Affording therapy not covered by insurance?

[crankpotgirls]

Just wondering how other families handle paying for so much out of pocket. My 6 year old daughter is deaf and hears with a hearing aid and a cochlear implant. We do not have a cochlear implant center nearby so have had to do a great deal of travel. A couple of years of therapy, plus hearing gear is not covered by insurance, batteries, travel back and forth with hotel stays, yadda yadda, it all adds up. We homeschool and are living on one modest income. 4 years of this resulted in us recently declaring bankruptcy.

I just had my daughter's eyes checked recently and we have discovered that she has amblyopia. We are going to have a thorough exam tomorrow done by an opthomologist, but I know that he is not likely to be supportive of vision therapy. Our HMO does not include in its network the one and only optemetrist that does vision therapy here in our town. I am sad that I will not be able to provide something for her that very likely needs. And I feel just so heartbroken that we figured this out so darn late. I thought my daughter's clumsiness was solely due to the way her inner ears are formed. I never dreamed there was yet another issue she was dealing with. I feel terrible that I did not figure it out sooner.

I also suspect that she has SPD but I have never had her officially diagnosed. I have been overwhelmed with just everything and figured that we wouldn't be able to afford therapy for SPD anyway. I know there are other mothers out there dealing with so, so much more than I am so I really do not mean to sound like I am complaining. I am just frustrated that I can't take care of her as well as I would like. Homeschooling is the right fit for us- I can't imagine either of my girls thriving in school. But it means less income with me at home.

How do others with limited income handle all the co-pays or things just plain not covered by your insurnace? We are already eating beans and rice almost every night , I have no cell phone, we are looking into selling our second car, we have given up just about every "extra" I can think of.

Thanks for listening. It has been a rough week.

[Lindsay1234]

Dont beat yourself up over any of this! Seems like youre doing a great job!!!

Have you looked into Social Security or Shriners Hospitals? My dd gets SS for a few reasons and one is her hearing. (just aided) Shriners seems to cover so many things and help out SO much, I just found out they have free speech therapy here! Also, in CA we have a California Childrens Services (ccs) that pays for a lot of things ins didnt, have anything like that near you?

Good Luck!

[SpottedFoxx]

There are social security benefits for children with disabilities. Unfortunately, we don't qualify and between my son's therapies which aren't covered by insurance and my medical condition - we're flat broke.

[Linda on the move]

Originally Posted by crankpotgirls

We homeschool and are living on one modest income.

even though you homeschool, she can still get some therapies through the school. I'm not sure how this works, but may be some of the moms who've BTDT can help.

I feel terrible that I did not figure it out sooner.

I have a small list of things like that.

I also suspect that she has SPD but I have never had her officially diagnosed. I have been overwhelmed with just everything and figured that we wouldn't be able to afford therapy for SPD anyway.

there are a couple of good books -- "The Out of Sync Child" is a good, so is "Brain Gym". You might see if you can get them through your library. There's really a lot you can do for SPD at home.

I think it's hard to work with a sn child, even if they go to school. All those appointments, difficulty with after school care etc. My sn dd missed about 50 school days last year. I would really like to go back to work and I'm hoping to eventually get her to the place that I can, but she's not there yet, even though she attends school.

The financial impact of a sn child is tough for many families over the years. One of my friends has a child with classic autism and her dh is stuck in the military (he badly wants out) but they have GREAT insurance that pays for ABA therapy. So daddy is in a job he hates (which keep sending him into war zones) and the whole family moves every 4 years (which really messes with schools and therapies) so they can pay for therapy. It sucks.

[Eyelet]

It's a stinky spot to be in, isn't it?

My son has autism, we have limited income, and our insurance stinks. It breaks our hearts that we can't afford all kinds of therapy that he would definitely benefit from. As a PP mentioned, maybe you guys qualify for SSI? It might help. Another suggestion is maybe you can find grants that serve your area that helps disabled children with therapy. We're were able to get a one time grant through Bridges For Autism for our DS so he could receive hippotherapy. I've heard that sometimes service organizations will help, such as the Elks, Moose, Lions, etc.

I hope you're able to find some kind of help.

[~cassie]

We are in a similar spot--had to travel 6 hours away to our implant center and we went broke as well. My son has SSI and without that we would be in big trouble! Aside from that, he gets private speech therapy through a university graduate program--we pay only 75$ for 3 months of therapy-2 days a week, 1 hour each time! They have a similar program for motor issues but they can't take him for another 1-2 years.

Aside from that-I try to save money other places--groceries, household stuff, diapers, etc by couponing and following sales. I haven't paid for meds, diapers, dish soap, etc in several months, so that frees up money to use on my son's necessary stuff.

[Emmeline II]

Originally Posted by crankpotgirls

I am just frustrated that I can't take care of her as well as I would like. Homeschooling is the right fit for us- I can't imagine either of my girls thriving in school. But it means less income with me at home.

