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The Council for Disability Rights |
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May / June 2004
Stairway to Justice By Harriet McBryde Johnson Monday, May 17, was an interesting day for civil rights. As the first same-sex marriages were performed in Massachusetts and people everywhere observed the 50th anniversary of Brown v. Board of Education, the US Supreme Court delivered another important civil rights victory in Tennessee v. Lane. However, unlike Brown, the new ruling was a squeaker — 5 to 4 — and its terms conspicuously grudging and circumscribed. People with disabilities count it as a victory when rights simply aren't rolled back as far as they might have been. The legal question in Lane was whether Congress had authority under the equal protection clause to enact Title II of the Americans With Disabilities Act and ban discrimination based on disability by state governments. To make this mandate real, governments must make their programs accessible by removing architectural barriers or by other reasonable modifications, like relocating services to other facilities. The facts in Lane involved access to courthouses. One paraplegic plaintiff had to leave his chair and crawl up two flights of stairs to get to his own hearing; after the court recessed for lunch without reaching his case, he declined to make the climb again or to be carried up the stairs, and was arrested and jailed for failure to appear. The second plaintiff, a court reporter who uses a wheelchair, can't work in a number of courtrooms because of architectural barriers. As a lawyer in a power wheelchair, I cannot take access for granted. I cannot even assume others have a basic comprehension of how I move around in the world. Because I cannot walk, crawl or safely be carried, even one step keeps me out as surely as would a sign saying "No cripples allowed." People often offer to carry me, as if the offer itself discharges any duty to remove the unnecessary barriers in my way. When I decline to be carried, I am made to feel ungracious. Beyond that, I am rendered unable to do for myself and my community. In light of such compelling facts, it seems hard to imagine how anyone could deny the plaintiffs a day in court. The issue should be what to do about the problem, not whether these plaintiffs have a right to be heard under the Americans With Disabilities Act. However, in 2001 the Supreme Court ruled that states may not be sued under the ADA for money damages for employment discrimination — regardless of the facts. That ruling raised the question of whether victims of disability discrimination may invoke the law when the aim is not to get money but to require states to provide access. In Lane, the court ruled yes, but only because another federal constitutional right — access to the courts — was at stake. Associate Justice John Paul Stevens wrote for the majority: "Congress enacted Title II against a backdrop of pervasive unequal treatment in the administration of state services and programs, including systematic deprivations of fundamental rights." The court noted a history of discrimination in such areas as voting, jury service, institutional conditions, public education, unreasonable zoning decisions and "a pattern of unconstitutional treatment in the administration of justice." In a concurring opinion, Associate Justice David H Souter pointed out that the history is even worse: courts themselves have promoted invidious discrimination. He wrote, "In sustaining the application of Title II today, the court takes a welcome step away from the judiciary's prior endorsement of blunt instruments imposing legal handicaps." It is a step, and a welcome one. When a state's refusal to accommodate interferes with some fundamental right, the ADA provides a vehicle to deal with it. A contrary decision would have been devastating. Had Title II been overruled, for example, the disability rights movement would have lost a key tool in its quest for a world in which states no longer require institutional confinement as a condition for receiving long-term care. But what if the issue is not freedom from lockup or access to a courthouse, polling place or public school? What if it's about access to a state-run museum exhibit or concert? In such a case, the current court might not allow an ADA suit against a state, no matter how simple the remedy or how unreasonable the conduct. The Supreme Court majority apparently sees no equal protection violation in the states' routine exclusion of people with disabilities from services that other people take for granted. Three of the dissenters would go so far as to deny that inaccessibility precludes access. Apparently expecting people with disabilities to be carried up stairs, Chief Justice William H Rehnquist, joined by Associate Justices Clarence Thomas and Anthony M Kennedy, wrote, "We have never held that a person has a constitutional right to make h is way into a courtroom without any external assistance." Statements like that illustrate the continuing gulf between the reality of disabled lives and others' understanding, a gulf that is the natural consequence of the years of isolation and exclusion that the ADA targets. While I rejoice that Charleston's state and federal courthouses have now been made accessible, other places remain inaccessible. For many decades, long flights of stairs made statements about the grandeur and power of the law. They reflected prevailing assumptions about the abilities of the people who would be participating