put a face

To bring it home, the following are comments by both people who have disabilities, and those who care for them:

"It's like living in a prison, inside my own body, because I can't do the things a normal teenager can do. You try and be a part of something like the Senior Trip but you don't fit in. You can't drive a car or do a lot of things for yourself that most kids take for granted."

"I want to fit in but kids won't accept me. It's hard to make friends . When you try and make friends, people look at you like yu are some sort of alien and that hurts my feelings, a lot."

"It would be nice to have a cure for Prader-Willi Syndrome because it is so traumatizing to the kid that has it because they see a lot of people doing things they can't do. And, besides, it causes you to be unhappy."
-- Teenager with Prader-Willi Syndrome

"Living with a teenager who has Prader-Willi Syndrome is like living in a war-zone. I feel like someone with 'post-traumatic stress syndrome' only there's no 'post' to it. There is never any permanent peace -- just a lull between rounds of shelling!

"My l7-y.o. daughter is about age 10 in social skills, and tantrums like a two year old, anywhere, anytime. I have to be "on guard" constantly when we are out in public, that she doesn't sneak or steal food. There's never any rest or let-up from the stress."

"Her behaviours often include being very willful, hostile, angry, childish and immature, bellegerant, destructive, tearful, moody, defensive, hateful, controlling, lacking spontaniety, depressive, sullen, withdrawn, manipulative, disobedient, resentful and jealous, defiant, disruptive, surly, mean-spirited, perserverative, NO impulse control, paranoid, judgmental and distrustful of whose who would help her, dictatorial, negative and irritable. And this is only the short list!

"If I had a mate who exhibited these qualities, he'd be divorced in a New York minute -- but I can't "divorce" my child, nor can I turn her over to a State that is ignorant of and unresponsive to her challenges and proper management!"
-- Single Mother/Parent to child with Prader-Willi

"I recently read information about the upcoming execution of a man on death row in Texas with mental retardation. I believe he will be executed (killed) on Jan 13th. He already had a stay as a result of intervention by the Pope."

NOTE: HB 245 (Gallego/Ellis), ostensibly passed since it was to become effective 9/1/99, prohibits the state from executing a person sentenced to death if the person is mentally incompetent, and this bill establishes a procedure to determine the person's level of mental competency. So HOW COME this dude is scheduled for execution 1-13-00? Is this yet another example of our Gov. selecting just which STATE laws he wishes to enforce -- he obviously chooses and picks which FEDERAL laws he feels like implementing!

"I also had just had a long discussion with my daughter about the homeless, after an incident with a homeless man at her day program. The majority of the homeless are suffering from the results of alcohol exposure in the womb, either Fetal Alcohol Syndrome (FAS) or Alcohol Related Neurological Disorders (ARND)."

"I wanted to find some good sources for you about this for your homelessness section, but was interrupted by a phone call from a parent of a child with FAS who at age 6 it has been discovered has been repeatedly sexually abused by his step-brother at his Dad's house."

"While on this phone call, I received a call-waiting call from a foster mother (friend of mine) who is successfully maintaining a high quality of life for a young man with PWS. It seems my friend has the state coming down on her for locking up his food and for doing room searches and body searches (done with the utmost respect and as unobtrusive as possible)."

"She needs some documentation that this is not only allowed but necessary to keep this young man healthy. So I spent the next several hours researching that issue with only vague references. So now I have to spend my New Year's Holiday researching and writing a position paper for our disability advocacy organization."

"Heck, we never do anything fun anymore because I have become a slave to my causes (advocating here in much the same way you are wanting to there in Texas)."
-- Disability Advocate in another state

The following are comments from those who work in homes and programs serving the disabled in Texas. Many are "anonymous" because they fear for their jobs and/or retaliation from the State of Texas if they spoke out more openly.

"Arizona believs and supports a consumer driven system that supports choices for families. Sounds like Texas doesn't offer much in the way of choice. We have money problems here, too, but it sounds like we are able to negotiate with more latitude than the state of Texas is willing to give you."
-- employee of sheltered living facilities in Arizona

In re: the Kelso couple who left their disabled 10-y.o. son in a Delaware hospital and had charges of abandonment and conspiracy brought against them:

"Funny how the media never talked about whether or not the family was getting any type of assistance. And you bet that with their income, they probably got no help whatsoever. If they had nurses around the clock 24-7 from a Home Health agency, you are talking about $25 - $50 an hour. Even at $25/hour, you are looking at $600 a day for nursing services."