I realize it is hard to imagine, but have you seriously examined what it would be like to put them in school? Now and then a mom will post on the "Learning at School" board about putting their formerly homeschooled children in school (for various reasons) and are shocked when their children succeed, even thrive, in school. Even if homeschooling is the *best*, perhaps school + the therapies you might be able to afford with a second income, would have a good outcome as well.

Due to ds' (then) undiagnosed issues and an unmotivated, generally uncooperative school that ds attended for K, we moved ds to a charter school that is actually understanding, helpful, and cooperative regarding disabilities, and ds is having a much better year!

Any other diehard homeschoolers who decided to send their kids to school out there?? (http://www.mothering.com/discussions.../multipage.gif 1 2 3 4 5 ... Last Page)

[mekat]

I used to live in Florida and I can tell you it is highly doubtful you will get vision therapy from the schools. They don't do vision therapy what they have are vision teachers who help the student access the classroom which is entirely different from therapy (we have done both).

If the vision deficit is bad enough to qualify there are tons and tons of federal funding for the blind (she doesn't have to be blind just at significant risk). We got vision therapy through The Lighthouse and it was completely free. We stopped after a year because they were successful. Before starting my son would reach for something and miss it by several inches after finishing therapy for a year his vision wasn't any better but his coping was and now he can snatch up things right away.

My son has optic nerve colobomas, 6.0 far sighted both eyes, and some retina problems. The only thing that qualified him were the colobomas because they usually result in blindness or significant vision loss. My son can see but he has tunnel vision because he has blind spots in his side and upper vision fields because the parts of the optic nerve that helps sees those areas was completely unformed (which is what a coloboma is an unformed part).

Another thing of interest is not only did they provide therapy for free but if you go to the annual Family Cafe conference in Florida (you should attend it is extremely helpful to network and go to their seminars) they paid our entire hotel cost up front so all we had to do was pay for gas and incidentals.

Even if you don't think she will qualify I would go ahead and apply for benefits the worst they will say is no and it is a fairly quick process so it should not take a lot of effort. You will need a copy of her most recent vision records and make sure every last visual deficit is documented.

We no longer live in Florida but when we did reside there we lived in Hernando County and The Lighthouse was responsible for administering all the federally funded therapy in that county. I am not sure where you would have to go for other counties but the The Lighthouse is a national organization so if you contact them they should be able to give you the correct people to contact for your county.

One other thing to note is they won't let you double dip into federally funded programs if you use the vision teacher through the school district they won't let you do the outside federally funded vision therapy. We opted to stop therapy because ds was doing so well and felt it was more important his teacher get support to help him function in a classroom setting.

[RiverTam]

I'm lucky that we can afford most of the stuff my child needs. It pinches a lot, but it isn't wrecking us.

Have you checked any university graduate programs in the therapy areas you need? In my area, we have a lot of low cost services through the local universities and low cost clinics. Your state or county Early Intervention program or public health office can probably give you some information about low cost or free clinics.

[Drummer's Wife]

Child Find? Your child doesn't have to be in school to get an evaluation and even therapy. not sure if that will help with each of your issues, but it's worth looking into if you haven't already. I'm doing the same, b/c even though my kid is in public school (preschool) that has a process to get services to him, it is lengthy - and we just now started it a few weeks ago. It could be months until he gets an IEP and any therapies needed. It was like that with my older DS, too. Otherwise, the suggestion about checking your state's universities for programs is a good one. I was just looking into that a bit last night, and while it's confusing, there may be free or low-cost help out there.

[JD5351]

About your insurance--They may not cover it initially, but you can always file an appeal for an exception. This usually must be done in writing, and you'll need a letter from the dr or dr's to state the need for coverage based on medical necessity. You can usually go through 3 levels of appeal before it's a guaranteed no.

[Peony]

;hug It really bites. I've traveled for weeks at a time across the state for DD1's therapy, living rurally adds a whole other level. We manage but at a cost, massive credit card bills all due to therapy, savings/retirement drained, I work part time now. One of DD1's therapists is traveling for 5 weeks and I am SOO thrilled right now because that is an extra $800.00 a month that we can use to buy a new dishwasher that has been out for 6 months now. None of DD1's therapies has ever been covered, she was struggling so much and we got no help. My DD2 has also very expensive meds that insurance doesn't cover so between the two it feels like every month more and more is chipped away. It has been like this for 4 years now and never gets better.

[fairejour]

My daughter also uses cochlear implants. We get SSDI and she gets aural rehab (It is like AVT) from graduate students at our local big university. The therapy is great and they use a sliding scale. We pay $22 per session.

[anj_rn]

Have you applied for medicaid via the Medically Dependent Children's Program (sometime called Katie Beckett). We were able to get medicaid as a secondary insurance that covered what our primary did not (including co pays). It has been a lifesaver.