> >"ACTION ALERT!! Segregation and Institutionalization" > >Bob Williams and Henry Claypool of Advancing >Independence: Modernizing Medicare and Medicaid (AIMMM >For a Better Tomorrow) <[log in to unmask]> write: > >Tell the President and the Governor of Alabama to End the >Forced Segregation of Americans with Disabilities: > >Nick Dupree will be forced against his will into a nursing >home by the State of Alabama after he turns 21 on February >23rd unless President Bush delivers on his promise to fully >enforce the ADA's integration mandate. Nick is not >unique. Another young man Alabama needlessly >institutionalized 195 miles away from everyone and >everything he knew and loved died a short time later. As >more States slash their Medicaid budgets, more of our >people will end up back in these places or be forced to sit >in their own waste at home. > >The other day in announcing his position on affirmative >action, the President said that "America's long experience >with segregation (is) behind us." Nothing could be further >from the truth. We have written the President strongly >urging him to send clear message to Alabama and other >States that the unjustified institutionalization and >segregation of people with disabilities is an egregious >violation of the ADA that will not be tolerated by the >federal government anywhere in our great >Nation. Specifically, we asked that he immediately: > > + Personally contact and convince the new Governor of Bob >Riley to take executive action to reverse his State's >policy of the unjustified institutionalization and >segregation of people with disabilities, whether young or >old. > > + Direct Attorney General John Ashcroft to take all >necessary action to fully enforce the civil rights of Nick >Dupree and others with disabilities in the nation to live >in the community with appropriate supports, free from >unjustified institutionalization. > > + Direct HHS Secretary Tommy Thompson to write every other >Governor to make clear that any similar policy or practice >in any other State will not be tolerated and must be >reversed immediately. > >The full text of the letter to the President is at the end >of this alert. > >Call, Write or E-mail President Bush Today - Insist that he >immediately: > >1. Contact and convince Bob Riley to take executive action >upon becoming the new Governor of Alabama to reverse his >State's policy of forced institutionalization. > >2. Direct Attorney General John Ashcroft to take all >necessary action to fully enforce the civil rights of Nick >Dupree and others with disabilities in the nation to live >in the community with appropriate supports, free from >unjustified institutionalization. > >3. Direct HHS Secretary Thompson to write every other >Governor to make clear that any similar policy or practice >in any other State will not be tolerated and must be >reversed immediately. > >Contact Information: Address - The White House, 1600 >Pennsylvania Avenue, NW Washington, DC 20500. White House >Fax - 202-456-2461. The Public Comment Line - 202-456- >1111 or 202-456-6213 TYD/TDD only. E mail address: >[log in to unmask] > >Call or Write Bob Riley Today - Insist that he take >immediate executive action as the new Governor of Alabama >to reverse his State's policy of forced >institutionalization. > >Contact Information: State Capitol, 600 Dexter Ave., >Montgomery, AL 36130-2751. Phone: 334-242-7100. No >TTY/TDD numbers or e-mail addresses provided. > >Thank you. > >Bob Williams and Henry Claypool, Co Directors >Advancing Independence: Modernizing Medicare and Medicaid >Phone: 202-429-6810 E mail: [log in to unmask] > >================================ > >January 20, 2003 > >George W. Bush >President of the United States of America >The White House >1600 Pennsylvania Avenue, NW >Washington, DC 20500 > > >Dear Mr. President: > >We request your immediate assistance in preventing the >State of Alabama from unjustifiably institutionalizing and >segregating Nick Dupree and others like him in nursing >homes. We believe the facts of the situation will amply >demonstrate why your Administration must make it clear to >Alabama and other States that such conduct is an egregious >violation of the ADA that will not be tolerated by the >federal government anywhere in our great Nation. > >Mr. President, it is our deep honor to introduce you to a >young man very much in search of the promise of the >Americans with Disabilities Act: Nick Dupree like many >others his age is still living at home with his parents and >a brother while attending Spring Hill College in >Mobile. He has muscular dystrophy, uses a power >wheelchair, breathes with a ventilator, lives on the >Internet and maintains an A - GPA at college. As a major >in professional writing, Nick has been hoping to begin his >career at the Mobile Registrar and to someday move on to a >larger newspaper. Simply put, he's in a hurry to make >something of his life. > >But, all of these aspirations and the hard work it he and >his family have invested to in working to achieve them are >set to become the bitterest of dreams deferred on his 21st >birthday this February 23rd. The reasons for this are as >follows: Nick and his 18-year-old brother, who also has >muscular dystrophy, now receive the medically necessary >services they need to remain alive and to live in their own >home and community through the State's Medicaid >program. As you know, this is because under the federal >Medicaid EPSDT requirements Alabama like all States must >provide any child eligible for the program with whatever >medically necessary services they need until age 21. > >These days, however, Nick is dreading the thought of what >will happen to him on his 21st birthday on February >23rd. Because, unless something changes, Alabama Medicaid >will stop providing him most of the services