in public life. By design, they were humbling, even disempowering. Ramps, elevators and appropriate use of government spaces have the opposite effect. For people with disabilities, it is impossible to conceptualize equal protection of the law without them. Source: The New York Times, May 30, 2004. Note: Please join us in thanking the editors of the NYTimes Sunday Magazine for their continuing use of Ms Johnson's insights. Her voice speaks for the majority of us — in its fearlessly firm, truthful, and courteous tone. Justices Find States Can Be Liable for Not Making Courtrooms Accessible By Linda Greenhouse WASHINGTON, May 17 — States that fail to make their courthouses accessible to people with disabilities can be sued for damages under federal disability law, the Supreme Court ruled on Monday in a significant break from recent decisions that gave the states broad immunity from suit under various federal laws. The 5-to-4 decision was a narrow one not only in the vote margin but also in the scope of the holding. Rather than validate, or even address, Congress's decision in the Americans With Disabilities Act to open the states to suit for failing to make accessible a broad array of public services and programs, Justice John Paul Stevens confined his majority opinion to the specific context presented by the case: access to court. The case was brought by six disabled Tennessee residents, including a man who regused to crawl or be carried up to a second-floor courtroom in a county courthouse ito answer a criminal traffic complaint. He sued after the state charged him with failing to appear for his hearing. Other contexts covered by Title II of the disability law, which prohibits governments from discrimination on the basis of disability in access to their "services, programs or activities," must await future rulings. Clearly there is no margin to spare, and claims involving access to places where fundamental rights are not usually exercised — publicly owned hockey rinks were one example the majority mentioned in passing — may not fare as well. Nonetheless, the very fact that this fragile majority — with the crucial fifth vote provided by Justice Sandra Day O'Connor — managed to carve out one disputed application of the law and uphold it in the face of Tennessee's claim of constitutional immunity, was a development with potentially broad implications. In a dissenting opinion, Chief Justice William H Rehnquist objected strenuously to the majority's case-by-case approach, arguing that a law like this one should stand or fall as a whole. "Congress can now simply rely on courts to sort out which hypothetical applications of an undifferentiated statute, such as Title II, may be enforced against the states," he said. The chief justice left no doubt of his view that Congress lacked constitutional authority to make the law binding on the states. Justices Anthony M Kennedy, Clarence Thomas and Antonin Scalia also voted in dissent, with Justice Scalia writing separately to urge the court to take a fresh approach to the immunity issue in order to give clearer guidance to Congress. In addition to Justices Stevens and O'Connor, those in the majority were David H Souter, Ruth Bader Ginsburg and Stephen G Breyer. In a concurring opinion, Justice Ginsburg said that "legislation calling upon all government actors to respect the dignity of individuals with disabilities is entirely compatible with our Constitution's commitment to federalism, properly conceived." Justice Souter also wrote a concurring opinion, to say that judges had been part of the history of official mistreatment of people with disabilities, for years enforcing or upholding laws or policies that were flagrantly discriminatory. That history was at least arguably relevant, because the factual dispute within the court centered on whether Congress had sufficient justification for opening the states to suit under the Americans With Disabilities Act. As interpreted in recent decisions, the 11th Amendment to the Constitution ordinarily bars private lawsuits against states in federal court unless Congress has acted within its own authority to abrogate that immunity. Further, the court has ruled, Congress can validly take that step only in the exercise of its power to enforce the equal-protection and due-process guarantees of the 14th Amendment, and only then as a "congruent and proportional" response to official failure to enforce those guarantees. So the record of past lapses has become crucial. In a 5-to-4 ruling in 2001, the court held that Congress had lacked a basis for permitting states to be sued under Title I of the disability law, which applies to state employment. There was an insufficient record of state discrimination against disabled public employees, Chief Justice Rehnquist said for the majority then, while suggesting that the record for Title II, public services, might be different. It was different, Justice Stevens insisted on Monday. In its years of consideration before passing the disability law in 1990, "Congress learned that many individuals, in many states across the country, were being excluded from courthouses and court proceedings by reason of their disabilities," he said. Chief Justice Rehnquist replied that the evidence was anecdotal and insufficient to document a systemic problem. A year ago, a majority opinion by the chief justice held that Congress had properly stripped the states of immunity under the Family and Medical Leave Act, which gives male and female workers the right to 12 weeks' leave for family emergencies. In