Here's where we're at...
Emma's PT for her to go 2x/week all year is a total of $32,340 MORE than our insurance covers. (they cover 20 sessions).
Emma's ST for her to go 1x/week all year is a total of $12,320 MORE than our new insurance covers. (again, 20 sessions).
ST I can see cutting back to every other week (tho I don't look forward to it because I do see her benefiting from the weekly ST).
PT I can't see cutting back on simply because she's made such HUGE gains in it and if possible we'd up it to 3x/week! I'd also love to get her into the intensive therapy, but again, $$ holds us back.
Our local ELKS isn't so local... I understand we'd have to drive an hour for therapies which isn't such an option right now, especially several times/week. Plus, they're "full" right now for PT anyway...
Medicaid/SSI isn't an option...
Anyone have suggestions that I might not have tried yet?? Grants? Anything?
I'm not sure if any of these folks are near you but we use a neurodevelopmental specialist through icando.org
ReplyDeleteRather than pay for professional therapy appts, these folks teach you how to do really intensive, focused programs at home, yourself.
It's overwhelming at first but it is doable and much more cost effective. One of my best friends has her 6 yo DS son on program and I've had my son with autism/asperger's on program, though we are "off" right now. I hope to take Mary for an eval sometime next year.
praying you find the right solution for your family.
Does your state have an insurance program for lower income families, but not families who qualify for medicaid? I know here (PA) and also where my relatives live (CT), there is a low cost insurance program for children, though I'm not really sure if it covers PT and ST.
ReplyDeleteI wish I had a better suggestion. I'll be praying.
I'm sure you've used the maximum funding available through your local county MRDD? Ours pays for some therapy even after kiddos turn 3. Is there a local college where you could find some students who are becoming PT's or ST's and see if they would be interested in working with Emma to get experience? Will your school district provide any therapies? Do you have Medicaid waivers in Florida? There is usually a waitlist but if you talk to your county MRDD they can probably tell you if those are available. I live in Ohio, but here they don't have income requirements for Medicaid waivers; Aidan qualified based on his diagnosis of Down syndrome and his delays. good luck, I hope you figure it out.
ReplyDeleteHI Meredith!
ReplyDeleteI have to second the looking into the state insurance options... I had a few other thoughts...
I am assuming that ST is speech therapy and PT is physical therapy. Does Emma qualify via the school district? I thought I read that awhile back... not sure! :)
I would look into some of the organizations that assist with people with disabilites in your area - see if there are any folks that work with those groups who volunteer their time... I know that this one might sounds a little far fetched - but try Special Olympics... they may have "trainers" who have PT backgrounds that could help too...
Is there a college nearby that may have students that are working to become PT's, OT's or Speech Therapists? See if they have any interns willing to take on some extra projects...
Other than those ideas... do you have a medical savings account set up? And of course I am assuming that you are keeping track of all your medical expenses to write off on your taxes....
Best of luck to you!
Hugs!
there is a program that is available to help individuals with disabilities who don't qualify for federal or state aid. It wouldn't cover it all but it might help some- I think the cap is $5 or $10,000 a year in assistance. I will dig up the link and post or email it to you...
ReplyDeleteWow, Meredith that's insane how expensive that is. Doesn't your local school system cover any therapies? Sarah, even before she started preschool, got ST, PT & OT once a week through the school system. Now that she's at school, she still gets it once a week. I know she's still a little too medically fragile to go to school, but the school is still responsible for giving her a fair and equal education.
ReplyDeleteSorry, edit to my previous comment. I meant to say that Emma is still too medically fragile.
ReplyDeleteI dont understand why the school system is not providing these services. In my state at least, they would be in her IEP as related services due to significant deficits that impede learning and functioning- isnt this part of IDEA? The fact that she is "homeschooled" would not change this. We have kids that are homeschooled or in private school that still get therapeutic services from the district. If the district is giving you a hard time, it might be worthwhile consulting a lawyer that specializes in special education/IDEA. It will cost you money at the outset, but its amazing how much more agreeable a district becomes when there is a lawyer at the table.
