ADAPT Outraged by Exclusion from Health Reform

ADAPT sent out the following press release in response to the administration's support of the CLASS Act. Comment below with your reaction to this weeks developments.  Is the Administration's support of the CLASS Act while neglecting the Community Choice Act a betrayal of our community and revelation of their underlying disregard for our low-income and impoverished brothers and sisters?  or is ADAPT overreacting to a good faith first step in the right direction as Congress and the Administration move the system toward home and community based services and independent living? 

You be the judge:

From Adapt (7/7/09):

For Immediate release:                                                                      

Obama Administration Continues Institutional Bias in Healthcare Reform

Washington, D.C.--- The nation’s largest grassroots disability rights organization, ADAPT, expressed outrage today at the Obama administration’s selective endorsement of  one piece of proposed long term care legislation while refusing to support a companion measure aimed at=0 Aeliminating the institutional bias in Medicaid for aging or disabled lower income people that Obama, with strong support from over 80 national disability and aging organizations, co-sponsored as a Senator.

July 6, Kathleen Sebelius, Secretary of Health and Human Services, sent a letter to Sen. Edward Kennedy, Chair of the Senate Health, Education, Labor and Pensions Committee, expressing President Obama’s support for Kennedy’s “CLASS Act,” which would allow middle class Americans to set aside money from their paychecks in anticipation of the expenses they will likely face for long-term services and supports as they age, or acquire a disability. After paying into the fund for at least 5 years, workers or their non-working spouses could draw on the fund for long-term services and assistance, either in a nursing home or in the community. Workers who wish could opt out of the program, an outcome more likely in tough economic times or in cases where low worker-wages barely cover individual or family survival expenses.

“Those of us with disabilities, who are aging, and who aren’t able to work are outraged that the President has issued public support for this primarily middle class legislation, and has completely ignored the companion legislation that would include lower income disabled and older people in reform of long term services and supports, and health care reform,” said Bob Kafka, Texas ADAPT Organizer. “It’s like we don’t exist!”

ADAPT and a multitude of other national disability and aging organizations in Washington have gone on record in support of Sen. Kennedy’s CLASS Act only if it is paired with a “fix” for Medicaid addressing lower income and non-working people, similar to provisions contained in the Community Choice Act (CCA). CCA inserts the concept of “personal choice” into the law, adding language that mandates states to pay for help in a person’s own home the same way the law mandates them to pay for nursing homes. Current law can force people with disabilities and who are aging into nursing homes in order to receive services that can just as easily be delivered in the community. Research has demonstrated that community-based assistance is almost always less expensive.

“When President Obama was a senator, he co-sponsored CCA,” said Dawn Russell, ADAPT Organizer from Denver Colorado , “and when he campaigned for the Presidency, he pledged to support CCA. But since he was elected, and we met with his people at the White House, they told us that he will not include long term services and supports in health care reform. When we heard that, we expressed our disappointment and anger in a peaceful protest outside the White House. The President responded by having us arrested, and there were very heavy fines levied against us. It feels like the President is trying to intimidate and silence us so we won’t speak up for people with disabilities, people with low incomes, and those who are aging who are at risk of being forced into nursing homes under the current law.”

Because the CLASS Act does not address the Medicaid “institutional bias,” people who use up the benefits they save under the act will still face having to move to nursing homes to keep getting assistance, unless they can afford to stay in their own homes because of other resources they have.

“When I voted last November, I was sure I was voting for a great man who would bring freedom to people with disabilities,” said Bruce Darling, ADAPT Organizer from New York. “Just as President Lincoln freed the slaves, I felt that President Obama would free those of us with disabilities from the continued threat of incarceration in a nursing homes and institutions. Now, I feel like a foo l, because this administration apparently cares nothing for us and has no respect for our freedom and our civil rights.” 

Comments

[Dee Alpert]

It appears that the Obama administration's understanding of, and sympathy with, civil rights movements stopped at the black civil rights movement in the '70's.

Obama's Secretary of Education, and now his nominee for USDOE's Office of Special Education and Rehabilitative Services, have poor-to-awful records re the humane, effective education of kids with disabilities and, more importantly, stopping the wave of school abusive use of restraints and seclusion on these kids.

Guess we in the disability rights community are last on line ... and will be the last to be served ... if ever.

Dee Alpert, Publisher
SpecialEducationMuckraker.com

[Marsha Rose Katz]

While CLASS itself is a good thing, it is important to understand that it's a measure that will not begin to show benefit until at least 5 years from when it is enacted. People have to pay in for 5 years before they can draw benefits, so if people begin to pay in immediately when the bill/law goes into effect, the first benefits won't be payable until at least 5 years into the future.

CCA would provide immediate relief to the hundreds of thousands of people currently in nursing homes and institutions, and those currently at risk of being forced into these settings.

So, if we are to talk about what might be a good "first step," isn't the best first step a combination of actions that would

1. Provide immediate relief to all the people waiting for basic freedom from institutional incarceration, and to those who deserve choice in where they receive their long term services and supports(i.e. CCA),

AND concurrently

2. Launch a program, for those workers able to participate, that will allow them to invest in the services they will likely need in the future as they age or acquire a disability (i.e. CLASS)

We should not have to choose.

