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The Council for Disability Rights |
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October 2006
Unfinished Budget Business Control of the nation's purse strings is one of Congress's greatest powers and, as such, a core responsibility of lawmakers. But how can a serious obligation compete with political expediency? The new budget year, 2007, starts today. But Congress left town last week without having passed the spending bills needed to pay for about 20 percent of the federal government, basically everything except the military and homeland security, and automatic payments like Social Security and interest on the national debt. Republican legislators could not agree among themselves, let alone with the Democratic minority, on spending levels for matters as vital as education, diplomacy, environmental protection, public transportation and scientific research. Rather than make choices and leave a record for voters to assess, they fled, promising to act after the election. For now, departments and programs that Congress has not gotten around to funding will operate at last year's level, or somewhat below. But fallback funding will not necessarily prevent hardship. Take the State Children's Health Insurance Program, paid for by the states and the federal government to insure four million low-income children. At least 17 states are entering the new budget year without enough money, jeopardizing coverage for 600,000 children. It's appalling that Congress did not act to avert this, especially since the Census Bureau recently reported that the percentage of uninsured children rose last year for the first time since 1998. Appalling, but not surprising. Congressional Republicans rammed through spending cuts in domestic programs last February, most of them in programs for low-income Americans. The ostensible purpose of the cuts was deficit reduction. But three months later, in May, they worsened the deficit by slashing taxes, which will mostly benefit wealthy households. On top of that, they tried repeatedly this year to gut the estate tax, which would only have benefited America's richest families. It's impossible to say what will happen in the lame duck session, or beyond. But if the future Congress bears a strong resemblance to this one, it will not bode well for budget responsibility or basic fairness. Source: The New York Times, 10/1/06 Bipartisan Legislation Introduced to Restore ADA Protections WASHINGTON, D.C. — House Judiciary Committee Chairman F. James Sensenbrenner, Jr. (R-WI) and House Minority Whip Steny H. Hoyer (D-MD) today introduced bipartisan legislation that would restore protections for disabled Americans under the Americans with Disabilities Act of 1990 (ADA). H.R. 6258 is titled the "Americans with Disabilities Act Restoration Act of 2006." Chairman Sensenbrenner stated, "The landmark Americans with Disabilities Act has helped ensure American citizens no longer live in isolation but live as independent, self sufficient members of our communities. In recent years, however, the Supreme Court has slowly chipped away at the broad protections of the ADA and has created a new set of barriers for disabled Americans. This bipartisan legislation will enable disabled Americans utilizing the ADA to focus on the discrimination that they have experienced rather than having to first prove that they fall within the scope of the ADA's protection. With this bill, the ADA's 'clear and comprehensive national mandate for the elimination of discrimination on the basis of disability' will be properly restored and the ADA can rightfully reclaim its place among our Nation's civil rights laws." Congressman Hoyer said: "As the lead Democratic sponsor of the ADA in the House, I harbored no illusions that this legislation would topple centuries of prejudice overnight - nor that we could legislate that prejudice out of existence. Over the last 16 years, this landmark law has ushered in significant change. However, the promise of the ADA remains unfulfilled. The Supreme Court's interpretations of this historic law have been largely inconsistent with the original intent of Congress and President George H.W. Bush in enacting the ADA. For example, people with diabetes, heart conditions and cancer have had their ADA claims kicked out of court because, with improvements in medication, they are considered 'too functional' to be considered 'disabled.' This is not what Congress intended when it passed the ADA. We intended the law to be broadly - not narrowly - interpreted. The point of the law is not disability; the point is discrimination. I am pleased to join Chairman Sensenbrenner in introducing this legislation, which will help restore the original intent of the ADA." "Americans with Disabilities Act Restoration Act" Background Replacing "against an individual with a disability" with "on the basis of a disability" harmonizes the ADA with the Civil Rights Act of 1964 and other civil rights laws that prohibit discrimination "on the basis of race, color, religion, national origin, and sex." Prohibiting discrimination "on the basis of a disability" will enable individuals utilizing the ADA to focus on the discrimination that they have experienced rather than having to prove that they fall within the intended scope of the ADA. This phrase presumes that an individual is a member of the protected class if they are disabled, which the current language — "against an individual with a disability" — does not. Contacts:
