What's New/News: Vol. 2, Issue 2
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.
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:
Mr. Roberts took the other position and responded:
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.
| Please let me know your thoughts and opinions. Feel free to ask questions. I will research your answer, if I don’t know it, and get back with you. Please keep me informed about anything new happening in the field and I promise to share what I can with you.