However, if we are forced to make a choice, shouldn't we always come down on the side of basic civil rights, where everyone has the right and the ability to live freely in the community with the assistance we need?
We all want the opportunity to save for the future, but first we need have a present.

[Karla Lortz]

I think we must keep the pressure on the WH as the nursing home lobby obviously is.What are the national organizations, such as AAPD, doing to keep the pressure on?

[Patricia Sprofera]

Members of the disability, who voted for Barrack Obama, were fooled, along with so many other Americans. This should come as no surprise to any one.

[Amber Smock]

I think the title of this blog post is misleading. It's not ADAPT per se that is being excluded. It is poor, non-working people with disabilities and those in institutions WHO ARE BEING IGNORED by overprivileged bureaucrats and elected officials. Plenty of ADAPTers identify as such, and so do thousands of non-ADAPTers. Do you think our people really want to end up on the short stick of health care reform? Not to mention that from a Chicago standpoint, where I live, the institutional bias is racist as all get out, because it is documented that long term care for people of color is WAY worse than it is for white people. So not banning the institutional bias is just wrong on many, many levels.

[Mark Romoser]

And why are so many people with disabilities not working -- particularly those who use community supports? Why, it's because of institutional bias's cousin, benefits bias. Well over half of Americans with disabilities derive their income from government benefits. And the system is like the Roach Motel: people check in, but they don't check out -- not without a big hassle with bureaucracies such as SSA. Ticket to Work? Please. There is only one statewide Employment Network here -- DVR! And if you can't get out of the system and into the workplace, you can't get into CLASS.

[Nick Dupree]

AAPD has repeatedly stated that CLASS Act is supposed to be a compliment to CCA, right?

So why isn't AAPD asking WHERE'S THE CCA???

Nick

[Patrick Wm. Connally]

The President early on decided to appoint centerist and not community leaders as President Clinton did. Activits get things done and move for change, centerist as this administration keeps showing, just keep the same old same.

Senator Kennedy's handlers, like he did when he wanted us all call challenged, has decided his ego is bigger than the cause. It is the same reason Special Olympics, a segregated program continues untouched because no one wants to offend the Senator, even when the development department of Special Olympics keeps promoting Governor Swartzenegger who is killing community living in California.

The problem is Senator Kennedy and the people Obama appointed who want to return to a mythic 1960's for people challenged by Democratic Senator's who should retire because they are killing America's left.

[Kay Marcel]

Time will tell whether or not ADAPT has overreacted or not. I will withhold my disappointment in the Obama administration and any harsh judgement for now, but not for long. The Community Choice Act must be enacted and the President must provide the leadership he promised during the campaign.

[Ethan B. Ellis]

Why are all of you so surprised by Obama's failure to stand up for our issues in the face of any opposition? He's bought and paid for by Wall St., Silicon Valley and Hollywood.

We will only achieve real equality when we recognize that that requires the basic political and economic restructuring of this society and when we unite with others whom society now excludes to seize the power to make that happen.

No one gives up power voluntarily; we have to take it from them; that's the first rule of political science. Until we heed it, we are truly, 'handicapped', holding our caps out in our hands to catch the crumbs that those with power allow to fall from their tables.

[Patricia Sprofera]

The President, his cabinet, his appointees, his czars and his aides have not surprised me at all. I saw full well that he, and his associates, would gut the economy and the nation. The disability community is not even on his radar.

[John Smith]

this administration is such a big disappointment , at least with Bush we knew where we stood. this time we drank the koolade and now we're stuck

[Sherrie F.]

I'm not buying this piece meal of assumptions! Besides, being born with severe birth defects, I don't feel that persons with disabilities SHOULD fall into the standard "one size fits all" Healthcare Reform! Placing us in the "norm" has only allowed for us to continue to fall through the cracks of our systems that have NEVER been designed for our unique circumstances! How could they? I believe President Obama understands that! Furthermore, my understanding(and I've followed closely) is that the Community Choice Act and the CLASS Act are two seperate Acts that are designed for 2 entirely different needs groups of persons with disabilities! Therefore, it would be most wise to address our President with the specifics of an issue or ACT without trying to lump and attach it to another... ESPECIALLY Healthcare Reform!

I am a 44yr-old woman with severe disabilities from the onset of birth which has not allowed for me the ability to be placed in the workforce... However, I am NOT, nor have I been outraged towards President Obama by such assumptions, gestures, accusations and/or reasonings made of such towards President Obama for his ability; or lack of such(as seems gestured) with the issues that are unique, present and ongoing to our own special set of needs and circumstances. So PLEASE, as a disabled citizen do NOT lump me into one's own address of words as though they are representative of, or standing for my own; when in fact they are not!

This man, our President Obama has addressed and stood for me as a disabled citizen more than I had ever even hoped possible already! I now KNOW that I will be okay and am sorry if it's been missed by others of similiar circumstances!

[Thomas C. Weiss]

Barack Obama is nothing more than yet another in a string of politicians who continue to ignore the equal rights of citizens with disabilities in America. He used the sweet words of, 'Hope and Change,' and the kind hearts of People with Disabilities in order to obtain the office of the Presidency. Now that he is there - it is business as usual as far as Obama is concerned. Therefore, I can do nothing but treat Mr. Obama for what he is - a cheap politician.