Rail~Volution Chicago 2006 from November 5 to 8 Transit-oriented development from soup to nuts, for novices and veterans. Chicago is proud to be the host the 12th annual Rail~Volution from November 5th through 8th at the Marriott Magnificent Mile in Downtown Chicago. More than just a conference, Rail~Volution is the annual gathering of the nation's leaders of the movement to create livable communities by linking transit and development projects. Join more than 1,500 civic, business and government leaders for seminars and guided field tours led by experts on creating great communities. Speakers
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Source: Peter Skosey, Metropolitan Planning Council, 10/5/06 P&A Authority to investigate Abuse and Neglect in Schools Decisions affirm federally mandated access to protect rights of people with disabilities WASHINGTON, DC — Last week, unanimous decisions by two separate US Circuit Courts reaffirmed the authority of Congressionally-mandated protection and advocacy systems to fully investigate abuse and neglect in public schools. "We hope these cases will finally put to rest questions of P&A access authority in investigating cases of abuse and neglect in whatever setting they may occur," said Curt Decker, executive director of the National Disability Rights Network (NDRN). "It has always been Congress' intent that P&A's have broad investigatory authority; anything that would thwart that access is unacceptable." More than 30 years ago, Congress created the Protection and Advocacy (P&A) System with agencies in every state and territory to investigate abuse and neglect and protect the rights of individuals with disabilities. In 2000, Congress expanded the authority of P&A's to protect the rights of individuals with mental illness in non-residential settings, including public day schools. Despite this clear Congressional mandate, the Hartford Transitional Learning Academy (HTLA) in Connecticut and the Department of Public Instruction in Wisconsin tried to block P&A investigations. In the first case to be decided, the Seventh Circuit, covering Wisconsin, Illinois, and Indiana, vacated a lower court ruling that would have allowed DPI to withhold from the Wisconsin P&A, Disability Rights Wisconsin (DRW), an investigation report containing the names of elementary students held in a "timeout" room. In the 19-page decision, the Seventh Circuit found that "to withhold the records is to give DPI the last word over the abuse and neglect of the disabled or mentally ill. This clearly defeats the purpose of DRW and the P&A statutes." Similarly, the Second Circuit, covering Connecticut, New York, and Vermont, affirmed a permanent injunction Friday, allowing the Connecticut Office of Protection and Advocacy (OPA) for Persons with Disabilities access to students and parental contact information at the Hartford Transitional Learning Academy (HTLA). Conflict over OPA's access to HTLA arose in February 2004, when the agency launched an investigation into reports from parents and others concerning incidents of improper use of restraint and seclusion and related student injuries. OPA was able to complete its investigation and publish its findings after an injunction was issued in February 2005, but the school appealed the legal basis of the District Court's order. Upon invitation by the Second Circuit Court of Appeals, the US Departments of Education and Health and Human Services submitted an amicus brief urging affirmation of the lower court decision, in which the court ruled that the P&A was entitled to investigate abuse and neglect in non-residential settings under the federal access authority granted in federal acts authorizing P&A abuse and neglect investigations. "These decisions are a tremendous victory for special education students and their parents," said OPA Executive Director Jim McGaughey. "They make very clear that the P&A authority to investigate abuse and neglect does not stop at the school house door. This is especially important as increasing numbers of students with emotional and behavioral disabilities are educated in local schools." References:
Money Follows the Person: The Advocate Proposal [This is a copy of the "advocate proposals" we put together in New York State. We are still working with the state to define what the final proposal will look like. FREE OUR PEOPLE! — Bruce Darling, NYS ADAPT] MFP Advocate Proposals Barrier: The lack of affordable, accessible, integrated housing Whether you ask an Independent Living Center advocate working to transition an individual out of a nursing home or the National Council on Disability, the single biggest barrier to people living in the Most Integrated Setting is always the lack of affordable, accessible, integrated housing. Generally, the people we would want to transition through MFP do not have housing. CMS clearly recognized the importance of this issue and included review criteria that assures proposals will address housing. Our proposal must address this critical issue. Proposed actions:
Ultimately the success of MFP is measured in the number of people who return to community living from institutional settings. MFP will not be successful unless people are identified and transitioned. There currently is no process to identify individuals for transition in New York State. Proposed action:
Many people who have successfully transitioned back into the community were unaware that they had other options when they were initially institutionalized. In recognition of this fact, a number of states that decided to reduce their reliance on institutional services have developed a pre-admission assessment process for individuals going into nursing facilities. In fact, Minnesota went so far as to change the name of the process. Their "pre-admission screening" was renamed a "long-term care consultation" to better reflect the philosophy of providing choice to consumers. By identifying people at this stage of the process, we can allow them to return to the community before they lose their informal supports and housing. Proposed action:
