December 30, 1999

Mr. Eric M. Bost
Commissioner of Human Services
P. O. Box 149030
Austin, TX 78714

Re: Services for XXXXX

Dear Mr. Bost:

As I sat down to draft this letter, the news story of the Pennsylvania couple, the Kelsos, who left their disabled 10-year old son back at a hospital, only to have charges of abandonment and conspiracy brought against them, is fresh on my mind. You will never know how many times I have entertained thoughts of doing the same thing !!! As a single, unemployed parent of a 17-year old girl with Prader-Willi Syndrome (a named developmental disability/'related condition' under both Texas and Federal laws), I have been tempted to take her back to the hospital where she was born and leave her there with a note saying, "I received damaged goods and I'm hereby returning them to you !!!".

For over two years, I have attempted to get services for this child through MHMR without ANY real success. Initially, I only wanted some respite care -- short-term support so I could have a much needed break and temporary relief from the very real and ever-present emotional (and physical) demands of this syndrome. Instead of coming through with respite care, which would have cost the State only a few hundred dollars, I ended up placing the child in a psychiatric hospital for nine (9) days, which cost a couple of thousand dollars in Medicaid funds.

Now, the time has come to find placement for her in a residential facility that is better equipped (and paid) to provide supervision and care for her. The "wait" list in Texas, which is somewhere between ten and 66 years long for services, with some 10,000 to 30,000 names on it, is not acceptable!

Your name was given to me by John Cunningham, in Tucson, Arizona -- he is affiliated with a concern that offers sheltered living resources, particularly for persons who have Prader-Willi Syndrome, in a much more economical and timely fashion than is currently the case in Texas. I would appreciate it if you would have someone on your staff work with me and other concerned parents to effect a similar type of arrangement to speed up the provision of housing, at least to our client population which is some 1,200 to 1,500 Texans with PWS.

While I do not think litigation is the best way to effect change in Texas, I am privy to the lawsuits that have been brought in other states to withhold Medicaid funds for unduly long "wait" lists. Enclosed is my letter accompanying my complaint, filed with the U.S. Justice Dept., Civil Right Division, Disability Rights Section.

I feel strongly that the public servants in Texas need to listen to parents and advocates for the disabled MORE, and work with US to rectify the situation in this State. Without more, and more OPEN, honest communication, you people are like the deaf person trying to give piano lessons -- you don't have a clue if scales are being played in one octave or four, in a major or minor key! You seem to have very little grounding in the realities of what it is like to try and care for a disabled child, what is needed and required, OR just how difficult it really is to obtain services under the status quo!

We don't have a Martin Luther King advocating for the Civil Rights of the disabled, the hungry and the homeless in Texas -- but we need one!

By MY calculations, a small group home could easily be established for persons with PWS, at cost of ONLY $3,320.00 per month, for six girls, assuming they received around $400.00 in SSI and 70% of that went toward their care and upkeep. This includes 24/7 staffing at $6.00/hour, $l50.00/month in utilities, and $450.00/month in food, and $50.00 a month in insurance or a cost of around $553.00 each to the State to kick in. Even if a home supervisor's salary and/or rent/lease were added, the cost per capita would be less than $l,280.00 per month. This is less than half the going rate for an IC-FMR or nursing home care, which persons with PWS qualify for and which does NOT meet their needs!

It is a sad day, in a supposedly free America, when people are afraid to speak out and tell the truth for fear of retribution from those in "power" -- e.g. workers in the long-term care industry who fear for their jobs when asked to testify less they "offend" the regulators with perceived criticism, i.e. telling THE TRUTH! It's high time Texas woke up, got real and got honest and got serious about positive change !!!

Yours truly,