Sunday, November 06, 2011

An open letter to Senator Colgan

...And any other politician who would like to acquire my vote. I have written to Senator Colgan, Congressman Jerry Connolly, and Delegate Luke Torian, both of whom are on the ballot this year.

For the record, Senator Colgan is the only one who has not responded in any fashion (other than to leave me a pre-recorded message to remind me to vote for him on election day).

Senator Colgan,

We are writing to you today to ask for your assistance with a serious matter my family is facing. We have been residents of Virginia since 2004. My husband and I have two children; Cecilia, aged 5, and Lucas, aged 3. Our problem is with the medical care for Lucas, who has been diagnosed with Ehlers-Danlos Syndrome late last year and most recently been diagnosed with autism. He has global developmental delays, and currently wears leg braces on both legs. He uses a pediatric medical walker for longer distances. His afflictions are treatable, and with properly managed care he can live a fairly normal life. We want desperately to give him that chance.

Currently, our whole family is covered under an insurance policy provided by my husbands employer. This policy provides for 40 therapy sessions each calendar year for physical and occupational therapy combined. As of this date we have already exhausted our therapy sessions allotted for 2011. Lucas attends various therapy sessions each week now at a cost to us of over $400 per week. This is not a situation that will be resolved once the new policy year begins, it will just repeat, as Lucas will require such treatment for the foreseeable future. As with many childhood disorders, early and aggressive treatment of autism, and the many debilitating conditions associated with it, is paramount to successfully allowing the child to live a normal life. To not provide this care is to condemn him to life we don’t really want to consider. Ongoing physical therapy is essential to strengthen his muscles and protect his fragile joints and connective tissue from a lifetime of painful dislocations and subluxations.

My husbands employer has provided a very generous insurance policy for their employees and their families. However, in our case we are experiencing some severe medical costs. Recognizing the special nature of autism and the need for extended therapy sessions, the State of Virginia mandates publicly offered insurance policies to provide unlimited habilitation therapy sessions for a diagnosis of autism, regardless of what other session limits may apply to other diagnoses. Unfortunately, MITRE has negotiated a self-funded contract with Aetna Insurance, which places a cap at 40 sessions, with no possibility to appeal for more visits.

We have been working with the Human Resources department and with our insurance company to try to work out a solution. Although we all agree that there is a need for assistance, we have been told that it is not possible to cover these costs through the policy. We have received, and continue to receive, some benefits from state and county organizations, but it does not fill the gap. Lucas has aged out of the county PIE program, and is on the wait list to be evaluated by the public school system. They hope to be able to evaluate him before the close of 2011. The ARC, Easter Seals, Autism Speaks, and United Healthcare Childrens’ Foundation have all been very helpful so far, but none have been able to help us with a solution to the insurance coverage issues. We have been denied by Social Security due to income requirements.

We are respectfully asking for your help in several ways. While we understand that healthcare issues are a very heavy issues for politicians, we ask that you take a stand for the special needs citizens of Virginia, and help fill the gaps of the current situation.

If the mandate would encompass all insurance policies, rather than just those that are publicly funded, then all children would be able to receive the services that they need and deserve. We know that ours is not a unique case, and that there are countless other families struggling in the same way we are. Given the seriousness and prevalence of Autism and Autism Spectrum Disorders, we firmly believe that changing the provisions of the mandate would be tremendously beneficial to the children in our state.


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