community the joke was not good and the satire was not clear.

“Retarded is back in vogue, the Black Eyed Peas big hit ‘Let’s Get It Started;’ was originally titled ‘Let’s Get Retarded,’” Michael Bérubé, a professor at Penn State said. “While ‘retarded’ can be fashionable, the word ‘retard’ is personal.”

There were also topics at the CWA on PTSD, Alzheimers and Dementia that related to disability; but I did not have a chance to attend those conversations. I attended sessions on healthcare, social media, homelessness and addiction that can relate to disability and I like the chance to consider the many ideas on these topics.

But as I return to meetings and work-groups that get together to get things done, I hope that everybody I work with will take time to think about the “big picture” of what we are ultimately trying to do. I hope that our determining the best course of action to take will not lead to an endless loop of contemplation, but we will balance the thought with thoughtful action to really make a difference for people with disabilities in our community.

Tim Wheat
Community Organizer
CPWD

Around Colorado, Independent Living