he needs to >stay alive in his own home on that day. The State's >position is that because the EPSDT requirements will no >longer apply to Nick when he turns 21 that it can then >offer him the following untenable and discriminatory >ultimatum: The State Medicaid program will pay for just 12 >hours of assistance each week through its waiver program - >less than two hours a day. Something that State officials >obviously must recognize is ridiculously far too little to >offer him or anyone else with significant disabilities a >real alternative to being unjustifiably >institutionalized. Or, it will send him to a Louisiana >nursing home, 195 miles away. > >The distance in miles across two States to the nursing >homes, though, pales in comparison to how far removed this >fate would be to Nick's dreams: The active and productive >life and future that he has worked so diligently to achieve >and, which he knows otherwise would be well within his >grasp. Indeed, no one should be forced into a nursing >home at 21 or at any age merely for the administrative ease >and convenience of the State. > >Unfortunately, Nick's situation is hardly unique. Alabama >makes it a practice of institutionalizing young people with >significant disabilities simply for turning 21. In fact, >another young man it put in the same nursing home for its >own convenience died a short time later. By failing to >provide Nick Dupree and others like him with any real way >to avoid needless institutionalization, Alabama is not only >showing a wanton disregard for the law. It is also >sentencing them to die an early and undeserved social death >and perhaps even a physical death as well -- a life of >State sanctioned segregation and solitary confinement. It >is critical, therefore, that your Administration acts >swiftly to make clear to Alabama and other States that >practices like this violate core protections of the ADA and >the Medicaid statute and the federal government will not >permit them to continue. > >Absent your action we have no doubt Nick and many others >will soon be placed in permanent exile against their own >free will, the wishes of their families' and the conscience >of the American people. Some might scoff at this as >overly dramatic. The U.S. Supreme Court did not. In its >1999 decision in Olmstead v. L.C., the Court said: > >(the) unjustified institutional isolation of persons with >disabilities is a form of discrimination (that) reflects >two evident judgments. First, institutional placement of >persons who can handle and benefit from community settings >perpetuates unwarranted assumptions that persons so >isolated are incapable or unworthy of participating in >community life Second, confinement in an institution >severely diminishes the everyday life activities of >individuals, including family relations, social contacts, >work options, economic independence, educational >advancement, and cultural enrichment. -- Cites >omitted. See Olmstead v. L.C. (98-536). > >Based on this reasoning, it upheld the ADA's integration >mandate and ruled the law requires States to take every >reasonable step to avoid such "unjustified >institutionalization" of people with disabilities by >offering them services in the "the most integrated setting >appropriate to their needs". In practice, this means each >State must use its Medicaid and other funds to support >people with disabilities to live in the community rather >than in nursing homes or other institutions to the maximum >extent possible. To do this effectively, a State must >make certain that when a person leaves a nursing home that >the "the money follows the person." That is, Medicaid money >is moved from the nursing home budget over to the community >side of the ledger. > >In a situation like Nick's, it also means the State should >adopt a "community first" approach. That is, it should >spend a similar amount on providing him with community >living services, as it would devote to institutionalizing >him in a nursing home. Both the "money follows the >person" and the community first principles consistent with >past policy interpretations made by the U.S. Justice >Department in this regard, which we hope remain in force >under Attorney General Ashcroft as well. Based on what we >know, however, Alabama seems unwilling to accept or comply >with this commonsense principle of the ADA. > >Similarly, the Medicaid statute requires that all States >must provide two distinct types of long-term services to >anyone who is eligible for Medicaid and meets additional >"level of care" criteria set by the State. The first and >most well known of these is, of course, nursing home >services. Every State also must provide "for the >inclusion of home health services for any individual who, >under the State plan, is entitled to skilled nursing home >services." See section 1902(a)(13) of the Social Security >Act. Moreover, the legislative history of the benefit >demonstrates that - nearly 30 years prior to the ADA -- >when Congress added home health services as a mandatory >benefit to Medicaid in 1967, its did so to assure "the >availability of both nursing home and alternative >noninstitutional services". See the text of S. 1661, 90th >Cong. (1967). > >Clearly, in the 1980's when it created the Medicaid home >and community based services waiver authority, Congress' >intent again was to assure that any State that chooses to >offer these types of services through a 1915(c) waiver must >do so in a way that would both be cost effective and offer >a very real alternative to those who "but for the provision >of such services the individuals would require the level of >care provided in a hospital or a nursing facility or >intermediate care facility for the mentally retarded the >cost of which could be reimbursed under the State >plan." See section 1915(c) of the