Thursday, July 17, 2008

90 more days

Ugh. I got some frustrating news yesterday that has prompted this grumbly post.

When Jayce turned 3 years old, he no longer qualified for the state's Early Intervention program. The good news is that when he received his High Functioning Autism diagnosis, he became DDSN eligible. (DDSN stands for the Department of Disabilities and Special Needs). However, DDSN doesn't really do squat for us. Okay, so that's not fair. They pay for our EI coordinator to come out to our house once a week. We also just got approved for 12 hours of respite care paid for a month (at the huge rate of $5, lets all roll our eyes together). They declined to pay for our diapers and wipes because supposedly Brian brings home more money than we spend (so, we are getting punished because we don't have loads of debt?). Anyway, long story short, DDSN does NOT pay for private therapy.

When a child with special needs turns 3 in the state of South Carolina, it is now the public school system's job to pick up where services leave off. After a huge long fight, Jayce now qualifies for both Speech Therapy and Occupational Therapy (Sensory Integration Therapy included) at the school along with special instruction in their Preschool Child with Disabilities classroom. Except that Jayce turned 3 on April 28th, so by the time we got processed through the school district, there was only 2 days left of school. And the school system does not believe it to be important to continue THERAPIES through the summer. Believe me, if I had money, power, and influence, that would be the first thing I change about their stupid system!

So, here's a recap. When Jayce turned 3, we lost state funding for private therapy that we were getting at the local hospital. And it was summer so school wasn't going to help us. And DDSN doesn't pay for therapy. The end result of all this is that Jayce had to take a break from therapy this entire summer.

Oh, we could have still sent him to the hospital for private therapy. At $1,000 a WEEK. I'm not kidding. And this is only for 4 hours of therapy! Even full time ABA therapy is the same price! And for some parents, I can totally understand justifying going into debt and taking out second mortgages for the sake of your son's future. But Brian and I agreed that dropping all that money right now doesn't feel right to us. Maybe its because Jayce is very high functioning and the whole "autism" thing doesn't seem so much like a burden anymore. Or maybe its because I felt like I could help him a lot here at home this summer. At any rate, we chose to stop therapy when Babynet stopped paying for it.

We applied for something called TEFRA as soon as we got Jayce's official medical diagnosis. Its a supplemental insurance for special need kids and its funded through our govt's medicaid program. Its very hard to get. Jayce has to be approved 4 times by four different groups. We were told to submit absolutely everything we had on Jayce. Every evaluation, every medical record, every IEP, every IFSP review, everything. It took me 3 weeks to compile copies of everything. I was told by countless people that the TEFRA application process took 90 days to complete.

We are currently 60 days into our application.

I received a returned phone call from my TEFRA medicaid caseworker. It only took me calling her 3 times and leaving 3 voicemails for her to return my call.

She gave me the good news first: "Jayce has met the level of care part of the TEFRA application. Now its up to the 2nd agency to determine whether or not his autism is a disability".

"It will take another 90 days for that process".

Great. Just when I thought we were 4 weeks away from heading back to the hospital for therapy, they drop that bombshell. Oh, but it gets better. Our new (actually, our former who returned just now) EIC told me that its not uncommon for TEFRA applications to take 6 MONTHS! And that's if we get approved. If we get denied and have to appeal it, then it can take even longer.

I am so disappointed and frustrated.

3 comments:

  1. How Frustrating! Our state programs here work similarly. As far as ages and such. however, we do have a summer program with the preschools -not everyone gets referred to go - but kids on the autism spectrum always do. Will he do the preschool with you school district when school resumes in the fall? You know I am curious - this is what I do now! I did speech therapy at our district preschool 2 days a week last year....

    I think you do a wonderful job as his mom and will be able to give him wonderful "therapy" this summer. Therapy prices are the battle when one doesn't have medicaid or some other gov't funded program - its just too dang expensive.

    I hope it gets worked out sooner rather than later!

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  2. Oh, Jess. :( I'm so sorry. :( I know it feels like a ticking time bomb, but remember that by the time he is 40, six months won't make a difference. And he *is* high-functioning, so I don't think it will completely fail him to wait a bit. Not with an amazing mom like you, anyway.

    (PS I haven't been here in awhile since I usually read your entries in my feed scroll... I like the new design. At least. I think it's new *paranoid*)

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  3. I don't know what to say, govt/state programs are so prejudice, an applicant with any education, decent background and a savings account gets discriminated against, most applicants get too intimidated by all the paper work and give up.

    Right now Jayce is getting the best therapy he can get, spending QUALITY time with his family in a relaxing playful but learning enviroment.

    Keep up the good work, you are an inspiration to many people, your perseverance will pay off. Good luck, I have faith things will all work out in the long run.

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