Editor's Note: The NCIL Offices will be closed Monday, May 25th for Memorial Day. The NCIL Annual Conference begins the following week. In order for staff to have adequate time to prepare and host the Conference, the next edition of the Weekly Advocacy Monitor will be released June 15th, 2009. This Special Edition will feature a summary of the actvities of the Conference.
1) What’s Happening in the Nation’s Capital?
NCIL Welcomes New Executive Director Kelly Buckland!
Senate Finance Committee Holds Healthcare Hearing: Protesters Disrupt in Support of Single-Payer Healthcare
2) National News
Disability Human Rights Organizations Support House Resolution to Ratify UN Conventions
Newsweek Covers Neurodiversity!
Petition to End Abuse of Students with Disabilities
3) State News
Group Sues Wisconsin Hospital over Policy on Withholding Treatment from Patients with Disabilities
4) Announcements and Additional Resources
SNAP (Food Stamp Program) Update Webinar
NCIL Welcomes New Executive Director Kelly Buckland!
Past President Kelly Buckland began his tenure as Executive Director of the National Council on Independent Living today. The staff welcomes him wholeheartedly, as his leadership is certain to advance the organization and our Movement as a whole.
Kelly Buckland is a person with a disability who has been actively involved in disability issues since 1979. Over the past two and a half decades, he has worked closely with the Idaho State Legislature on issues affecting people with disabilities, including passage of the Personal Assistance Services Act and the Fathers and Mothers Independently Living with their Youth (FAMILY) Child Custody Laws. Kelly has testified before Congress several times on issues such as universal health care, Fair Housing, and appropriations for Centers for Independent Living. He has been closely involved with the direct-service and systemic change aspects of the Independent Living Movement. He has a long history of political activity in Idaho and ran for the State Senate in 1992 and the State House of Representatives in 1994. Kelly was most recently employed as the Executive Director of the Idaho State Independent Living Council.
We also bid a fond farewell to John Lancaster, our Fearless Leader since 2005, and staff member Justin Chappell. We owe them both a great deal of gratitude for their service to the Movement and the advancement of the rights of people with disabilities worldwide.
Senate Finance Committee Holds Healthcare Hearing: Protesters Disrupt in Support of Single-Payer Healthcare
On Tuesday, May 5th, Healthcare Policy Analyst Jason Beloungy attended the second of three roundtable discussions regarding healthcare reform, held by the U.S. Senate Committee on Finance. As Committee Chair Max Baucus (D-MT) brought the hearing to order, protesters began standing up one after the other and demanding that single-payer healthcare be a part of the reform. As soon as police escorted one protester out of the room, another would stand up, criticizing the committee for convening a panel of 15 experts and excluding witnesses who support creating a Medicare system for all Americans. About eight were led out of the hearing. The mini-protest was organized by Healthcare Now, Physicians for a National Health Program and Single Payer Action, all of whom support a single-payer, government-run health care system. After order was restored, the hearing was convened, and the large panel of healthcare experts gave testimony regarding the best way to provide coverage to all Americans.
The Panel included: Stuart H. Altman, Ph.D., Sol C. Chaikin Professor of National Health Policy, Heller School for Social Policy and Management, Brandeis University, Waltham, MA; Joseph R. Antos, Ph.D., Wilson H. Taylor Scholar in Health Care and Retirement Policy, American Enterprise Institute, Washington, DC; Katherine Baicker, Ph.D., Professor of Health Economics, Harvard School of Public Health, Cambridge, MA; Leonard Burman, Ph.D., Director, Tax Policy Center, Urban Institute, Washington, DC; Robert Greenstein, Ph.D., Executive Director, Center on Budget and Policy Priorities, Washington, DC; Jonathan Gruber, Ph.D., Professor of Economics, Massachusetts Institute of Technology, Cambridge, MA; Michael F. Jacobson, Ph.D., Executive Director, The Center for Science in the Public Interest, Washington, DC; James A. Klein, President, American Benefits Council, Washington, DC; Edward Kleinbard, Chief of Staff, Joint Committee on Taxation, Washington, DC; Gerald M. Shea, Assistant to the President for Governmental Affairs, AFL-CIO, Washington, DC; John Sheils, Senior Vice President, The Lewin Group, Falls Church, VA; Gail Wilensky, Ph.D., Senior Fellow, Project HOPE, Bethesda, MD; Steven Wojcik, Vice President of Public Policy, National Business Group on Health, Washington, DC.
The idea of the hearing was to get a variety of ideas on how to best provide coverage to all Americans. Many ideas were discussed, including a “Medicare-like” public plan that would be part of a health insurance exchange with private options. For Americans who didn’t qualify for a current benefit program like Medicaid or Medicare, they would be able to keep their current insurance or choose a plan out of the exchange. The health insurance industry was not supportive of this plan and felt that the government plan would be unfair competition that would eventually force out private companies. The insurance industry instead supported tighter regulations on themselves to stop such practices of discriminating based on gender, which typically leaves women paying more than men, and denial of coverage and variations in premium costs based on pre-existing conditions. Some panel members supported expanding public benefit programs, or modeling a new plan after Medicare or Medicaid. Those who supported a new plan like Medicaid praised the broad coverage that Medicaid provides, but strongly cautioned that the plan will not succeed if reimbursement rates are not increased. There is already a problem with providers accepting Medicaid and Medicare because of low reimbursement rates, and expanding those programs will only leave more people covered without a provider nearby or readily accessible. Committee Member Charles Schumer (D-NY) offered his proposal that a public plan option follow the same rules and have the same rates as private plans, as a way to make the competition fair and encourage providers to accept the insurance.
