1) What’s Happening in the Nation’s Capital?
Healthcare Reform Update
CLASS Act Survives Mark-Up; Still Part of Healthcare Reform
2) National News
OUTRAGEOUS! Peter Singer Enters Healthcare Debate: Our Lives are Half as Valuable, Cure or Kill Mentality is Philosophically Sound by Our Own Standards
HELP Subcommittee Holds WIA Hearing
Sotomayor Confirmation Hearing Began Last Week; Full Senate Vote as Early as This Week
Hate Crimes Bill Nears Passage
3) State News
NCIL Members’ Contributions Help Save Iowa Center
4) Announcements and Additional Resources
Stories Needed from Members About ARRA Experience with RSA
Share Your Voting Stories: What Is Going On Where You Live?
Healthcare Reform Update
The healthcare reform process is being described as a soap opera, with its wild ups and downs. One minute it looks like the effort may fail, and the next it’s moving rapidly through committees. A lot has been accomplished, but a lot of questions need answers. The hard part has yet to come: how to pay for reform without adding new taxes to low- and middle-income Americans while creating an adequate benefits package.
The House Ways and Means Committee and Education and Labor Committee have both finished their mark-ups of the Tri-Committee Healthcare reform bill, and passed their bills out of Committee. Education and Labor will finish next week. There are now three versions of the 1,000+ page bill, and once all three have passed out of their Committees, the differences will have to be worked out.
Some of the positives that we have seen so far in the HELP and House versions of healthcare reform include:
- expanded Medical Assistance eligibility to individual adults without children,
- subsidies to individuals and families to assist them to purchase health insurance in the proposed “healthcare exchange”,
- newly added language in one of the House bills that likely mandates Durable Medical Equipment as a basic benefit of private plans in the health insurance exchange,
- a public insurance program that will be a new choice of coverage for people in areas with limited options,
- the language from the promoting wellness legislation that requires the Access Board to develop accessibility standards for medical and examination equipment, and the removal of the discrimination of people with pre-existing conditions in health insurance.
NCIL is still waiting to see language that ends the institutional bias in Medicaid (the language in the CCA) and language to end the two year wait for Medicare. We are also working to include the CLASS Act in the House bill (although it was an introduced amendment in one of the committees). NCIL is impressed of the scope of the changes being introduced, but still pushes on to make sure some key reforms just mentioned are not left out.
In Senate Finance, they are working away at cutting provisions to bring the cost down under 1 trillion dollars over the next ten years. This is never a good thing when what you wanted wasn’t in the original draft of proposals to begin with. This is due in large part to the rejection of the idea to tax healthcare benefits. Organized labor was influential in this, and the President has consistently opposed it. This left a 300 billion dollar gap that had to be filled by cuts, instead of “revenue raiser” or what we know more commonly as taxes. Just as a reminder, the Senate Finance Committee is the committee with the ability to draft language that would finally end the institutional bias in Medical Assistance through the language of the Community Choice Act.
In the Senate Health, Education, Labor and Pensions Committee, they finished the mark-up and passed their bill out the Committee. See the update about the CLASS Act below.
One final point about the reform process is that regardless of what committee adds provisions we like or do not like, the conferencing of committees in each chamber is a chance to create a complete bill for that respective chamber. It could have a good result where good things are added from each Committee’s “marked-up” bill, or it could be the opposite, and good things from one version are removed for the final version. This happens again later after each bill passes its respective chamber and the two bills have to be the same to reach the President’s desk. The House and the Senate versions have to be one bill for the President to sign.
A lot is happening. A lot can and will change. We still have a lot of work to do here in DC and throughout the country.
CLASS Act Survives Mark-Up; Still Part of Healthcare Reform
On July 7th, the Senate Health, Education, Labor and Pensions (HELP) Committee tackled long-term care reform as they marked-up the CLASS Act section of their healthcare reform legislation. NCIL Executive Director Kelly Buckland, and Policy Analyst Jason Beloungy, attended the hearing, as did many other advocates and lobbyists. The hearing room in the Russell Senate Building was full as the Committee talked about the bill and tackled how this new long-term care insurance option can be solvent yet affordable, while offering a cash benefit that can make a difference. This fundamental issue came to the front of the debate when Republican Senator Judd Gregg expressed his dissatisfaction with the CLASS Act because it was, as he felt, not designed for solvency after the first ten years. Senator Gregg cited the Congressional Budget Office (CBO) report that showed the program with a cost savings of 58 BILLION dollars in the first ten years of the program, but if actions by the Secretary of Health and Human Services were not taken to adjust benefits and premiums, the program would begin to go in the red. Senator Gregg also cited a study done by another organization where the deficit from the CLASS Act could reach $2 Trillion dollars in 75 years. While the legislation clearly gives the Secretary the authority to make premium and benefit adjustments to keep the program in the black after the first ten years, Senator Gregg wanted the premiums and benefits set from the beginning to ensure solvency for 75 years. Senator Dodd (D-CT), who is acting as Chair of the Committee in lieu of Senator Kennedy, felt that the legislation as it was written made the program solvent for the next 75 years.
