Monday, December 29, 2008


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.


  1. Hi Mrs. Meredith, I highly recommend finding an advocacy agency in your neck of the woods. Your school should be providing above and beyond what they are. I am not saying that they are bad in any way, but my experience with people who can pull the law out, as someone said in IDEA will get you services quickly. I also recommend keeping a journal of your contacts and such with the school. I recommend the same with all the evaluations. I work with children in a residential setting and so many of the parents don't realize the children have been working on things for 10+ years because they never save IEPS, evaluations, ST reports, etc. I know you won't let that happen for your children, just thought I'd throw it out there. I have one parent that scans them and keeps them on a flash drive and whenever someone new meets his son to work with him he asks if they can copy the whole file of him onto their computer for history!! I am grateful that above all... regardless of school and insurance, that all your children are safe, loved and progressing so much!!

  2. Your state must have a limitation in the amount of time they have to respond to a written formal request? Ours has thirty days to get the eval done!
    Another side note, we go to a local Children's hospital for therapy because they have charitable funding for those of us who make too much for Medicaid, but not enough to pay for therapy out of pocket!

  3. Your school is definitely not doing what it is required to do BY LAW. I would pursue that for sure! There is a great book called "From Emotions to Advocacy" which I found to be very helpful in figuring out how to deal with our school district. It even has sample letters you can use to correspond with the school district. I think when things are put in writing they are required to act within a certain number of days.

    Also, regarding the Medicaid waiver, you should call someone and ask about emergency status due to loss of medical coverage. Each person applying for the waiver is given a priority score based on their level of disability and needs. Emma might be able to be bumped up to the top of the waitlist due to her current needs. I know a family who was able to have their daughter bumped up when she had problems with her pacemaker. It's worth enquiring about! We just got a waiver in October and have had amazing services. We haven't paid anything out of pocket for Aidan since. Oc course, I don't have a clue how any of this works in Florida!

    Gosh, I really hope you can figure something out!

  4. Meredith, first of all I"ll second that your school system is completely out of order according to the IDEA act, that are not providing what the law calls "FAPE" to your child/children and if their feet were held to the fire they would certainly "snap to". There are time limitations on how long they can drag this stuff out.

    Second, if you are seriously interested in the home program, just realize that you only have to see your ND specialist once every 3-4 months... so we see one in Ga even though we live in NC. It's not convenient but overall, more convenient in my particular case to drive 4+ hours one way 4 times a year than it is to drive all over town several times a week.

    God will lead you on the right path, as He promises.


    Do NOT let the school system do this to Emma, she deserves services and their excuses are ludicrous! I would NEVER deny a child services that has the needs Emma does even though cognitive/language correlate. I would use my professional opinion that she would benefit from services. They can use this opinion for qualifying for services.

  6. I am assuming Florida has a long term care waiver, I would think they would have to for elderly people. In VA, kids with disabilities qualify under that same waiver. Might be worth checking in to. Our kids are on that waiver until they can get on the MR waiver, which has the waiting list.

    Here is one link I found, you may have seen it, but it talks about this waiver in FL ...

  7. I think you mentioned you had trained as a teacher. You are certainly good with your kids.

    If all else fails or in between waiting; is there any chance you could get only one of two therapy sessions and observe and then do the therapy yourself?

    I know from watching the speech teacher work with my little girl if I had to I could carry on. Actually over the summer we had no services and the teacher suggested I pull up ideas and work pages off the internet.

    This is certainly not ideal, but you have had the run around for months now and your kids have made so much progress with just you working with them anyway.

  8. Oy! What a fiasco! (sp?) I have no suggestions other than you move to California and become neighbors with me. We have a great school in our area that has "the works" as far as in class therapy and specialized everything. Charlie will be starting there 2 days a week this Winter.

    Prayers that you find an answer.

    Have you talked to a parent advocate? It just seems a little screwy the run-around you are getting. When I was getting the run-around from our school system a bit ago, I simply started throwing around words like FAPE and education benefit, and other stuff from the IDEA act. Once they had a clue that I knew what our rights were, we had no further shinanigans.