The enrollment process for the TBI waiver (and by extension the NFTD waiver) is too slow to accommodate people who need community based services in order to leave hospitals and avoid nursing facility placement. Proposed action:
Focus Given that the major objective of the Money Follows the Person Rebalancing demonstration as set out by Congress was, "to increase the use of home and community-based, rather than institutional, long-term care services," it is critical that the proposal focus on areas of the state's long-term care system that need to be rebalanced as measured by institutional and community-based service expenditures. Although they may be laudable goals, this is NOT a proposal to make the long-term care system nicer, more efficient, or more person-centered. According to the last Medstat data available to advocates (2002), OMRDD Medicaid expenditures were mostly "community-based" at 50.17%. This was an increase of nearly 10% in the percentage of community-based services in four years. Conversely, Medicaid expenditures were predominantly institutional for the aged and persons with disabilities, with the percentage of expenditures for community care at 31.43%. That percentage had increased by less than one percent in the four years after the Olmstead decision. The trends in service delivery have not changed much since 2002, and it is likely that the percentage in OMRDD community-based expenditures has increased further while the percentage for aged and physically disabled individuals has remained flat. Given the vast disparity in these service trends, New York must focus its MFP proposal in the area with the greatest need and rebalance the long-term care system that serves seniors and people with physical disabilities. Continued waiver eligibility Advocates are concerned that individuals in nursing facilities may choose the option of community-based services, but run the risk of losing all supports after they have been in the community and are assessed by their localities. The state of Michigan created a level-of-care category called "service dependency" for individuals who have been in the nursing facility for one-year or more. This has been a problem with the TBI waiver where individuals were in nursing facilities but determined to not need that level of care when reassessed by the counties after moving into the community with waiver services. As part of the MFP proposal, New York should designate such a category which would assure the individuals transitioned to the community would continue to be eligible for waiver services even if their level of care was determined to have changed post-transition. Consumer Directed Services The state's "qualified home and community-based program" must include the Consumer Directed Personal Assistance Program. CDPAP has been critical to many transition efforts and highlighting this program helps assure that the proposal is scored positively for including consumer directed services. This approach requires that individuals transition from a system where they are completely powerless to one where they are completely in control. Often the consumer's fear of this level of responsibility results in them remaining in an unnecessary institutional placement. To make this transition individuals need training in attendant management and support with recruitment and emergency backup. As part of the MFP proposal, the project should include efforts to address consumer training and support with consumer direction as well as model approaches to handling emergency backup within a fiscal intermediary model. Addressing Nurse Practices Act Issues to increase consumer control The current proposal for the Nursing Facility Transition and Diversion (NFTD) Waiver would allow individuals to participate in the state plan Consumer Directed Personal Assistance Program so that they could manage their attendants who provide day-to-day assistance as well as more complex tasks such as trach care, suctioning, and tube feeding. However, due to restrictions in the Nurse Practices Act, those same individuals would be required to receive safety monitoring where the attendant simply is available if the person needs assistance, through a traditional home care agency, where the attendant is supervised by a nurse. Consumer directed services have proven to be a key service for transitioning individuals back into the community. The quality and consistency of service makes community living a viable option for some individuals who cannot receive services through traditional home care. To address this barrier the MFP proposal should include action steps to eliminate this unnecessary barrier to community living and consumer control. Addressing the issue of "safety" The current home care regulations and DOH review process has created a system where the home care agencies are unwilling to serve individuals because they are concerned about the potential for citations from DOH reviewers. These issues was clearly identified during the DOH Discharge Planning Workgroup. During that process, participants identified regulatory changes which would promote community living by addressing this issue. The proposal should incorporate that feedback and make those regulatory changes to promote community living.