that opinion, Chief Justice Rehnquist called the law a valid weapon against a documented history of workplace sex discrimination, which he said was based on employers' stereotyped view that caring for the family was women's work. Justice Stevens said Monday that Congress had even stronger evidence of discrimination against people with disabilities. The unresolved tension between last year's decision and Monday's was a reminder of how tenuous either side's hold is on this rapidly evolving area of law. As for the latest case, Tennessee v Lane, No. 02-1667, it was clearly more important for Justice Stevens and his usual three allies to win Justice O'Connor's support than to set out a far-reaching critique of the 2001 disability decision or of others she had joined on the states'-rights side. The majority's focus on the "basic right" of access to court thus served its purpose without prejudging future cases. The new decision affirmed a ruling by the US Court of Appeals for the Sixth Circuit, in Cincinnati. Last year that court rejected Tennessee's claim of immunity from a suit brought in 1998 by George Lane, the man who could not reach the courtroom, and Beverly Jones, a court stenographer whose reliance on a wheelchair kept her from many Tennessee courtrooms. Four other plaintiffs later joined the lawsuit, which has yet to go to trial. ... Source: The New York Times, 5/18/04. Who tests voting machines? Whenever questions are raised about the reliability of electronic voting machines, election officials have a ready response: independent testing. There is nothing to worry about, they insist, because the software has been painstakingly reviewed by independent testing authorities to make sure it is accurate and honest, and then certified by state election officials. But this process is riddled with problems, including conflicts of interest and a disturbing lack of transparency. Voters should demand reform, and they should also keep demanding, as a growing number of Americans are, a voter-verified paper record of their vote. Experts have been warning that electronic voting in its current form cannot be trusted. There is a real danger that elections could be stolen by nefarious computer code, or that accidental errors could change an election's outcome. But state officials invariably say that the machines are tested by federally selected laboratories. The League of Women Voters, in a paper dismissing calls for voter-verified paper trails, puts its faith in "the certification and standards process." But there is, to begin with, a stunning lack of transparency surrounding this process. Voters have a right to know how voting machine testing is done. Testing companies disagree, routinely denying government officials and the public basic information. Kevin Shelley, the California secretary of state, could not get two companies testing his state's machines to answer even basic questions. One of them, Wyle Laboratories, refused to tell us anything about how it tests, or about its testers' credentials. "We don't discuss our voting machine work," said Dan Reeder, a Wyle spokesman. Although they are called independent, these labs are selected and paid by the voting machine companies, not by the government. They can come under enormous pressure to do reviews quickly, and not to find problems, which slow things down and create additional costs. Brian Phillips, president of SysTest Labs, one of three companies that review voting machines, conceded, "There's going to be the risk of a conflict of interest when you are being paid by the vendor that you are qualifying product for." It is difficult to determine what, precisely, the labs do. To ensure there are no flaws in the software, every line should be scrutinized, but it is hard to believe this is being done for voting software, which can contain more than a million lines. Dr David Dill, a professor of computer science at Stanford University, calls it "basically an impossible task," and doubts it is occurring. In any case, he says, "there is no technology that can find all of the bugs and malicious things in software." The testing authorities are currently working off 2002 standards that computer experts say are inadequate. One glaring error, notes Rebecca Mercuri, a Harvard-affiliated computer scientist, is that the standards do not require examination of any commercial, off-the-shelf software used in voting machines, even though it can contain flaws that put the integrity of the whole system in doubt. A study of Maryland's voting machines earlier this year found that they used Microsoft software that lacked critical security updates, including one to stop remote attackers from taking over the machine. If so-called independent testing were as effective as its supporters claim, the certified software should work flawlessly. But there have been disturbing malfunctions. Software that will be used in Miami-Dade County, Fla, this year was found to have a troubling error: when it performed an audit of all of the votes cast, it failed to correctly match voting machines to their corresponding vote totals. If independent testing were taken seriously, there would be an absolute bar on using untested and uncertified software. But when it is expedient, manufacturers and election officials toss aside the rules without telling the voters. In California, a state audit found that voters in 17 counties cast votes last fall on machines with uncertified software. When Georgia's new voting machines were not working weeks before the 2002 election, uncertified software that was