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"ACTION ALERT!! Segregation and Institutionalization" - A Letter to the President of the United States

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.

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