To answer a few questions... of WHY ISN'T ___________ providing this?
The answer, tho I hate it, is there all around. Medicaid is the easiest answer. We don't qualify. There is a medicaid waiver. I applied for that as well for the kids since I wasn't sure if we would qualify for medicaid or not. We didn't, but I don't know whether my application for the waiver is still on the books. It won't help us NOW though because I understand there is a 3 year waiting list to get on this.
School system... ah the lovely school system... Here is our progress with them.
December 07 called and let them know we were adopting a school-age child.
March of 08 called to tell them she's HERE
Supposed to be evaluated in May, they bumped it to June, her surgery canceled it again, finally had it in July.
IEP scheduled for September, had the IEP, PT and ST and OT were supposed to be evaluated. We are told the PT and OT have an 8 week waiting list. They NOW put her on it. We are told her ST eval was done in July and she doesn't qualify for speech services. Her "cognitive score" and her "speech score" didn't have enough deviation to qualify. In other words, since they said she's at a 9 month level cognitively, then it doesn't matter that she doesn't talk, sign, or use any other forms of communication because neither would a 9 month old. First off, I don't buy the 9 month thing... second, why won't you TEACH her to???
Ok, So November rolls around and I call and say "It's been 8 weeks, what's the deal with PT and OT?" I'm told they'll get back to me. A few days later I get a return call. "They thought she was returning to school in March and they were supposed to do the eval in March." "Um, no, she's not going to school at all this year-not until NEXT August, and it's now been the 8 weeks that I was told we had to wait." "I'm sorry, we'll put her back on the list." "So you're saying it will be another 8 weeks of waiting? You realize that's 4 MONTHS that she's not getting any services?" "Yes, we'll do what we can." "Well, IF she'd been put on the list 2 months ago already, when would her eval be? Make it happen..." "I have no paperwork to document that we said she'd be evaluated before March and they wrote it down as March in the meeting." "Ah, but I was there, and we said immediately, and that it would take 8 weeks." "Right." "So she needs to be evaluated ASAP." "Right." CLICK
Fast forward, I ask her PT and ST to send them their most recent evals of Emma. Still no word, that was about a month ago. Our staffing person is out for 8 weeks due to surgery and returns at the end of January. I'll be talking with her!!
On that note, though, they have NO intensive therapy equipment at the school, and the teachers aren't used to working with kids that have so much untapped potential at this age. Most kids come to them in "maintenance mode" and they continue to work with them. The school system therapists are not used to getting a child at an 'explosion phase' as I like to call it where they're doing something new every week... So I'm not sure that the school would best serve Emma anyway. Even if they get ST going for her they won't work on eating, and to my understanding they'll work on strengthening but not on WALKING either... which seems pointless!
I looked up the link that was suggested I try and tho I'm interested in the idea, there's no locations near me, I live in Central Florida.
Thank you all for your ideas and advice! I did call CMS and hope to hear back from them after the new year to find out whether we were approved to receive total therapies funded by them with our current providers (since all their providers are at least 45 minutes away!). It's a wild ride, but God is good in the end. ALWAYS.