For more information, contact the NATIONAL ADAPT MAILING LIST
Source: ADAPT, 10/4/06, Moderator Where Yoga Begins: A paraplegic teacher tests mind-body integration By Andi McDaniel Most people would consider Matthew Sanford a living miracle. Nearly 30 years since the car accident that killed his father and sister — and left him paralyzed from the chest down — the youthful 40-year old is a yoga teacher, sought-after speaker, and newly anointed author of Waking: A Memoir of Trauma and Transcendence (Rodale, June 2006). He's also a dedicated husband and father. As we share a table at a sunny, neighborhood cafe — he in his wheelchair, I in one that's stationary — he wears a big, easy grin, like someone with a wonderful secret he's dying to share. As it turns out, Matthew's secret will change the way I feel about yoga, disability and, for that matter, life in general. And it just might do the same for you. Yoga for Any Body Glance at the cover of any yoga magazine, or an ad for a trendy new line of yoga wear, and it's easy to typecast how yoga is supposed to look — a nimble, 20-something in an elegant backbend, or a roomful of well-behaved downward-facing dogs sheathed in tight, cropped black pants. But the most convincing examples of yoga's power don't necessarily fit this mold. As Sanford phrases it, 'Yoga moves through any body.' And if anybody should know, it's Matthew. After 12 years of simply tolerating his disability — essentially dragging around everything below his should blades 'like a head on a stick' — Matthew decided there had to be a better, fuller way of understanding his body. At the time, his only strategy for coping with his disability was the Western medical model, which typically encourages people with spinal cord injuries to overcome — or compensate for — their paralysis. Perhaps it's his unusually tender heart, or maybe his irrepressible curiosity — but Matthew wasn't content knowing just one-third of his physical being. At the time of this realization, he was in graduate school, studying philosophy at the University of California, Santa Barbara — one of many stages in his long search for answers. He recalls explaining his decision to take a leave of absence to his graduate advisor: 'I have to take care of my body. I'm coming apart.' Not long afterward, Matthew met his lifelong teacher. Jo Zukovich, an Iyengar yoga practitioner, had no experience working with students with spinal cord injuries — and in fact, neither did any other yoga instructor he could find at the time. What Matthew and she were about to explore was uncharted territory. Luckily, Jo had what Matthew calls 'an uncanny ability to empathize into another's body.' To teach Matthew, Jo would have to connect intuitively with his experience of paralysis. But first, the pair faced some basic obstacles — like figuring out how Matthew would get from wheelchair to yoga mat and back again, on a daily basis. Also, from years of physically compensating for his injuries, Matthew's body was totally out of alignment. With his upper body hunched to the left, and his weight resting on his right hip, Matthew would sit on his mat so crookedly that one leg was three inches ahead of the other. Much of Matthew and Jo's early work focused on simply tracking his body into a straight line. Luckily, as early as their first meeting, Matthew began to feel tremendous benefit from the simplest yoga poses. Upon 'taking his legs wide' for the first time, Matthew experienced a rush of energy he hadn't thought possible. Then, prayer pose facilitated a sense of upward energetic release. Gradually, he begins to feel what he calls 'an energetic awareness — a tingling, a feeling of movement, not outward but inward, a sense of hum' throughout his paralyzed body. He explains it this way: 'The mind is not strictly confined to a neurophysiological connection with the body. If I listen inwardly to my whole experience (both my mind's and my body's), my mind can feel into my legs.' Of course, Matthew will never regain muscle control in the lower two-thirds of his body, but what he does experience suggests that a meaningful — and thoughtful — connection exists beyond the scope of the spinal cord. 'I do not have the luxury of confirming my presence through flexing muscles,' Matthew says. 'And yet, I still experience a level of integration.' Today, when Matthew sits on a yoga mat, legs crossed in lotus pose, he is a vision of grace and balance. Jo is constantly amazed. 'The things he can do now — and make look so easy — were so difficult back then,' she recalls. In fact, despite Matthew's lack of feeling throughout his abdomen, his practice has enabled him to develop some abdominal control that gives him increased mobility. And while he still wouldn't giggle if you tickled his feet, Matthew's lower body glows with presence and life. An Out of Body Society To witness Matthew's facility with his body — a body he admits is a 'hard one to live in' — is to feel awe at the human spirit, to be reminded that it can thrive even in unimaginable adversity. Matthew's bright spirit has attracted all sorts of wonders into his life, from his wife Jennifer — whom he's known since childhood but had never dated — to his extroverted six-year-old, Paul, whose playful eyes peek out from under an abundant crop of thick, blonde hair. Matthew asks me toward the end of our conversation, squinting under an intense June sun, 'At its core, living is a sensation, isn't it?' Trauma or not, I know that he means it. But what Matthew's experience demonstrates about mind-body integration is not limited to incidents of trauma. 