What's New/News:                                             Vol. 2, Issue 2

ADVOCACY NEWS

From a parent’s perspective...

As a parent back in 1982, I thought myself lucky to have two beautiful, healthy, bright children. I was then a teacher of deaf children and had been a teacher since 1975 with some brief time-outs to work for the Texas Commission for the Deaf and once to stay home nine months with my one-year-old son. On October 10, 1982, my children went to church with their paternal grandmother and the church blew-up. My whole world fell apart in the fraction of a second that it takes to try to light a heater. After intensive care, a lengthy hospital stay and a few surgeries, my children went home with full-time nursing care. My ten-year-old daughter was scarred and emotional traumatized. It took her years of counseling to recover emotionally, if indeed she has. My son will never recover fully. He has physical and mental scars and other health problems from which he will never escape. Thirty-one surgeries could not take care of everything. Counseling could not make my son whole. At nineteen, he is on the road to emotional recovery even if his body will be forever scarred. (For the record, he’s doing very well in college.)

My children’s biological father could not take the strain. We divorced. He seldom paid child support. That scenario is, unfortunately, not unusual.

Obviously, there is more to this story than you probably want to know so I will spare you. The point is only that I had to go through the entire Early Childhood to Adult Service Provider system with my son and I can tell you for the record--it’s not fun. If all goes well, it’s not fun. If the professionals involved are not organized then it is miserable. Had I wanted to sue the system at any time, in any year, I could have. I never did. I worked with it and did what I could. My son was a full-time job, and I worked full time often in several jobs to support his medical bills.

The other point you should take from this story is that healthy, bright children can become disabled overnight. Anyone, anytime, anywhere can become disabled. A car wreck, a playground injury, a stroke or other trauma can cause lasting, permanent disabilities. Maybe someone should explain that to the Fifth Circuit and the Texas Supreme Court Justices.

From a member of the system...

As a teacher, I saw many parental requests for adaptive equipment, special programs, etc. denied when I knew the district could provide them. I watched one director return money every year, pleased with herself that she was so efficient while deaf children did without supplies and books. In another district, I reported to my director that children were dying in one of our residential programs and was told that, "It is our job to provide the education. It is their job to provide the medical care." Thirteen children died in less than nine months. Was I quiet? No. Did I report the suspected abuse? Yes. Did people get fired? Yes. Would I ever get a promotion again? No.

I could tell you more horror stories and I probably will as time goes on. However, I think my point was made. It will take many, many people to change the system. I want to be one of them. I want to represent those people with disabilities who need someone to fight for them. That’s why I’m here.

To change the system, we need to know who represents us in Texas and in Washington.
If you want to know, get on Texas Legislature Online.  Find out whom to contact.  If you want to know what is happening in the school system, contact the Texas Education Agency.

Responses to E-Mails:

A gentleman by the name of Mr. Ron Roberts wrote to me about the Sunset Commission’s recommendation to consolidate all of the Long Term Care monies into one fund to be administered to needy individuals in any group (elderly, mentally retarded, mentally handicapped, physically challenged, etc.) The Association for Retarded Citizens (A.R.C.) opposes that recommendation. The writer wanted to know if I had any idea of why.

My response was: 

I finally got in touch with a lawyer I know from ARC, Denise Brady. Without talking to someone official, I hated to try to second-guess why ARC is opposed to the proposal. Denise explained that the advocates, friends, family, etc. of individuals with mental retardation and other related disabilities do not want the population to be lost in the process of combining all the agencies. She said that the elderly have better lobbies. Their numbers are greater. They have more political "pull". The individuals served by ARC who need long term care are already standing in line waiting with numbers to get services. ARC is very afraid of the consequences to their clientele if this proposal goes through.

Personally, I think their concerns are valid. If you are already in the back of the line in order of people who receive services, do you get pushed further back when other "needy" individuals with political muscle are competing for the same services?

Mr. Roberts took the other position and responded:

Attaining economy of scale through the coordination of service puts more money on the table for all to share. Attaining that same concept within the service delivery system under MHMR will produce similar results. The problem is that the system, possibly our culture does not value the possibilities of community programs, not to mention how they act toward people with disabilities. The management style and culture of MHMR is based in institution thought and concept and although I strongly support choice for families, the families who need service within the community are being left out. The recommendations proposed by the Sunset Report supports economical savings; it also provides links to established community programs. All of this could have very positive results. However, it appears that the fear of being lost in the shuffle is greater than the desire to work collectively to improve services for all. How much greater would our world be if we really did things that keep the family together. We are a strong lobby and being part of an aging population we have a vested interest to insure that we build systems that support community programs. Keeping the kid at home to me is no different than making room for grandma. They're both important. I think we should have called it "Family and Community Supports", instead of Long Term Care. The pieces seem to fit better under that name.

I read the Decision Material for Sunset and found myself in the minority relative to this issue. I wish someone would look at the numbers. If this consolidation produced only a 20% savings that savings would fund about 4000 HCS Slots and about $100,000 for new age medicine. If you do the math, I gave a little more to MR than to MH. After all, they've been first for a long time. MH...MR.

Thanks for responding to my e-mail. I'll check out your next newsletter.

Here's a link to our Assistive Technology Store.

Take care and God Bless!

It goes to show you that nothing is simple. Both arguments are worth serious consideration. Other thoughts?

Another lady wrote to me earlier in the month. I responded to her partially but, then my husband "reformatted" (crashed) my hard drive, so I could not finish my response to her. Hopefully, she will look again this month because here’s her story and the answer.

The woman has a disability that, at this time, is temporary. Later, her disability may become long-term. She wanted to know what would happen if she took a short-term leave now. Would that effect her ability to take a long-term leave later? She works for a school district.

Disclaimer: I am a law student. I have twenty years of experience in Texas schools BUT I am not a lawyer yet. The cost of my advice reflects what it is worth right now. Always talk to a lawyer before doing anything that could effect your career.

With that in mind, I suggested that she go to the district central office and look at the policy manual. That book is usually quite large and reflects the rules and regulations of every facet of district affairs. She needs to read about the leave policy. Each district is different. Then she needs to find out how much leave she has (state and local). Within those parameters, she needs to speak to an administrator about her particular disability and find out what the district allows.

I added that she needs to be very, very nice and cooperative because the courts are very, very much anti-disability and very pro-business at this time. (Those "verys" are there for a reason.)

She needs to find out more about the Family Medical Leave Act. Under that Act, the woman can take off a total of, I believe, 120 days. She can take that time off as she needs it and she has a right to keep her job or a similar position. (A lawyer could clarify the ins and outs of the law or she could research the law on the Internet.) Either way, she should be able to take the time off that she needs.

Of course, if the disability becomes chronic, the woman may need to look into long-term possibilities.

About the little nine-year-old girl with multiple disabilities who has been living with a family since the age of two but has not been legally adopted and is not a foster child. I researched the steps and had a local attorney check what I said for accuracy. If the biological parents’ whereabouts are known, the family with which the girl lives needs to get the parents to sign the legal paperwork for termination of parental rights that allows the girl to be adopted. Then the adoption proceeds as would any other adoption--through the State even if the little girl has never been part of the State system. It does not matter, an adult can adopt another adult.

If the parents are unknown and not able to be found, then the parents need to receive "constructive" notice of the pending adoption. The family with which the girl lives only has to publish a notice of the adoption in the newspaper near where the parents may live. After a given period of time to respond to the notice, the parents’ rights are terminated and the child can be adopted.

Take care.

Karen

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