Finally, an issue that is most important to NCIL and its members is the inclusion of long-term care in health care reform. This discussion was only a small part of the three-hour hearing. There was no mention of the Community Choice Act or the CLASS Act. Much of the limited discussion centered around the lack of homecare providers for older adults, and how to make sure there was an adequate workforce. NCIL is disappointed that there was not more discussion about this issue, including ending the institutional bias, and giving people control and choice in their services. Further, NCIL would have liked some of the healthcare coverage debate to have included making medical offices and equipment accessible for everyone, ending the 2-year waiting period for Medicare, and the cultural competency training of doctors.
The NCIL Health Care and Personal Assistant Services committees have joined together and are preparing a comprehensive effort to get our issues in this debate before a final reform bill is drafted. This will require the efforts of all of us, especially those NCIL members who have a member of Congress on key committees. Keep checking your e-mail boxes in the next couple of weeks for updates and alerts.
For additional information, contact Healthcare Policy Analyst Jason Beloungy. He can be reached by phone at 202-207-0334, ext. 1008, or by e-mail at: Jason@ncil.org
Disability Human Rights Organizations Support House Resolution to Ratify UN Conventions
Two national disability rights organizations, the Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP) and the U.S. Network of Users and Survivors of Psychiatry (USNUSP) support H. Res. 416, which expresses the sense of the House of Representatives that the “United States should become an international human rights leader by ratifying and implementing certain core international conventions” and affirms the historic role of the United States in the development of global human rights standards.
“The time has come for the U.S. to cease the practice of exceptionalism when it comes to human rights. This resolution from the House of Representatives is a step in the right direction, and we will continue to advocate and organize for U.S. ratification of UN international treaties and accountability to, international human rights norms,” said Daniel Hazen, a co-coordinator of USNUSP, a grassroots organization seeking to advance the human rights and dignity of people with psychiatric disabilities in the U.S.
CHRUSP and USNUSP support U.S. ratification of all UN conventions and optional protocols, but are particularly focused on the UN Convention on the Rights of People with Disabilities (CRPD), which sets forth unprecedented protections for people with psychiatric disabilities beyond the standards currently articulated in the Americans with Disabilities Act (ADA). These include equal recognition as persons before the law (Article 12), in which users and survivors of psychiatry are entitled to full legal capacity with the option of supported decision-making should they request it. UN experts, including the Special Rapporteur on Torture, consider the controversial practice of involuntary psychiatric treatment to violate the CRPD.
Tina Minkowitz, Director of the Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP), an organization working for full legal capacity for all and an end to forced psychiatric interventions, said: "CRPD and its Optional Protocol (allowing individuals to complain about human rights violations) should be ratified without any reservations, understandings or declarations, to make the greatest commitment possible to the human rights of people with disabilities in the U.S. and abroad."
H.Res.416 is sponsored by Rep. John Lewis (D-GA). For a complete list of co-sponsors please visit www.thomas.gov.
Newsweek Covers Neurodiversity!
Source: Newsweek
Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."
The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.
I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist. Read More.
Petition to End Abuse of Students with Disabilities
Source: Ari Ne'eman
Take action to address the growing problem of abuse against students with disabilities in our public schools through the use of aversives, restraint and seclusion. Students with disabilities deserve to go to school without fear. Sign the petition.
Group Sues Wisconsin Hospital over Policy on Withholding Treatment from Patients with Disabilities
Source: Wisconsin State Journal
In a case that could have broad legal implications for when some patients are allowed to die, an advocacy group is alleging that doctors at UW Hospital broke the law by withholding treatment from two developmentally disabled patients with apparent cases of pneumonia.
The guardian of one patient, who survived, at first went along with and then later disagreed with the decision to withhold care, the lawsuit by Disability Rights Wisconsin alleges. The parents of the other patient, who died, pushed for the withdrawal of treatment, according to the group’s complaint filed Thursday in Dane County Circuit Court.
One medical ethicist said the case could help to clarify a difficult question in state law: How much power do families and guardians have to make medical decisions for vulnerable patients such as children and the developmentally disabled? Disability Rights contends state law prevents parents and guardians from withholding treatment from patients who can’t make that decision for themselves unless they are in a “persistent vegetative state,” a condition the group says did not apply to the two patients in the lawsuit.
But a spokeswoman for UW Hospital said the hospital acted in the best interests of both patients and tried to follow the wishes of their families. “What is at stake in this case is no less than patients’, parents’ and families’ ability to make private health care decisions in the best interests of the patient,” spokeswoman Lisa Brunette said in a statement.
Disability Rights is suing to change hospital practices and to recover the $4,700 it spent investigating the cases, plus legal costs. Attorney Mitch Hagopian said he worried some UW Hospital doctors may be too quick to suggest withdrawing treatment from a developmentally disabled person they perceive to have a low quality of life. “It’s a great medical institution. They provide great care to their patients,” Hagopian said. “All we want is for them to provide that same great care to developmentally disabled people who are not dying.”
Dr. Steven Leuthner, a bioethicist at the Medical College of Wisconsin, has written about one of the legal cases cited by Disability Rights in its lawsuit. Read More.
SNAP (Food Stamp Program) Update Webinar
Source: National Center for Benefits Outreach and Enrollment
Recent legislation has made important changes to the Supplemental Nutrition Assistance Program (SNAP -- formerly known as the Food Stamp Program). The National Center for Benefits Outreach and Enrollment will host a Webinar this month to discuss these changes and how they affect consumers.
This conference call/webinar will be offered at two different times:
Wednesday, May 20; 2:00-3:30 pm Eastern (Click here to register), and Tuesday, May 26; 2:00-3:30 pm Eastern (Click here to register). Please contact abctraining@ncoa.org if you need further assistance.
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May 18, 2009