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U.S. Dept. of Justice Re: HCS Services for ______, et al Dear People: This letter is submitted as an attachment to my Title II Complaint Form, enclosed. It is my contention that the State of Texas and Texas Department of Mental Health and Mental Retardation (MHMR) are in direct violation of the U.S. Supreme Court ruling passed down July 22, 1999, in Olmstead v. L.C. & E.W., the Integration Mandate spelled out in the Americans with Disabilities Act (ADA), the "reasonable promptness clause" (Section 1396 (a) (8) AND Section 504, freedom of choice claims in the Medicaid Act, which should be enforced under section 1986 of the Civil Rights Act, as well as the 14th Amendment (equal protection) in both the range of services provided and the lack of a timely fashion in which these may be obtained to disabled Texans. I am a single parent to a l7-year old daughter who has Prader-Willi
Syndrome and efforts were commenced in February, 1998, to obtain services for her, via our
closest MHMR center in ________ TX. MHMR also advised that my child qualified for placement in a "HCS" or less restrictive sheltered living environment, even at home, but they did not offer to facilitate my child's name being placed on the HCS wait list. Just recently, this month, and after being told by a representative of a private business which operates IC-FMR homes that I should get my child's name on the HCS list, it took from Dec. 2 to Dec. 20, three phone calls and two letters before I was told, verbally, this was accomplished. My child is now supposedly number 132 on the HCS "wait" list, I suppose for this region of Texas. In 1999, there was NO movement on that list and only two slots opened up in 1998; i.e., at this rate of progression, it will be a SIXTY-SIX YEAR LONG WAIT for HCS placement for my child. She would be age 83 and I would be 122 years old at that time !!! THIS IS NOT ACCEPTABLE !!! According to whose data you use, the 'wait list' for community based services in Texas is 10,000 (per MHMR) to 30,000 (per Liberty Resources). The Community Based Alternative, which allows people eligible for nursing homes to get the services at home instead, has been closed since last September with over 7,000 people waiting. They will compete for the 3,900 CBA slots opening up in 2000. Still, ONLY 590 new HCS slots were created in the last State budget. This will allow 5,440 clients to be served, vs. 4,850 in 1999, still leaving 10,000 to 30,000 in need! This does NOT result a "short wait" for a community bed to become available and the disabled in Texas do NOT have a waiting list that moves at a reasonable pace, as mandated by Olmstead. Moreover, suits have been filed in other states, on behalf of shorter wait lists (three years) and smaller populations (3,000 in N.M., Lewis v. New Mexico Dept. of Health), to bring prompt relief. Only 700 persons in Pennsylvania obtained a Home and Community Based Waiver; we need a voice for the 10,000-plus disabled in Texas. As for placements taking into account the resources available to the State and needs of all who have mental disabilities, this State received some $28 Billion in Federal funds for the 2000-2001 budget (which is some $91-96 Billion dollars !!!). I'd like to see more of this used for people with disabilities! ... and in more cost-effective ways. After eight months of asking for respite care (at a cost of a few hundred dollars for a couple of weekend's relief) from MHMR with my very trying child, and being refused, several thousand Medicaid dollars were spent for her to have a nine (9) day stay at a psychiatric hospital, which I managed to arrange. This was a WASTE of taxpayer's monies! The medication she was placed on at that hospital, to quell rage and aggression, could and should have been prescribed by the psychiatrist on contract with our MHMR center, but he refused to treat or see my child! Warehousing disabled and retarded people in nursing homes is, in many cases, not only discriminatory and wasteful -- it can be life-threatening and deadly. One young man with PWS in Texas went into a nursing home in his twenties when his elderly parents died; there, he was allowed to gain weight up to 400 lbs. and have out-of-control diabetes. I do NOT want this happening to my child! We need to see a compliance plan, NOW, to eliminate waiting lists and establish reasonable time frames for services in this State, with the input of and communication with persons afflicted and affected! Additionally, the financial and emotional costs of caring for a disabled family member needs to be addressed better. The median income in Texas, 1996-1998, was $35,254.00. The poverty threshold in 1998 for a family of two, under age 65, was $l0,972.00. My income has hovered at around $6,500.00 for the past l5 years, due to caring for my handicapped child !!! And I hold two college degrees and have an excellent professional background! Then, there's the "Tobacco Settlement". Texas is on the receiving end of some $1.8 BILLION dollars but ONLY $265.6 million has been allocated in the Governor's proposed budget for 2000-2001 (for Health and Human Services and the Dept. of MHMR) and $471 million set aside for a "rainy day". WHERE is the other $1+ Billion going and why can't it be used to rectify the sorry state of the disabled in this State with it's $96.4 Billion dollar budget! Additionally, there's another $l.1 Billion, in Tobacco Settlement funds, to be forthcoming in "each subsequent biennium", which COULD be used to sustain program initiatives for the disabled, or so it would seem to this untrained mind! If I were not related to my child, and the State had to pay me to care for this disabled person, at a rate of $60.00/day, they would owe me some $459,000.00 in back pay for my efforts! In closing, I don't think that filing lawsuits are the most cost-effective or expedient answer to this dilemma for the disabled in Texas. I would sincerely hope that pressure and mediation brought through your Department could serve as both a wake-up call and a shake-up for the way Federal Medicaid funds are utilized (or wasted) in Texas and facilitate better, swifter and more equitable provision of services! It is TIME for Texas to obey Federal law and Supreme Court mandates! Yours truly, enclosures cc: State Sen. Frank Madla [Top] [Back to Letters] [Home]
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Advocate F