not approved by any laboratory was added to every machine in the state. The system requires a complete overhaul. The Election Assistance Commission, a newly created federal body, has begun a review, but it has been slow to start, and it is hamstrung by inadequate finances. The commission should move rapidly to require a system that includes: Truly independent laboratories. Government, not the voting machine companies, must pay for the testing and oversee it. Transparency. Voters should be told how testing is being done, and the testers' qualifications. Rigorous standards. These should spell out in detail how software and hardware are to be tested, and fix deficiencies computer experts have found. Tough penalties for violations. Voting machine companies and election officials who try to pass off uncertified software and hardware as certified should face civil and criminal penalties. Mandatory backups. Since it is extremely difficult to know that electronic voting machines will be certified and functional on Election Day, election officials should be required to have a non-electronic system available for use. None of these are substitutes for the best protection of all: a voter-verified paper record, either a printed receipt that voters can see (but not take with them) for touch-screen machines, or the ballot itself for optical scan machines. These create a hard record of people's votes that can be compared to the machine totals to make sure the counts are honest. It is unlikely testing and certification will ever be a complete answer to concerns about electronic voting, but they certainly are not now. Source: The New York Times, 5/30/04. Note: Contact the US Election Assistance Commission at 1225 New York Av. NW, #1100, Washington DC 20005; Brian Whitener, 202/566.3100. Housing authorities, Fannie Mae open doors to homeownership For Indianapolis resident Michelle Porter, the dream of homeownership is finally a reality. Porter, who has cerebral palsy, celebrated at her housewarming party in mid-March with Mayor Bart Peterson and other local officials who hoped to draw attention to new homeownership options for people with disabilities. Porter purchased the home with financing from the Section 8 Housing Choice Voucher Homeownership Program and a Fannie Mae HomeChoice mortgage. The Section 8 program — available in many Hoosier communities — allows people with disabilities to apply rental vouchers toward mortgage payments, while the HomeChoice mortgage offers low down payments and flexible qualifying criteria. "All public housing agencies in the state have the option to offer the Section 8 homeownership program, but not all of them have opted to do that," said Deborah McCarty, coordinator of the Back Home in Indiana Alliance. If housing agencies do not offer the program, advocates can encourage them to do so. Agencies must annually update their five-year plans, which identify community housing needs. Because agencies are required to seek public input, advocates have an annual opportunity to focus attention on the need for the home ownership program in their communities. For more information on the Section 8 home ownership program, contact the Indiana Housing Finance Authority at 800/NOW-IFHA (669.4432) voice. For more information on HomeChoice mortgages, call Fannie Mae's Consumer Resource Center at 800/732.6643 voice or 877/889.4327 voice/TT. Source: on target, May 2004. Affordable housing in crisis House Republicans who authorized cuts in federal housing subsidies for the poor are now fuming about the bad publicity about the cuts. It's strange that anyone was surprised at the negative reaction. The cuts place tenants in some cities at risk of losing subsidized housing, and financial institutions are beginning to express doubts about continuing to participate in the kinds of development projects that have built much of the nation's affordable housing. If the lawmakers really regret the damage they have done, there is still time for them to undo it. The recent promise by the Department of Housing and Urban Development to shovel an extra dollop of money into the current program won't do the trick. HUD needs to rethink its hostile approach to paying for the critical Section 8 program, which furnishes rent subsidies for two million of the country's most vulnerable families. Section 8 has survived the generation-long assault on public housing because it is based partly in the private sector. Rather than building affordable housing itself, the government guaranteed subsidies for rents in the private market. Families, most of them living at or below the poverty level, pay 30 percent of their incomes toward rent, and Section 8 vouchers pay the remainder. Developers used the Section 8 guarantees as backing when they raised money for low- or mixed-income developments. But despite its theoretical commitment to the private market, HUD has gotten tired of meeting the fast-rising housing prices in some markets. It announced recently — with Congressional blessing — that it would no longer pay the full cost of the vouchers. It froze federal funds at the level of August 2003, plus an adjustment for inflation. This is a tactic the Bush administration has used in other areas as it tries to halt open-ended commitments for federal funds in favor of set block grants. A "block grant," however, is simply a cut by another name. Neither the poor nor the local housing authorities have the power to make rents conform to those dictates. In high-cost areas like New York and San Francisco, officials will have trouble