Medicaid statute. > >We have laid these facts out because when taken together we >believe they make a compelling case as to why the federal >government must intervene in this particular matter. In >doing this, it is equally crucial that your Administration >send a clear message to other States that such violations >of the ADA and federal Medicaid protections that occur >anywhere in our country will no longer go unnoticed or >unchecked by the federal government. > >For over two years, Nick and his allies have waged a >vigorous campaign over the Internet and in the halls of the >State Capitol in Montgomery to try to right this enormous >injustice. He has done this not just for himself but all >other young people like him, including his younger 18-year- >old brother with the same condition. Due to his efforts, a >bill was introduced last year in the State legislature that >would have required the State Medicaid program to continue >to provide young people with significant disabilities the >services they need to live in their >community. Unfortunately, the bill did not passed. > >But, no new legislation is needed for you and Governor >Riley to right this wrong. The Governor has the power to >direct that as a matter of State policy that the Alabama >Medicaid program should no longer force anyone into a >nursing home simply for turning twenty-one and must instead >continue to provide the services they need to live in their >own homes and communities. The State can do this by >expanding the hours of help it provides under its waiver >from 12 hours a week to a more realistic number. Or, it >can provide services to Nick and others through its >Medicaid home health benefit. As we pointed out, both the >mandatory Medicaid home health benefit and the 1915(c) >waiver program are meant to provide people with >disabilities of every age with a real alternative to a >nursing home. And, every State should be expected to see >that they do. > >Your Administration, sir, also has a duty to ensure that >all States comply with the ADA and the Olmstead >decision. Moreover, 71 cents of every dollar the Alabama >Medicaid program to forcefully institutionalize young >people like Nick Dupree comes from the federal >government. Hence, if the Administration does not help to >end this practice immediately, it will both become >complicit in it and fail to meet the federal government's >own obligation to avoid such discrimination under Section >5O4 of the Rehabilitation Act. > >Upon taking office, you pledged yourself and your >Administration to working to ensure an era of New Freedom >in which "all Americans with disabilities, whether young or >old, can participate more fully in the life of their >communities and of our country". More recently, in >commenting on Senator Lott's controversial remarks, you >also forcefully made the point that: "Every day our >nation was segregated was a day that America was unfaithful >to our founding ideals." Unfortunately, Mr. President, many >form of segregation still exist in our great Nation. And, >we respectfully and urgently request that you do all that >you can to put an end to this particularly pernicious form >of State and federally sanctioned segregation as it >persists to this day. Specifically, we ask that you >immediately: > >Personally contact and convince Governor Bob Riley to take >executive action to reverse his State's policy of the >unjustified institutionalization and segregation of people >with disabilities, whether young or old. > >Direct Attorney General John Ashcroft to take all necessary >action to fully enforce the civil rights of Nick Dupree and >others with disabilities in the nation to live in the >community with appropriate supports, free from unjustified >institutionalization. > >Direct HHS Secretary Tommy Thompson to write every other >Governor to make clear that any similar policy or practice >in any other State will not be tolerated and must be >reversed immediately. > >In closing, let us that emphasize we recognize that due to >the worsening economy and State budget crises, Governors >and State Legislature are being forced to make deeper and >deeper cuts in their Medicaid programs. We believe that >these policy makers are faced with Solomon like choices >that no American public servant should ever have to >make. We, therefore, strongly urge you to propose and/or >support legislation that would provide increased federal >funding for Medicaid, provided that States show how they >will fully comply with the ADA as well as other vital civil >rights and Medicaid protections. > >But, to paraphrase Dr. Martin Luther King, Jr. - federal >fiscal relief or not, State budget shortfalls or not -- we >can't wait for our ancient freedoms as Americans any >longer. Morally, America can't allow any of our young >people or those of any age to be unjustifiably >institutionalized. And, collectively, we believe that we >must be accountable for living up to the true intent and >letter of the ADA in full. > >Mr. President, we wish to thank you in advance for the >leadership that you and your Administration will hopefully >demonstrate in addressing these crucial human and civil >rights matters. Thank you very much. > > >Sincerely, > > >Bob Williams Henry Claypool >Co-Directors, AIMMM > ># # # > >===================== > >JUSTICE FOR ALL -- A Service of the >American Association of People with Disabilities >www.aapd-dc.org www.jfanow.org > >There's strength in numbers! Be a part of a national >coalition of people with disabilities and join AAPD today. >www.aapd-dc.org > > > > >===================================================================== > Justice-For-All FREE Subscriptions > To subscribe or unsubscribe, send mail to [log in to unmask] > with one or the other in the body of your message: > subscribe justice > unsubscribe justice > >