"I think these parents were desperate. The way the media crucifies people is sickening. Until you have walked in the shoes, don't make assumptions and don't ever judge."

"The child's medical condition sounds delicate and demanding -- quite involved -- if his condition had worsened through improper care, the parents would be held accountable in a court of law. At least they took him to a hospital where he could receive proper care for his condition."

"I say get Rosie or Oprah to delve into the REAL story here. No support, no services, no empathy, NO wonder! Desperate times call for desperate measures."
-- from an source wishing to remain unidentified

In re: the alleged addition of 590 new "slots" in Texas to afford care for the disabled:

"Just consider that adding 590 slots may not be the actual number of slots. What we are hearing is that only 49 slots are going to the comjmunity (HCS) waiting list. I am not sure of an exact number being allocated for the state schools, but it is probably less than 551."

"You need to keep in mind that MHMR/TDHS requested an amount substantially less fromthe Senate Appropriations Committee due to some error of calculation on their part!"

"... cutting community service funds and cutting funds for new generation medication to balance the deficit is a killer. And these people who are making these errors are in charge... scares me."
-- sources wishes to remain anonymous

Jake (not his real name) has quite a personal story. He currently weighs 160 lbs. When he came to us back in 19XX, when we rescued him from a nursing home (and he was in his early twenties at that time), he weighed close to 400 pounds. He could hardly walk. His diabetes was totally out of control. He was on 17 different medications. He was essentially dying in that nursing home.

I knew Jake before we opened this home and he had been in another group home when he got on our waiting list. He was on our waiting list for three years.

Inconveniently, when we were originally opening (the new group home) the state decided to put a hold on approved group home applications as they approved more homes than funding could support. So the state decided to only certify 2 group homes a month and stopped accepting applications for new group homes.

It took two years for (the new group home) to finally get on their schedule to be certified so that we could open it. In that time, Jake lost both his parents, his advocates. The (prior) group home he was in was not taking the necessary measures to meet his needs.

He fell into a grave depression and displayed behaviors accordingly and at the same time his health needs were not be met either as his health became very unstable. All this led to the (prior) group home discharging him to a nursing home.

When we finally got (new group home) certified, we had been searching for Jake for 6 months as he just seemed to have fallen off the face of the earth and the group home he had been with were of no help as they had new staff that did not know where Jake was sent to.

MHMR was supposed to be keeping track of Jake and his situation. They had a hard time getting us the information as to his whereabouts - but they finally got us the info.

When we went to go pick him up, he was in the worst shape and seemed to have the mind set that he had been sent to the nursing home to die.

To you, Jake might not look skinny, but to me, his is skinny mini, he is a role model (for someone with Prader-Willi Syndrome who was allowed to get out of control and then later managed properly) for perserverance, he is success, he is a miracle of God in the flesh.

Not only has he lost a tremendous amount of weight, but his
diabetes is essentially in remission and controlled by diet alone. I look at him in awe sometimes."

Note: People with PWS metabolize (burn up or use) only about 60% of the calories they take in, need to be restricted to around 1,200 cal/day for optimal health and, because of hypotonia (low muscle tone) are not robust and athletic. Yet, due to a defect in their master glands, they always have the sensation of being hungry or "starved". A double whammy and a difficult syndrome/disability to manage.

Late December, in re: all the new "slots" being created in Texas for housing the disabled:

"I have some not so good news. Off the press today, the state that supposedly had all this funding for new HCS slots and received money from the tobacco settlement for hcs slots, announced that only 46 slots state wide will be used for individuals on the community waiting list and that the rest of the slots would be allocated to individuals in state schools."

"What does this mean? Previously we had been told that XXX County would be getting 150 community slots. Now it is 46 statewide?"
-- source wishes to remain anonymous (but it seems the state gives publically and then takes away privately, services to the disabled)