On Tuesday, we attended the Down Syndrome of Clarksville Group meeting. Suzie Mohler of Progressive Directions was the guest speaker. (Their mission is to serve the people of Montgomery and Stewart Counties, acting in the public interest by providing mental retardation services to the area.)
She informed the families about the opportunities available for children with special needs from birth to 3 years of age. During this time Tennessee Early Intervention System (TEIS) also coordinates for the child and assists in arranging needed services such as Physical, Occupational and Speech Therapy, many of which are brought into the home setting.
Abbigail participated in both of these programs until she was 3, since then we as well as other families have had to navigate through the private insurance sea of red tape alone. Did you know that some insurance companies still deny benefits to children with genetic related disabilities or developmental delays because it is not caused by an injury?
We, as well as other families that spoke during the meeting, received notices of denial from the insurance companies that stated the benefits were denied and not covered because the delays and necessary therapy was not caused by an accident. Had it not been for the TennCare that Abbigail receives, she would not be able to attend these therapies, although we have insurance through our employer, the co-pay and deductible each year would cause an extreme hardship financially.
With that said, there are also few services, or benefits available for children ages 3 to 18 except through the school system if a parent can not afford outside services. There are children in our group that fall into this age group and their assistance has dwindled. These families like us rely on our own research and word of mouth to keep up with what is available for Abbigail.
What about the school system, what benefits can the school system offer? Right now, once we finished Abbigail’s IEP (individual education plan) she will received one hour a week of speech therapy, and one hour of occupational therapy, and no physical therapy from the school. This instruction is included in her daily school activities, removing her from the classroom for this time.
As a parent, I want Abbigail to have all the classroom time possible, I don’t want her to miss class. I want her to be included and encouraged to excel to her full potential. I am afraid that with the limited school staff and the budget cuts of the school systems, she could suffer the consequences of lack of support and the lack of time and skill to keep her in a normal inclusive classroom.
Another issue that was discussed during the meeting was the fact that not all of the children are insured. When asked what these parents are doing, most of them replied “the best we can.”
There is no reason a child should go without insurance and receive the benefits that can improve their potential and help them become more productive as adults. If these children are allowed to be overlooked, they will not have the tools necessary to be self-sufficient as adults.
I realize that when our children reach adulthood they may never be able to live alone and to be completely self sufficient, but without help, without giving them the greatest potential to reach success, they will have been sacrificed by our economy and our government. We can not allow this; all children must be given the best possible opportunity to succeed to their highest potential.
- Rita
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