While there was disagreement amongst the Committee members about whether or not the CLASS Act would remain solvent as it was written, there was an agreement that members would accept the CLASS Act and offer no other amendments if the amendment by Senator Gregg was accepted. The amendment was offered and accepted and the CLASS Act was approved by the Committee. The next step is to merge the HELP Committee bill with the Finance bill. This will happen later in July or August, once Finance releases and marks up their bill. It is felt that since this bill offers saving of $58 billion dollars in ten years, and 2 billion of that in Medicaid savings, the bill will likely be a part of the version that goes to the Senate floor.
OUTRAGEOUS! Peter Singer Enters Healthcare Debate: Our Lives are Half as Valuable, Cure or Kill Mentality is Philosophically Sound by Our Own Standards
Peter Singer, Professor of Bioethics at Princeton University and outspoken proponent of eugenics, has entered the healthcare debate with this outrageous attack on the disability community, published in this Sunday’s edition of the New York Times, along with several other newspapers. He argues that healthcare rationing is the only feasible way to achieve universal healthcare and that every life has a value – in dollars – attached to it. It’s no surprise that the value he places on the lives of people with disabilities turns out to be exactly half that of others’.
Singer also states, “This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword… Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.” These arguments are not only deeply offensive, but also philosophically unsound. Dr. Singer has become so entrenched in his bias against our community that he is no longer able to carry out his duty as a philosopher to support his arguments with reason. It is our duty as a community to correct the wrong that Singer has caused, and to vigorously debate his claims. Get instructions on how to send a letter to the editor of the Times.
Why We Must Ration Health Care, by Peter Singer (excerpted)
"Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.
This is the basis of the quality-adjusted life-year, or QALY, a unit designed to enable us to compare the benefits achieved by different forms of health care. The QALY has been used by economists working in health care for more than 30 years to compare the cost-effectiveness of a wide variety of medical procedures and, in some countries, as part of the process of deciding which medical treatments will be paid for with public money. If a reformed U.S. health care system explicitly accepted rationing, as I have argued it should, QALYs could play a similar role in the U.S.
Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.
This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition." Read the entire article.
HELP Subcommittee Holds WIA Hearing
On July 16th, one day after the Senate Health, Education, Labor and Pensions Committee finished it’s mark-up of the healthcare legislation, the Subcommittee on Employment and Workplace Safety convened a hearing to discuss the re-authorization of the Workforce Investment Act (WIA). NCIL Executive Director, Kelly Buckland, and NCIL Policy Analyst, Jason Beloungy attended the hearing. The purpose of the hearing was to talk about the education and employment aspects of WIA. There were two panels for the hearing. The first panel included the Honorable Jane Oates, Assistant Secretary of Labor, Employment and Training Administration and The Honorable Martha Kanter, Under Secretary of the U.S. Department of Education. The panelists talked about the need for improvements to job centers to better serve persons with disabilities. The ranking member of the subcommittee, Johnny Isakson of Georgia raised concerns that NCIL has advocated in the past. He asked the Assistant Secretary how physical and programmatic access to one-stops can be improved. This is exactly the kind of advocacy that is needed and NCIL thanks the Senator from Georgia.
Later in the hearing, there was a second panel of several guests. William Kiernan of the Institute for Community Inclusion of Boston talked about employment and unemployment data on people with disabilities, and was clear in pointing out that even in good economic times, the employment rates of people with disabilities is below that of persons without disabilities, and that the impact of a bad economy is felt even more. Senator Isakson again championed employment for people with disabilities when he asked Mr. Kiernan about how employment and unemployment figures affect the national averages. NCIL will continue to track the movement of the reauthorization of WIA, and keep members informed and engaged in this matter.
