1. Apply for grants! My favorite grant was United Healthcare Children's Foundation. They gave Chelsea $7,000 over the course of 2 years for speech and occupational therapy. Small Steps in Speech also gave Chelsea an $800 grant for speech, and we got a sensory hammock through Challenged America that helped immensely with her meltdowns.
3. Learn everything there is to know IEPs. Then fight HARD! Get the Wrightslaw books and come into every IEP with a plan! Remember- writing in a weekly 30 minute session to an IEP over the course of a school year is like deducting around $2,000 from what you would otherwise pay!!!
4. Hound your insurance to pay for therapy. Appeal, then appeal again. Talk to HR at the company you get it for; explain the situation. I was told that Chelsea's condition was so rare, it "didn't count" for getting therapy funding. But getting insurance to pay for 20 visits/ year is 1-2 grand less for me!
5. Hold a fundraiser. (I will tell you a secret- I hate fundraising with a fierce and burning passion, but I was willing to do it for Chelsea) I had an amazing friend who helped me put on a garage sale fundraiser one year when we had zero money left for Chelsea's therapy. People from our church and neighborhood donated things, and we raised $3,000! I know another mom who sold glow sticks to fund her kid's therapy.
6. Set up a GoFundMe account. People very generously donated to Chelsea's therapy account, and we raised another $2,000!
I know that there are no easy answers, and finances can be a very touchy subject. We have been very, very fortunate with finding sources to help pay for Chelsea's therapy, and wish the best of luck to everyone else!
I have a 5 year old daughter who was recently diagnosed with SATB2 syndrome. She has apraxia, poor coordination and balance, poor fine motor skills, and some cognitive delay. She has come a long way on her gross motor skills, but she is still pretty clumsy. I read on one of your blogs that there is a study now for kids with SATB2 syndrome that started in March 2016. Can you tell me more about that? Everything I read sounds so severe, and it is nice to see that your daughter is doing so well. My daughter is making progress in many areas, and she seems typical other than her speech most of the time. We do have some behavioral issues, but nothing severe. This is all pretty new to me. We have only been focused on apraxia until 2 months ago when we actually got the genetic diagnosis.
ReplyDeleteShe sounds just like Chelsea!!! And yes, there is a geneticist in Arkansas, US who is doing a study. If you email me (Mary.mecham.mom@gmail.com) I can get you his info. Also, we have an awesome parent support group on Facebook. It is SATB2 Associated Syndrome (2q32-33). We talk almost daily about topics, celebrate successes, and commiserate on bad days. We love new members! It can be super lonely without support!
DeleteSorry- it is actually 2q31-33. Some kids have bigger deletions, but are all similarly affected. I'd love to hear more about your cutie!
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