finding landlords and builders who will accept Section 8 tenants because the vouchers will no longer provide a predictable level of support. Families who have been lucky enough to get Section 8 help may wind up having to pay more rent. Perhaps worst of all, the financial community has begun to react. A New England bank has scrapped an innovative home mortgage program aimed at promoting home ownership through Section 8. Wall Street bond traders have warned that the cuts could cause the bond market to lose faith in Section 8-related programs, undermining the bonding process that makes it possible to build affordable housing. The incomes of the poor do not expand just because real estate values do. If these ill-advised cuts are allowed to stand, a public-private partnership that has been producing affordable housing since the Nixon years will wither and die. Source: The New York Times, 5/22/04. Long Beach Housing Trust Fund Coalition The City of Long Beach is considering the creation of local housing trust fund in conjunction with the adoption of an inclusionary zoning ordinance and a commercial linkage impact fee ordinance. The Long Beach Housing Trust Fund Coalition has come together both to support the City's initiative, but also to ensure that the trust fund is effective in addressing the City's most critical housing needs. The Long Beach Housing Trust Fund Coalition is a group of local community-based organizations, religious organizations, and community members that have already secured more than one hundred endorsements for their position statement. The Coalition held a public forum to discuss housing needs in Long Beach and the need for the housing trust fund. They have been featured on a local radio program; participated in the League of Women Voters' Public Forum on Affordable Housing; have met with most City Council members; publicized their position statement, including information about inclusionary zoning and commercial linkage fees; created an on-line presence to provide information; and have met numerous times with City staff. Nearly one-fourth of Long Beach renters spends more than half of their income on rent. And Long Beach has the lowest vacancy rate in Los Angeles County, hovering at 3.7% and expected to drop to 3% in 2004. One-fifth of Long Beach renters lives in overcrowded conditions. The goal of the Coalition is to persuade the City to create a housing trust fund to increase opportunities for Long Beach residents to have safe, decent, affordable and accessible housing. The City currently spends about $11 million a year to support affordable housing initiatives . . . the Coalition is asking that these funds be tripled to $33 million a year to address the critical housing needs that exist. The Coalition's position statement includes a number of principles important to the adoption of the housing trust fund. These include:
The city anticipates considering the proposed ordinances and the housing trust fund later this year. The Coalition continues to build its ranks and exert pressure to win its platform. Contact: Joshua Butler, Disabled Resource Center, 2730 E Spring Street #100, Long Beach CA 90806, 562/427.1000 Ed. Note: Coalition members are Association of Patient Advocates, Cambodian Assoc. of America, Catholic Charities (San Pedro Region), Disabled Resource Center, Greater Long Beach Interfaith Community Organization, Livable Places, Long Beach Community Action Network, Long Beach Area Coalition for the Homeless, National Mental Health Assoc. of Greater Los Angeles, Road to Recovery Homes, Second Samoan Congregational UCC, SHARE Center/PSUM Inc., SCANPH. Source: Housing Trust Fund Project News, Spring 2004. It Doesn't Have to Be This Way: MiCASSA — New Hope for the Elderly and the Disabled By Linda Bennett When I was a young child I would go with my family to visit my grandmother in the nursing home in which she resided. I would see sadness all around me. It was so institutional and impersonal — with disillusioned-looking elderly people, sterile white sheets, uniform hospital beds, and identical matching rooms. Everything we gave to my grandmother had to be marked with her name in an effort to protect her from the frequent theft that occurred in the home. After every visit I would wonder to myself, "Why does it have to be this way?" When I was a teenager I worked in a nursing home, and again I saw the sadness all around me. The residents would tell me of the "old days" when they were younger and healthier and living in their own homes. They so missed their own homes; they so missed their families; they so missed their old communities. I had frequent conversations with one of my favorite residents, Frank. He was elderly and frail, yet full of determination and strength. He would talk to me about his wife, who had since passed away, and about the home that they used to share. Frank told me about how he had worked hard all of his life to provide for his family, but that in his later years, a single serious illness depleted his entire life's savings. Left with no money, Frank had no other option but to move into a nursing home, because Medicaid would only pay for his care if he resided in a nursing home. Frank so hated living in the nursing home. He especially hated the bland food, the lack of people to converse with, and the absence of having "important things to do." It was quite evident that he never felt "at home" there. I always thought that Frank never really seemed to belong there in the first place, and I was quite amazed and impressed at the ways in which he