Sotomayor Confirmation Hearing Began Last Week; Full Senate Vote as Early as This Week
Despite all of the work happening on healthcare reform, Senators who sit on the Senate Judiciary Committee began the process of confirming President Obama’s choice for the next Justice of the Supreme Court, Judge Sonia Sotomayor. NCIL has publically endorsed the confirmation of Judge Sotomayor. The confirmation hearing is expected to last much of this week. While NCIL expects Judge Sotomayor to be approved by the Committee and ultimately confirmed by the entire Senate, NCIL continues to urge its members to call both of their U.S. Senators and tell them to vote to confirm Judge Sotomayor. If you have not done so, please take some time this week to call your Senators.
Hate Crimes Bill Nears Passage
Source: Politico, by Alex Isenstadt
Hate crimes legislation that would expand protections for those attacked because of sexual orientation [and disability] is poised to become law after several years of failed efforts to push the proposal past the Senate.
Senators, in a 63-28 vote, approved attaching the Matthew Shepard Hate Crimes Act as an amendment to the must-pass defense appropriations bill over objections from Republicans, who argued that the legislation should be considered as a stand-alone bill.
The defense bill still has to come before a Senate vote and a House-Senate conference, but Republicans concede that there is little they can do to stop the legislation from moving forward.
“There are more Democrats in conference than Republicans,” said Don Stewart, a spokesman for Senate Minority Leader Mitch McConnell (R-KY.). “Clearly, there are a few more hurdles before the amendment reaches the president’s desk, but its prospects for becoming law this year are very good,” said Allison Herwitt, legislative director for the Human Rights Campaign, an organization that is backing the legislation.
NCIL Members’ Contributions Help Save Iowa Center
Dear Friends and Colleagues of Independent Living,
It has been a little over a year since the Floods of 2008 wiped out the office of the Center for Independent Living in Waterloo, Iowa. I wanted to send out a brief update to everyone on what has happened with that Center.
Thanks to the National Council on Independent Living (NCIL) who gave the Waterloo CIL $14,000 in NCIL disaster relief funds, the CIL was able to stay in operation during and after the flood hit. I want you all to know that they finally received their FEMA funds, and have returned the $14,000 back to NCIL to replenish the NCIL Disaster Relief Fund!
The Center has relocated to a new office that is much better than the old one. They have been able to use their FEMA reimbursement to replace what was lost in the flood, which was basically everything in the office. They have also changed their name from the Black Hawk Center for Independent Living to the Northeast Iowa Center for Independent Living.
A huge thank you to all those who offered in-kind and financial assistance and words of encouragement! While the CIL did not take most people up on their offer for financial assistance, they very much appreciated the outpouring of support from across the country. Thanks everyone!
Dawn E. Francis, Executive Director, Iowa Statewide Independent Living Council
Contribute to the NCIL Disaster Relief Fund.
Stories Needed from Members About ARRA Experience with RSA
Earlier this month, NCIL sent out an alert to help members prepare for their upcoming meetings with RSA about their plans to use ARRA Part C dollars. In that alert, NCIL asked members to submit their stories to NCIL to post on the website. NCIL has received several verbal accounts, and one written account. NCIL will get the link up this week, and will post that write-up, and others as they come in. Please take some time to write about your experience with this process. Talk about the following:
- A general account of what happened
- What your state did to prepare
- What you could have done differently
- Recommendations to other states as they prepare
Please send your write-up to Jason Beloungy. His e-mail is jason@ncil.org. If you have questions, you can e-mail Jason or call him at 1-202-207-0334 (Toll-Free: 1-877-525-3400), ext. 1008.
Share Your Voting Stories: What Is Going On Where You Live?
To maximize the intended purpose of the Help America Vote Act (HAVA) the National Council on Independent Living (NCIL) Voting Rights Working Group wants to know what is going on in your community or state to get people with disabilities involved in the voting process. Such examples would be registering to vote, being comfortable with voting machines, and by volunteering as poll workers. We are also looking for stories about individual voting experiences while trying to use the accessible voting system. When we get your stories, we will reprint your experiences in anticipation that it will act as a catalyst to help others to get started to maximize voting access and participation by Americans with Disabilities. We will also use these testimonials to educate our Congressional leaders of the many barriers that still thwart millions of our brothers and sisters with disabilities from fully participating within the voting process.
Please submit your stories to Jason@ncil.org. Please feel free to share this request widely.
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July 20, 2009