An open letter to the House Appropriations Committee – ND Legislature

Chairman, Members of the Committee.

I am writing this here, because I can’t make it today to testify in person.  I believe in the citizen legislature.  I have to believe that you will read these words.

My family adopted a special needs child from our state.  When the adoption was finalized, he was court ordered to be under Medicaid until he reached age 18.   We have learned that this can mean a lot of things.  We have  had medicaid coverage turned off, had to pay a recipient liability of 954 dollars a month, and been told that there is nothing more that can be done for our son.

A quick bit of history, at the end, I will post some links to relevant sections of this blog, although if you have time, I highly recommend that you start at the home page.  The blog itself is a record of our attempting to get services for our son, for our family.

David has spent more than 2 years in a series of residential facilities.  He has a number of diagnoses, the least of which is Autism.

Medicaid in their infinite wisdom decided that after 12 months, since David wasn’t making progress, he should be sent home.  While we were informed on a Friday that it was a possibility for a denial of coverage, we appealed the decision.  The following Friday we were given 72 hours to retrieve our son from care.  We asked for transition care.  That too was denied.  This was in January of 2015.

Since the denial of continued care, we have established, on our own, an education plan.  Began development of a psychiatric plan, and we have survived.   My wife and I have 5 children.  Only one is adopted.  All three of our boys have Autism at some level, only one has Autism to an extent where hospitalization has been a key component of his treatment.

Davids behaviors are increasing again.  Our struggles are deepening, and quite frankly we feel that our whole family is being made to suffer because of the lack of appropriate services in our state.

Our providers should be able to provide the care required by the child up to and including maintaining status quo even though no change has been noted in the behaviors of the child.  Our providers, where available, including the out of state providers like our son David had, should not have to worry about denial of coverage where it can be proven that continued coverage is necessary and right.

I welcome the committee to review these blog posts:

Irrational Beliefs
Crisis Mode – Treatment Setback
72 hours and a prayer

In the last 2 months, we have seen ebbs and flows in the behavior our son exhibits.  Not ever day is bad.  But the bad days are very bad.  And there is no respite.   Today, we have no idea what he will be like 15 minutes from now, let alone tomorrow or even later this afternoon.

Please.  Help us help our son.  Our family.

Carl Young
Garrison, ND 58540