created his own "place" within the home. Frank's mind was quick and his patience was low. Almost every time that I saw Frank he was reading. In fact, I rarely ever saw an occasion in which he did not have the daily newspaper in hand or tucked under his arm. While he was never unkind to the other residents, he did seem to resent being placed in a situation where he had barely anyone to really converse in the way that he had wanted. He also was quite vocal about which employees of the home that he had little regard or respect for. Frank found "his own way" the best that he could. He kept busy with his reading, he conversed with the employees that he liked, and he even volunteered at the home. It was Frank's responsibility to lock up the front door every night at eight p.m. and Frank took this responsibility very seriously. Never was there a night when those doors were not locked at exactly 8:00 p.m. And never was there a night when Frank forgot to check in on me and make sure that I had a ride home. In fact, he often would stay in the lobby until my father arrived to pick me up. Only then was Frank's working day over and he would retire to his room. Frank's room was like his refuge. He liked his privacy and he was determined to protect his personal possessions in the same way that he protected his personal pride and independence. It disturbed me greatly when Frank told me that he had to chain his television to the table in his room and stay awake every night to guard the little possessions that he had left in this world. Again, I would always wonder, "Why does it have to be this way?" As an adult I faced the pain of seeing my own father in a nursing home, and once again I saw sadness all around me. I was especially astonished to see that there were some young nursing home residents living in the home as well. They were most likely destined to spend the rest of their lives in the nursing home due to their disabilities. Regardless of their ages or their conditions, I knew that the majority, if not all, of the residents did not want to be in the home, and I could see the sadness in their families' faces as well. My family and I shared a common bond with many of these other families, sometimes spoken, and sometimes not; it was the wish that things could be different. We, like our loved ones residing in the nursing home, desperately wished that we had other choices. We all constantly worried about whether our loved ones were receiving the care that they needed. Our worries were not unfounded. We knew that certain employees were very dedicated and good to the residents, but we also knew that there were many employees who were not. There were the falls that my father had that were never reported to us. We would find out after the fact by seeing bruises on him, only to then be told that he had fallen days earlier. There were the frequent breakdowns of the air conditioners during the hottest of summer days. But worst of all was the night that my family and I arrived only to learn that my father had not been given anything to eat or drink the entire day. Because my father was too ill at this time to feed himself, he had to rely on the staff to feed him and we were assured that he would be fed his meals. However, on that Sunday night at 7:00 p.m. we were horrified to learn from one of the other residents that my father was not attended to the entire day. The employees had simply laid the tray down next to my father's bed and left, fully knowing that he did not have the strength to sit up and feed himself. Even more heartbreaking was the fact that my father did not even tell us himself, but only whispered his answer to us when we asked him, thus confirming the horrifying news that we had just learned. It was as if my father did not even feel he was even worthy of food and drink. After this, my family and I made sure that a family member or one of the outside hospice staff was there for every meal. My father was too sick to be moved to another home, and we no longer trusted the nursing home to perform the most basic function of feeding my father. The only exception to this was the times when one of the few dedicated, trusted nurses were on staff, and we called to confirm it. I constantly worried about my father and I felt bad every time that I left the home, and more than ever I would ask myself, "Why does it have to be this way?" The reason it is "this way" is because the bulk of the money that Medicaid provides for the elderly and the disabled is restricted to institutionalized care. But now there is finally hope that the question, "Why does it have to be this way?" will become a thing of the past. This hope is in the [proposed] Medicaid Community- Attendant Services and Supports Act (MiCASSA). This act, which was introduced in the United States Senate on May 1, 2003, proposes to "amend…the Social Security Act to provide individuals with disabilities and older Americans with equal access to community-based attendant services and supports and for other purposes." The MiCASSA bill is a greatly needed and long-overdue bill which would allow dignity and equal opportunity to the disabled and the elderly by providing them with the following crucial needs: a choice in their long-term care, an opportunity to stay integrated in their communities, and the ability to stay with their families. We all want to have a choice in where we live. This is no different for the elderly and the disabled than it is for the rest of the population. In fact, it is even more crucial for the elderly and the disabled because of the