  9. You know, they make it difficult don't they? We just got notice our medicaid (special waiver, since we don't qualify for typical medicaid either) was being discontinued. Now we get to start the process of reapplying. Meanwhile, we have to put therapy on hold until we get it all worked out. Insurance doesn't kick in until we meet the deductible which of course starts over as of January 1st. We are lucky though. Sawyer is in a school we like 3 days a week, so I don't think he'll fall too far behind.
    Wish I had some good advice. I'll just wish you good luck navigating the red tape.


  10. Hi Meredith...
    I have to second or third the motion that your school district is not following the appropriate steps...
    Some thoughts on that...
    If you have wrote letters and have copies of them - make another copy and attach it to a NEW letter to the head of special services at your school district... AND send a copy to your Superintendent of Public Instruction at the STATE level. In the letter, be as specific as possible with the dates and information given. TYpically, once things go to the state level - the response is pretty darn fast.
    You might also want to see if you can find an advocate... they are usually free and can work with the school on your behalf. IF your district cannot provide services for your daughter - THEY need to pay to have those services available to you. There are alot of IEP books out there - buy a cheapie on eBay....
    As for the 9 month thing... thats a load of crap! When I brought my daughter home from Ukraine at age 2 - she did NOT speak... She did not start speaking until after age 2.5.. and then it was "Mama, no and Papa"... she was said to be in the 9-12 month age range when she qualified for speech therapy.
    Another idea would be to find someone who does ASL (sign language) and see if they can start to teach you the basics so that you can teach them to ALL your kids... We used basic sign the first 6 months - and occasionally still do - as Olya is extemely delayed...

    Best wishes!

  11. I agree with the others. Your school should be providing what Emma needs. They are to be there for PT, ST, OT and more. That is their job no matter what level the child is at. I wish I had answers. I wrote our local congressman and he was able to help us get through the loopholes so Curtis could get the Medicaid/OHP waiver since we still make so much (how I don't know when our pay hasn't even totalled $3000 a month for the last four months). Try to keep fighting! I know it's tough. I will pray that someone who reads this will have some help or answers you need!

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  13. Medicaid waivers...We applied for DD waiver here in NM (developmentally disabled) for 3 of our kids. We were homeschooling at the time and they rejected our applications because the kids weren't formally tested. In other words we had no "proof" they were DD. Letters from our pediatrician were rejected also. They had to have test results. This included Breanna, who was so profoundly handicapped that all she could do was lie in bed. We also applied for Medically Fragile waiver for her. It took over a year to process. We got her approval letter 3 weeks after she passed away. I agree with Ali Rae--- It seems to me that FL has some type of advocacy agency that is really good. This was 15 years ago, but we had an advocate attend our first IEP meetings with our first 2 adopted boys and the members of the IEP team really sat up and listened and we got pretty much every thing we asked for. (Except for that speech therapy, of course)

  14. The school district's eligibility criteria for speech therapy- that there must be a significant difference between cognitive and speech development- is NOT following IDEA. IDEA gives much more flexibility than this. If the district is correct, then students with profound disabilities would receive no related therapies at all. How is a child supposed to access the educational program without any mode of communication? And the run around with the other services is just ridiculous- they are out of compliance. You are right, they might not provide the ideal services- but you do want them on her IEP so at least they are an option! Definitely talk to a specialist in IDEA/special education law- if not a lawyer, then an advocate.
    Good luck.

  15. Hi Meredith,
    As a former TV news producer,I would suggest contacting your local newspapers or TV stations to do a story on your "battle" to get the appropriate services. This may get the school district jumping to be in compliance in order to avoid media scrutiny.

  16. I found the site I was looking for:
    It's a great resource for special education laws and regulations. If you look at the topic "Related Services" you will see that the district is not in compliance. Think about it in a practical sense- how could they develop an IEP for Emma without including any communication goals? Of course communication goals would be developed- basic receptive and expressive communication skills are required in order to meet other special education goals. Well speech and language therapy (its not just verbal speech) would be necessary to reach these goals. I really hate when districts give families the run around.