I did a little write up for tonight so I have something to work from. I doubt it is typo free, but right now I am more concerned in getting my presentation together and making my management final typo free to worry too much... Why does everything happen at once?
My name is Rachel Kirkland. I am a constituent from here in Manassas Park, Virginia and a state employee at George Mason University in Fairfax. This young man with me is Jimmy Kirkland. My son is four years old and was diagnosed with PDD-NOS, a disorder on the autism spectrum, in April 2005, after several years of concerns being expressed to our health providers at Kaiser Permanente. At the time Jimmy was diagnosed by the neurologist from Children’s Hospital in April, she recommended a treatment plan of occupational therapy as well as intensive speech therapy. Our pediatrician concurred with her recommendation and put forward referrals for approval by Kaiser. Kaiser approved a mere twelve sessions of speech therapy and denied the occupational therapy entirely. When I looked into appealing the decision on the occupational therapy, I found that I would likely have little success. The contract that the Commonwealth of Virginia has for state employees provides for occupational therapy in cases of rehabilitation only – when a patient has had skills previously and lost them due to illness or injury. OT, in this case, is considered habilitative in that it would assist Jimmy in acquiring skills he does not already have. As a result Kaiser will not cover it, regardless of the recommendations of the neurologist who diagnosed him with autism or their own physician, who concurred with the findings of the neurologist.
Not wishing to seem ungrateful for what is covered, twelve sessions of speech therapy at a half an hour a session for a four year old that is just starting to develop language is woefully inadequate. In reality, even though the referral has been approved, Kaiser deals with only one speech center in Northern Virginia, an hour away from our home in Manassas Park. We have been on their waiting list for several months now just to get a slot on their schedule. Some at Kaiser have suggested to me that helping Jimmy is role of the school system, that systems like ChildFind exist to provide help to these children. Jimmy has been attending Cougar Elementary School’s Early Childhood Special Education preschool class since January 2004, when he started the program at age 2½. While I look at these teachers with awe at what they have been able to accomplish with my son, the reality is that children like Jimmy need one-on-one care and therapy to gain the skills they need to function in the world, to overcome this medical diagnosis on the autism spectrum. No one would ask a teacher to set a broken leg, perform brain surgery, or teach someone with a spinal injury how to walk. Leaving these medical and therapeutic functions to educators is wildly inappropriate. Special education should supplement medical and therapeutic care for children like my son, not serve as a replacement for it.
We have contracted with the Matthew Center in Manassas for additional therapy for our child. We pay for 2-4 hours a week of intensive in-home services, receiving a 30% discount. The therapist delivers speech and social therapy to Jimmy at his daycare center. After an assessment of his level of function and his progress, she recommended ten hours a week of therapy for my son. Financially, I am stretching to pay the two to four hours a week I have her deliver, running up credit card debt to free up the cash to provide the most basic therapeutic care my son needs. Doing intensive therapies that Jimmy could really benefit from like ABA (Applied Behavior Analysis) is out of the questions because of the lack of funds and insurance coverage. When you are looking at your life and realize that you child has needs that you are unable to meet, it is heartbreaking. It is an enormous stress on parents, families, and the larger community. I believe and love this child more than anything in the world and his future is big question mark because I can’t get the care he needs now. Since his is a medical diagnosis, these services should be covered in the same manner as his visits to his regular doctor or specialist. There shouldn’t be a distinction in habilitative versus rehabilitative therapy – therapy recommended by a doctor should be provided and covered, period.
Stronger laws are needed to force insurers to provide needed care for children with the medical diagnoses that fall under the umbrella of the autism spectrum disorders. I would like to see a bill like Ken Plum’s bill from last year, forcing insurers to cover habilitative services such as OT, Speech Therapy, and ABA for all children with a diagnosis on the autism spectrum. It should be part of any insurance coverage, not an additional rider to be paid for by Virginia families. No one would dream of asking for this from someone whose policy included someone with chronic condition like asthma. Last year’s SB1049 asked for coverage be provided in these areas until the age of five. My son’s needs aren’t going to go away at age five. Kaiser refused to write a referral to have his developmental delays assessed by a specialist until the age of the three. It was a four month wait for an appointment, who deferred diagnosis for another six months. It took me eight months to get into see a developmental pediatrician. Hopefully, you are beginning to see the problem with setting a limit to coverage for under the age of five – nothing in the world of autism happens quickly, ever.
Habilitative care and therapy for all children with autism should be provide and covered by insurers in Virginia. It is a benefit not only to children like my son and families like mine, but to all taxpayers in Virginia. By making the investment now in these children, allowing them to receive the medical care and therapies they need, can they achieve the basic functioning that the rest of us are fortunate enough to take for granted. Through this investment, children like my son can go on to become taxpaying citizens rather than draining resources through disability payments. I think the General Assembly and the Governor need to establish a task force to look at all aspects and considerations of autism – financial, social, educational, and medical. Autism has no know cause or cure and a growing number of children being diagnosed. Simply put, everyone needs to more to ensure these children have the best possible future.
Thank you.
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