dependence level that they will have at the place in which they will reside. Currently, the elderly and the disabled are not allowed this choice since states that receive Medicaid are only required to provide nursing home services. MiCASSA would change this by mandating that the federal government pay for home or community-based services for those who are able to live at home or in a community setting. According to the disability advocacy rights organization, American Disabled For Attendants Programs Today (ADAPT), the MiCASSA bill would allow for real choice as, "any individual who is entitled to nursing home or other institutional services will now have the choice to where and how these services are provided." For those individuals who are legally unable to make their own choices due to issues of mental illness, their designated legal guardians will be allowed to choose the best health care setting for them. As Americans we all understand the importance of having an integrated society. Our own tragic history has taught us how wrong forced segregation is. However, many Americans do not realize that a great majority of disabled and elderly citizens are segregated from the rest of society. Moreover, they are segregated solely because they are disabled. This policy is not only inhumane, but it is also discriminatory. As Senator Tom Harkin pointed out when he (along with Senator John Kerry and nine other senators) introduced the MiCASSA bill to the U.S. Senate, the Supreme Court has ruled in Olmstead v. LC that "needless institutionalization is a form of discrimination under the Americans With Disabilities Act." According to ADAPT, the MiCASSA bill would require that community-based "services be provided in the most integrated setting appropriate to the needs of the individual," therefore addressing this wrongful segregation and allowing many disabled and elderly people to once again live in their own communities. Perhaps the most tragic consequence of the current long-term care system in America, is the manner in which it separates families. The disabled and elderly are forced to live away from their families. Their families are painfully forced to choose between separation from their loved ones and their own mere survival, as most average Americans cannot financially afford to quit their jobs and remain home as full-time caregivers. MiCASSA would allow many families that are currently forced apart to be reunited. In many cases, it would prevent the needless further separation of families. No longer would the disabled and elderly and their families have to choose between healthcare and family, because home or community-based healthcare would provide both. It is often said that nobody can care for our loved ones as well as we ourselves can. Just as most parents feel safest when their children are in their own care, so too do most family members feel safest when their disabled or elderly loved ones are in their own care. Home-based and community-based long-term care allows for more personable and loving care. It also allows family members to have a greater say and knowledge of the care that their loved ones are receiving. MiCASSA would help keep families together-a matter that is of crucial importance to the elderly and the disabled, and to their families. MiCASSA provides concrete policies and solutions regarding long-term care for the disabled and the elderly that finally provides choice of healthcare, the ability to choose one's community, and the option of staying with family. Such thinking was basically unheard of years ago. Those in the disability community have worked hard to bring this bill to our government's attention. They desperately need the help of every American to ensure that this bill is passed. All of us should take responsibility by contacting our senators and representatives today and urge that this bill is passed. Additional information regarding the MiCASSA bill, as well as links to contact the appropriate government representatives is available on the ADAPT web site. In the words of Senator Tom Harkin, "People with disabilities and older Americans have waited too long for Congress to address this grave injustice. We need to shed light on this problem and enact legislation this year." Had MiCASSA been a law when my old friend Frank was alive, I am quite sure that he would have stayed in the home and community that he loved. He would have enjoyed the company of his family and friends, savored the taste of the Italian food that he so yearned for, and continued to attend the local church that he had attended all of his life. Most of all, Frank could have gone to sleep at night with a sense of security and peace, rather than staying up all night trying to protect his belongings and his individuality. Had MiCASSA been a law when my father was alive, perhaps my family and I could have obtained the personal, loving, and quality care for him that we had desperately longed for. If MiCASSA becomes enacted, perhaps we all can have the opportunity to have this type of care — should we someday be in need of it. Senate approves special education measure By Diana Jean Schemo WASHINGTON, May 13 — In a near-unanimous vote, the Senate on Thursday approved major changes in special education intended to reduce paperwork for teachers, bolster enforcement by state and federal authorities and limit lawsuits by parents seeking help for their children. The Senate rewrite of the Individuals With Disabilities Education Act (IDEA) addresses many of the same issues as a House version approved a year