We got TEFRA!!!!!!!!!!!!!!

I am sure you've all heard me bitch and moan over the last 4 months about not having services provided for Jayce this summer. Well, that is all coming to and end. And not just because summer is ending! :)

We got a letter in the mail today with our Katie Beckett TEFRA/Medicaid card in it! For those of you without special needs kids, TEFRA is a version of medicaid that is not income based. Rather, its need based. You have to have some sort of disability to qualify for it. Its a great and lengthy process full of packets of forms, doctor's evaluations, and everything else under the son. We had a healthcare worker interview Jayce in the home and rank his "level of care" that he is able to provide himself (At 3, he should be able to help a parent undress himself and feed himself). Those daily life skill delays and his speech delay and his sensory disorder, and his official autism diagnosis, were enough to get us medicaid funds.

So, if you pay taxes, thank you for providing services for my son!

I understand why the cost of autism therapy is so high. Its a specialized service, most therapists have advanced degrees, coordinators and hospitals providing the services need to be paid. The travesty is the fact that most insurance companies will not allow funds to go to developmental delay therapy. I think we got approval from Brian's insurance last year to pay for 30 Speech therapy appointments. 30. For the entire year. Thank you, for letting my son have three months of speech therapy when he needs years, not months! And thank you, so much, blue cross/blue shield of south carolina, for only paying 50% of those therapy appointments. Would you like to know how much one week of Jayce's therapy at the hospital cost? Almost $1,000. Thats roughly over $50,000 a year for 4 hours of therapy a week. Yeah, we may not be low income, but we certainly can't afford to pick up the tab on that!

There is something called "Ryan's Law" SC Autism Ryan's Law which basically says that if you are an employee of the state of South Carolina, by law, the insurance company MUST pay for all therapies, including ABA (applied behavior analysis, which is the most expensive).

But, there, of course, is a loop hole. It didn't specify how much money it could allow insurance companies to provide. ABA providers can then say, "It costs $8/hr for 40 hours a week and insurance is only willing to give us $2/hr? No thank you, we will not accept your insurance."

But since Brian works for a private company that dictates its own rules, Ryan's Law does not apply to us anyway.
Individual policies, out-of-state policy providers and group plans of less than 50 participants are not required to cover ASDs by this law. We suggest you ask your insurance company to provide intensive therapy treatment options anyway.

I'm going to be making a call into our insurance again, because I want to put Jayce on the waiting list for ABA therapy in the next town over. Unfortunately, TEFRA will not cover ABA therapy due to something in SC called the "PDD Waiver". The PDD waiver allows children to receive 30 hours of ABA therapy a week... all paid for by the state. The catch? Well, first of all, there are only funds for 250 kids a year. Jayce is number 364. So, we are looking at getting funding from the waiver when he's 5. And all you psychology majors know that ABA therapy is MOST helpful before the age of 5. The other catch is, our lovely govenor, Mark Sanford, doesn't believe that SC kids actually *need* ABA services and is trying to cut funding for it.

So, if you are still there after reading all that mumbo jumbo and words with initials, I thank you. Life is good. Jayce will go back on the waiting list for the hospital to receive OT, ST, Feeding, and possibly PT. This is in addition to the school system providing services for him starting next Tuesday.

Here are some pictures I've been meaning to post from two weeks ago. This is Jayce and Carmen, his Early Intervention Coordinator (EI). We took pictures this day to submit to the company that Carmen works for, in hopes that Jayce's pretty little face will get on a brochure or something :) Carmen's been with us since the very beginning, almost exactly a year ago next week. We lost her for a few months while she subbed as a teacher in the special needs class, but we are so happy to have her back on our team! As you can see, she is the most happy and energetic person I know! And her love for Jayce (and all her kids) is really shown.

These pictures crack me up because Jayce was being so disobedient at the time! Carmen was showing Jayce her "sensory box" filled with dry rice. The goal was for him to be able to touch the rice in order to get the textured objects hidden underneath. As soon as he'd get one, he'd put the small rubber piece in his mouth! He knew he wasn't supposed to, he even said, "No no eat!" right before he did it! But with a big grin like that, you can't help but smile back!


  1. YEAH!!! that is fantastic news! i deal with this all the time so i understand all the hoops you get to jump through and the mess and the good too. yeah for jayce. keep me posted on his preschool and all the other stuff. you are a good mommy :)

  2. Anonymous9:11 AM

    Hi Jess,
    I was looking up something on the internet about TEFRA and came across your blog. Just wanted to clarify a few things you said about TEFRA, the PDD Waiver and Ryan's Law. First, the PDD Waiver is currently serving 370 kids and due to budget issues, it could stay there for a while but hopes are that due to the Stimulus package, funding will go back to where it was so that it will serve 525-550 as forseen. So, make sure you write your legislators to support it. By the way, my son is 10, on the PDD Waiver now for a little over a year and is making leaps and bounds even at age 10. So, although I agree that we need to get all kids in the program as early as possible, don't give up hope on progress if not. Also, Ryan's Law does specify how much coverage must be given for ABA and that is $50,000 a year total. Now does that mean that the insurance industry is following the intent of the law and not trying to put up hurdles, no. They are trying every trick in the book. But we are working on these issues and they have been brought up to the legislators and will be addressed. So while I know time is brain, don't give up hope. We are so much closer now than we were when my son was diagnosed in 2001 when there was no Ryan's Law or PDD Waiver. Let me know if I can help in any way! WWW.luluhowle.com and luluhowle@charter.net.

    Keep up the good work with Jayce and my thought and prayers are with you!

    Derrick Howle
    The LUCAS Network
    Greenville, SC

  3. I work at a disability advocacy organization in SC and have been looking more closely at issues involving TEFRA, EPSDT (Early & Periodic Screening, Diagnosis, & Treatment), and Autism. I am curious to know more about the services you will now be able to access through TEFRA and also would like to know what services you are being told are not available, such as ABA therapy. I think there may be an argument that ABA services should be provided to Medicaid eligible children, regardless of the PDD waiver. I would be grateful if you would email me at davison@protectionandadvocacy-sc.org so I can ask you more questions about your experience. Thanks!


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