Saturday, August 4, 2007

A Parent's Journey

I have experienced the world of learning disabilities and ADD as a sibling and daughter, though my mother and sister were not diagnosed until my sister and I were adults. I too, was diagnosed as an adult so my self-awareness and experiences were still through memories and adult experiences. I have been able to study and analyze this "world" as a teacher, an administrator and as a researcher and am now adding a new experience to this list, the journey of a parent.

I think I have mentioned before that my husband and I were starting this journey this summer and I am thankful for being able to further my perspective in this area, though I do worry about some of the aspects this will bring for my daughter in the future. But right now, I am simply working to gain the best understanding of how we can help her both in and out of school and to do this, we have turned to an excellent diagnostic center in our area - which means we have now begun the interactions with the insurance companies. So, I am thinking that I will log parts of our journey to possibly provide information and support for other parents.

Part one was "What Do We Do For Our Daughter" and part two, which we are in the middle of right now (though I would imagine we will frequently revisit part one) is "The Evaluation Process", which includes The Insurance Company.

The Insurance Company
This week, we received our "notification of unauthorized services" letter. Now, having dealt with many families who have gone through this process with private evaluations, I expected that we would be receiving such a letter and yet I continuously find it interesting (and appalling) that psychological testing is not considered medical - it is a psychologist, a doctor of psychological medicine, who is required for this testing . . . . So, we were not surprised to receive the letter and fully expected to be required to pay a portion of the fees. It turns out that we will be required to pay for 2.5 hours and the insurance company will pay for 2 hours. This may be better than some or worse than some, I really don't know. I just know that we were fortunate that we were able to find the money to cover our portion and will be able to pursue what we know to be best for our daughter.

As a professional however, I had some pretty strong feelings about the judgment used to support this action. I know that the health care industry is much larger than me and that this is "how it's always been done", however I was not satisfied with that and hope that others are not. I wrote this response, not really expecting much change in the judgment of my daughter's coverage but to possibly educate one more person or industry in the reality of learning differences. Perhaps this will also be of help to some of you:

The Letter
Dear Sir or Madam:
We have received the notification for ****’s psychological testing with **** and would like to request a copy of the written clinical criteria that are used to determine coverage. As a parent, I was not surprised at the decision and we had assumed that we would have some additional cost for pursuing this option for our child. As a professional in the field of learning disabilities however, I find this decision to be counterproductive.

Research is consistently proving that individuals with learning disabilities frequently develop medical/psychiatric conditions such as anxiety and depression, particularly when they are not “treated” appropriately as soon as possible. We pursued psychological testing for our daughter because she was already, at the age of 5, showing possible difficulties with language processing of some type which appeared to be creating much anxiety and was affecting her self-esteem. Knowing the serious problems that could develop as she grows older, we chose to pursue a comprehensive evaluation as soon as possible so we would be able to pursue appropriate treatment and support for her both in and out of school.

If ****’s anxiety were to continue unaddressed, as is the case for many who cannot afford the uncovered portion of psychological testing, she could easily require medication which would then be covered through our prescription coverage. At that point, it seems, we would be addressing a medical condition. Knowing that the cause is primarily a processing issue, it would follow that that processing is then connected to a medical necessity, not an educational choice; and, that this medical necessity of medication may have been avoided by treatment before it became such a necessity. As proper treatment as early as possible is the ideal option as well as being the least obtrusive, we have chosen to take this route with our daughter. We are also aware that this choice could save us quite a bit of money as she grows older, money that may have had to have been spent on psychological therapies, medication and support from other medical and educational professionals. In turn, this saves our insurance company money as well.

Working as a teacher and administrator in a school for student with learning disabilities and through my work with the Learning Disabilities Association of America, I realize how many families face the same issues we are now facing with our daughter. I know that there are many parents who are not able to pursue appropriate support for their child or who are forced financially to rely solely on the school systems for diagnosis and treatment; school systems which are often under-staffed and limited in the resources necessary to provide comprehensive evaluative services and treatment. Unfortunately, many of these children then develop further psychological issues such as we are attempting to avoid or at least minimize with our daughter. My husband and I realize that the debate regarding preventative care and reactive care is not a new one in the field of health care. We can only hope that it will possibly be resolved at a point that will better benefit our daughter and other individuals with possible learning or processing disabilities.

Sincerely,

6 comments:

Katherine Mercurio Gotthardt said...

Wow! That's a powerful letter, and so necessary. It IS ridiculous that mental and neurological health are treated differently from other health related issues. What is THAT all about? Isn't the brain part of the body? Or are we really headless and I just never noticed?

My insurance company actually did pay for the whole thing, but it can't be billed as academic testing (not sure what the different codes are, but one will get it paid and the other will not, and it's expensive as all hell).

My older daughter has ADHD which is how I came to recognize my own symptoms. There was a lot of "Hey! I do that!" going on when we went over the Conner's.

My younger daughter is learning disabled and does have anxiety. Makes perfect sense. How insurance companies get the liberty to separate these issues is beyond me. They must have better lobbyists.

ldtchr said...

I know that I have had parents who could have the whole thing covered as well,
but it wouldn't work primarily because of the center we used. Of course, they
are both neuropsychologists, but apparently the neuro part is not medical
enough or something.....

I know my testing was covered when I went, but it was for primarily ADD and by
that time depression, and I was an adult, so it could be nothing but medical at
that point - lucky for me I suppose. But, I decided to go in because through my
education program I kept learning more and more about ADD and other learning
differences and went, hmmmmmmm much more often than not and thought, yeah, that
would fit.

Thanks for your feedback and for sharing your journey. I'll be sure to be
checking back to your blog for updates and uplifters :).

marja said...

I was happy to find your blog and added it to my favourite blogs. Here in New Zealand learning disabilities are not recognised by the government so you have to pay everything yourself. Only Occupational therapy is covered.
You are so right that early intervention is extremely important. Many problems could be
prevented. I wish you all the best on your journey and will continue reading your blog.

ldtchr said...

I work with the Learning Disabilities Association of America and have belonged to the International Dyslexia Association and have always been amazed at the variety worldwide in the identification and support for learning disabilities. With so much good research coming from countries other than the US including research in educational practices, we can only hope that support for these individuals will follow.

Thanks for checking out my blog and good luck on your own journey!

Anonymous said...

Amy,

Very impressive!! Keep up the good work.

Love ya,

Mom

The People History said...

I wonder sometimes at our world we live in, the measurement of how civilised a society is the way we help those in our society who need support , not those who have the biggest entertainment budget and are close to the main seat of government or who help fund political campaigns

as usual I am always happy to visit and read your blog which helps me understand the issues behind learning disabilities better

steve