ReplyDeleteI just read this article recently.. I guess it's a possible lead. I checked out the links at the bottom and it looks like the Bright Steps Forward organization provides grants for kids going to 40 different clinics, so even if Therapies4Kids is not an option, you still might be able to get a grant for some other clinic.
ReplyDeletehttp://news.yahoo.com/s/ap/20081224/ap_on_re_us/a_child_s_steps;_ylt=Aj0fz6GrCd7dXayzJAU7eoFsaMYA
Hi Meredith! Do you know Mary Pringle? She is the president of the DS group in Cape Coral, FL. I met her at a DS conference a couple years ago. She is also an adoptive mom and seems very knowledgeable. She may be a resource for other options since she lives in FL also. I'll send you her email if you're interested.
ReplyDeleteWendy
To echo others, I would really recommend looking at a college/university near you. You could call there department (physical therapy/speech and language therapy/rehabilitation services?) and ask THEM to advertise to teachers/students. I don't know for sure that they will, but they may have some suggestions for you. You might also ask to speak with professors who teach those classes - they could talk to their classes and see if there is any interest.
ReplyDeleteAt my university, people are allowed to put up fliers for services (looking for nanny, etc.) or for buying/selling (used guitar, graduation tickets, etc.) You would need to check the policy - but you could put up a brief blurb about what you're looking for (a cute picture is a plus!) and tear off tags with your name/phone number/email on there - email is best with us college kids ;)
Maybe craigslist?? not sure...
Oh - I did some googling:
The university of central florida's school has an undergrad and grad communication sciences and disorders program through their college of health and public affairs (http://www.cohpa.ucf.edu/comdis/index.cfm)
You could try contacting UCF's NSSLHA (National Student Speech-Language and Hearing Association)
(http://pegasus.cc.ucf.edu/~nsslha/)
They also have a doctorate in physical therapy (might be harder to find a student to come out for experience though)
They also have certificates in:
- Child Language Disorders
- Medical Speech-Language Pathology
- Multicultural/Multilingual Speech-Language Pathology
Central Florida community college has a physical therapy assistant program http://www.cf.edu/programs/pta.htm
here is a list of school's with physical therapy programs in Florida: http://www.apta.org/AM/Template.cfm?section=PT_Programs&template=/aptaapps/accreditedschools/acc_schools_map.cfm&process=3&type=PT#Florida
Hope that helps!
Jaimie
We have the same set up with our insurance, getting only 20 covered visits for each therapy. That is fine for Joshua, but Evan needs much more intensive therapy and, like you, we cannot afford the out-of-pocket expenses. We have scaled back our therapy visits (he qualifies for PT 2-3 times per week, but we have only been going once per week and have now scaled back to twice a month). The PT works with me to teach me what I can work with him on at home and we spend a lot of time doing PT at home. He is also fortunate to get PT/OT at school, although, as you have mentioned before, everything at school is geared towards education (which is great), but it doesn't focus as much on mobility which is where most of his deficits are at this point.
ReplyDeleteA few things I would recommend doing if you haven't already. Contact your local MRDD. They often have a fund that members can use for things like therapy and medical equipment. Most of the time the money is handed out on a first come/first served basis, so it wouldn't be a reliable source of funds at all times, but it might help. Many MRDD programs also have programs where you can "check out" therapy equipment to use at home.
Also, because Emma has a diagnosis of CP, she qualifies for treatment at Shriner's hospitals (and there is one in Tampa). They cover ALL treatment (including her orthotics, any therapy equipment she might need (gait trainer, walker, wheelchairs, etc.), AND they will also contract with outside providers if you cannot do regular therapy at their facilities but do not have the funds necessary to pay for private therapy yourself (basically, they bill your insurance and then pick up the tab on everything that is not covered, so you never have to pay a dime). I think it would definitely be worth contacting them about. If you need any information, I would be more than happy to provide what I can: valerie@avitria.com