ago, like student discipline, paperwork and parents' lawsuits, but it provides greater legal protection for disabled students. While groups representing school administrators supported the House version, those representing disabled students condemned it. The Senate bill has won support from both camps. "This truly is a bipartisan bill," said Patrisha A Wright, director of government affairs for the Disability Rights Education and Defense Fund. "There are things that school districts love about it, and things they hate. There are things that parents love about it, and things they hate." The bill authorizes increases in federal spending on special education over the next six years of up to $2.2 billion a year, but senators rejected an amendment that would have obligated them to finance the full amount. In the past — most contentiously under the No Child Left Behind Act — Congress has spent well below the maximum amounts authorized for educating the nation's poorest children. The rejected amendment would have meant that 30 years after the special education law was passed, Congress would be fully financing its cost to the states. Under the amendment that won approval, Congress can increase aid but is not obligated to do so. Advocates for disabled children said the amendment, approved 96 to 1, would be of little consequence. "There's nothing that gives us any expectation that what hasn't happened in 30 years is going to happen now," said Paul Marchand, chief lobbyist for United Cerebral Palsy Association and the ARC, formerly the Association for Retarded Citizens. Senator Don Nickles, Republican of Oklahoma, cast the lone vote against the bill. In other areas, the Senate bill emphasizes new ways to gauge a school's performance, based more heavily on how well children meet academic goals rather than on how well schools provide individually tailored services. It does away with short-term reports on a child's advances toward individual goals and substitutes quarterly report cards on more general academic progress. The bill also encourages federal and state officials to monitor special education closely and to withhold financing to schools if necessary. A recent government survey showed that no state was fully meeting its legal obligation to provide educational services for disabled students. Less to the liking of advocates for the disabled, the Senate version sets a two-year deadline for parents to file complaints about their children's education, and a 90-day deadline for filing lawsuits. The Senate version stopped short of permitting governors to set limits on the fees paid to lawyers who successfully represent parents in suits against school districts. The House version permits governors to cap lawyers' fees. Senator Judd Gregg, Republican of New Hampshire and chairman of the Health Education Labor and Pensions Committee, said that while the bill was not perfect, "It's a very strong step in the right direction." Anne L Bryant, executive director of the National School Boards Association, also praised the bill, saying it would "substantially strengthen services for students with disabilities, while at the same time protect their rights." Democrats said they were concerned that the bill could change drastically in the conference committee, and would seek "guarantees" before permitting the conference to take it up. While Democrats are the minority in both houses, aids said they could use procedural tactics like filibusters to block the committee. The differences between the bills are significant. The House version, for example, permits schools to eject children for violations of "codes of conduct" without demonstrating that their disability did not cause the misbehavior. The Senate would require schools to show that the misconduct was unrelated to the disability. "We have to have some understanding about where we are," Senator Edward M Kennedy, the Education Committee's ranking Democrat, said after the bill's passage. "We're firmly rooted, firmly committed, to the Senate approach." Democratic aids said there were specific areas where they would seek "pre-conference guarantees," the thorniest of which involves procedural issues like student discipline, lawyers' fees and due process for disabled students. Source: The New York Times, 5/14/04. Resources on bullying Because we have received so many complaints from parents about bullying this Spring, we looked for some resources to share. 15+ Make Time to Listen-Take Time to Talk . . . About Bullying Take Action Against Bullying The Parent Advocacy Coalition for Education Rights (PACER) Center has developed an innovative curriculum addressing all types of bullying children with disabilities face. This resource is meant for professionals and parent leaders to present to parents at meetings, workshops, trainings and other occasions. Using research-based practices, PACER developed the one-of-a-kind curriculum that offers common-sense information and encouragement to families whose children experience bullying. The curriculum's appealing design and easy-to-follow format attracts and holds attention while delivering important, useable information. The curriculum is available from PACER for $15 on CD-ROM format or $165 with overhead transparencies and printed script. To order, call PACER at 888/248.0822. The content:
Another excellent resource is NICHCY (now the National Dissemination Center for Children with Disabilities): Select A-Z Topics where you will find a dozen other resources on the internet. | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