'What's the difference,' he asks plainly, 'between someone in a wheelchair and someone who sits at a desk, for eight hours every day?' His point, of course, is that many of us detach from our bodies on a regular basis, such as the nature of the modern world. As we grow ever more familiar with the virtual reality of our computers and cell phones, inevitably we become more detached from our physical realities. As Matthew explains it, 'We can no longer rely on the natural course of our lives to manage the mind-body relationship, to maintain a sense of inward presence.' How then, are we supposed to stay in touch with our bodies? Through programs called 'Bringing Your Body to Work' and 'Yoga at the Desk,' Matthew teaches corporate employees about the value of maintaining presence in the body. 'Your body is your most underutilized asset,' Matthew tells them. 'It's the best home your mind will ever have.' From Here, Yoga Begins In addition to the outreach programs and able-bodied yoga classes he teaches through Mind-body Solutions, the nonprofit he founded, Matthew also teaches an Adaptive Yoga class at the Courage Center, a well-known rehabilitation organization in Minnesota. The class, which is based oh the Iyengar principles of alignment and precision, is one of few in the country open to a variety of disabilities. When Matt Sanford began practicing Iyengar yoga with Jo Zukovich in 1991, there were few available resources on adaptive yoga. Today, the field is still relatively new — but thanks in part to Matt and Jo's pioneering work, future students won't have to start from scratch. Here's a head start:
Teaching yoga to students with disabilities — ranging from cerebral palsy to multiple sclerosis — has deepened Matthew's respect for the transformative power of yoga. With the range of challenges presented by each student (including students with brain injuries, some of whom have difficulty remembering poses week to week), Matthew's class isn't the portrait of serenity ('more like organized chaos,' he jokes). Yet it is perhaps the ultimate illustration of what yoga is all about. After all, a physical disability is essentially 'mind having a hard time moving through the body,' he says. 'Which is just an extreme version of what we all experience.' Throughout the adaptive yoga class, Matthew reminds his students to approach their practice from a place of acceptance. 'From here, yoga begins,' he says. For students with severe physical disabilities, yoga begins in a difficult place. But yoga moves nonetheless through any body that takes the time to open the door. Source: Conscious Choice, pp. 48-52, August 2006. A Healthcare Television Series All Americans Should See On Thursday, October 5, PBS stations around the country will begin airing Remaking American Medicine (check local listings), an unprecedented and hard-hitting investigative series that explores the quality of the healthcare available in this country. It is an issue that should concern every American, because poor medical care puts us all at risk. Today in the U.S., patients have just a 50/50 chance of getting the right medical care at the right time. Nearly 100,000 die in hospitals each year due to preventable medical errors, and a million more are injured. These errors drive up the cost of care, raising prices for all of us and making healthcare even less accessible to people with low incomes and those who are under- or uninsured. The National Partnership for Women & Families has been working to improve the quality of healthcare in this country for years, and to give consumers a voice in this complex and contentious debate. We have never before recommended a television series on any issue, but we are asking our members and allies to watch this one because we think it addresses one of the most important issues of our time. Over the course of four programs, Remaking American Medicine takes a close look at the impact of medical errors, the challenge of treating chronic diseases, and the medical practitioners, patients, families and activists who have joined together to find ways to improve a healthcare system that is failing so many of us. The program shines a spotlight on gaps in care that may harm us all, and offers both solutions and hope. It is important television that has the potential to engage the public as well as the policy makers who can adopt needed reforms. Please help spread the word about the series with your members.
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