Funding medical therapy not covered by INS?

[Bimmerbill]

DD recently diagnosed with a condition that will require expensive therapy that is not covered by most insurance companies (mine included). I am a federal employee so can choose from many plans and will shop around to find the one that best fits my needs. All FEHB plans consider the therapy "experimental."

Typical costs, as far as I can see, are $50 to $100K a year. Household income approx $80K.

I'm still in the process of seeing what help I can get from state agencies, but fear any help will dry up when she turns 3 and enters public school system.

Does anyone have any idea how to fund something like this? I'll sell everything I own, and raid the retirement accounts, but obviously would like to avoid that. Stable housing is important to me, as is our families future.

I'm at the beginning of the investigation stage in all of this, so not sure if the providers have a payment plan available or expect cash up front. If a payment plan I can work with it.

DW doesn't work full time, but may not be able to depending on treatment locations and amount of travel required. Cutting expenses to the bone I could probably do $500 to $750 a month, maybe $1000 if I liquidate toys and downsize to cheaper/older cars.

Any ideas from the smart money folks here?
Thanks

 

[Rich_by_the_Bay]

Sorry to hear about your daughter's situation. I wish all of you the best and can only imagine what that must be like as a parent. Still, especially with kids, they can be amazingly resilient.

A lot depends on the details of the condition and the proposed treatment. Hope your research turns something up. Feel free to PM me.

 

[haha]

DD recently diagnosed with a condition that will require expensive therapy that is not covered by most insurance companies (mine included). I am a federal employee so can choose from many plans and will shop around to find the one that best fits my needs. All FEHB plans consider the therapy "experimental."

Typical costs, as far as I can see, are $50 to $100K a year. Household income approx $80K.

I'm still in the process of seeing what help I can get from state agencies, but fear any help will dry up when she turns 3 and enters public school system.

Does anyone have any idea how to fund something like this? I'll sell everything I own, and raid the retirement accounts, but obviously would like to avoid that. Stable housing is important to me, as is our families future.

I'm at the beginning of the investigation stage in all of this, so not sure if the providers have a payment plan available or expect cash up front. If a payment plan I can work with it.

DW doesn't work full time, but may not be able to depending on treatment locations and amount of travel required. Cutting expenses to the bone I could probably do $500 to $750 a month, maybe $1000 if I liquidate toys and downsize to cheaper/older cars.

Any ideas from the smart money folks here?
Thanks

I don't have direct suggestions for you. I remember that the issue is autism. I know several families who have raised autistic kids quite successfully. Two young men are now in college and doing well.

There are a some fairly prominent people who are/were autistic- right now I am reaching to remember a woman who became a highly successful scientist.

Anyway, the families that I know personally made use of volunteer networks, family, and a relative minimum of bought therapy.

I am sure it seems overwhelming, but often much can be accomplished by a loving, dedicated family.

Ha

 

[FinanceDude]

DD recently diagnosed with a condition that will require expensive therapy that is not covered by most insurance companies (mine included). I am a federal employee so can choose from many plans and will shop around to find the one that best fits my needs. All FEHB plans consider the therapy "experimental."

Typical costs, as far as I can see, are $50 to $100K a year. Household income approx $80K.

I'm still in the process of seeing what help I can get from state agencies, but fear any help will dry up when she turns 3 and enters public school system.

Does anyone have any idea how to fund something like this? I'll sell everything I own, and raid the retirement accounts, but obviously would like to avoid that. Stable housing is important to me, as is our families future.

I'm at the beginning of the investigation stage in all of this, so not sure if the providers have a payment plan available or expect cash up front. If a payment plan I can work with it.

DW doesn't work full time, but may not be able to depending on treatment locations and amount of travel required. Cutting expenses to the bone I could probably do $500 to $750 a month, maybe $1000 if I liquidate toys and downsize to cheaper/older cars.

Any ideas from the smart money folks here?
Thanks

Hey PM me, I might have some ideas.........

 

[youbet]

ABA?

 

[Achiever51]

Suggest you contact the foundations/agencies/non-profit organizations working on the illness. Most websites will list family and community resources that may point you in the right direction or may at least give you a starting place.

 

[Bimmerbill]

Yes, its ABA therapy for autism. Crazy that the therapy that shows the best results (for some people) isn't covered. Heck, its basically BF Skinner stuff, right? Been around for a long time.

Still, there are many other therapies, and she may not do well with ABA. I expect any one on one to cost significant amount of funds.

Grant was $4500 and will provide 17 hours a week until the end of FEB. So, if I can continue that therapy, at those prices, it may be doable.

Docs recommend 25 hours weekly, the more the better, the earlier the better. So, I want to hit it hard, as long as DD can handle all the one on one.

We will probably take some classes too. My mom was talking about it too. She is 4 hours away tho.

 

[Martha]

ABA?

Intense and rigorous. But some have had good results. Isn't one of the most important thing to do is to get trained yourself as a parent to apply the behavior modification principles?

Oops, cross posted. Good luck Bimmer.

 

[Bimmerbill]

Yes, parents are very important to the whole process. I intend to do whatever it takes.

I plan to see if other towns have better resources, and can move (selling the house will be painful...). Also, can relocate to 2 other states as my work is centrally located between ME, NH, MA.

We diagnosed it early, she is 32 months, so with a lot of therapy there is a chance she will lose the diagnosis in 5 years or so. Not sure of the %, as there doesn't seem to be much scientific research yet, but I've read about 40%.

Is it even possible to float that kind of $ on CCs for 5 years?

 

[ladelfina]

Bimmerbill.. I only know a little about this and can't help with the funding aspect.. Nephew (now 6 and in "regular" 1st grade with a full-time shadow/assistant) was diagnosed autistic/Asperger's. My sis investigated ABA but it is not necessarily a panacea and is very costly and intensive. Sis was ready to fly to Denver for an RDI seminar (which she didn't ultimately do as her "DH" would not have been reliably on board anyway, and it is very much "family"-based, apparently, sadly not appropriate for them for certain reasons better left unexplained further). I have experienced many of my nephew's meltdowns and behaviors outside the norm since he was born; I'm not sure that rote ABA training would do more than superimpose a band-aid of programmed responses on an otherwise-unconventional nature or psyche. RDI seemed more of a baseline emotional "re-connecting" rather than a (what seemed to me as a more superficial, yet more "accepted" by "the system") mechanical "training" ABA approach. I think the RDI people have a DVD available for review.

Learn and Grow: Understanding RDI with Connections Center

She also looked into the "DAN" therapy model.. ultimately she hasn't opted for any of these 'proprietary' approaches but has relied on the public system so far. But her son is now relatively 'high-functioning' at this point.

A number of my nephew's "unacceptable behaviors" have abated somewhat with age and maturity. His meltdowns are fewer, and he's apparently not as super-sensitive as he had been. But he (and, to a small degree, his sister) still has many "issues" with not accepting authority, not buying in to the "master-apprentice" model, and basically perceiving every-day life as throwing a monkey wrench into his works (or he throws a monkey wrench into daily life.. depends on how you look at it!).

Sis has found decent-but-not-overwhelming support through the public school system (an Early Learning Center and enough people at least vaguely attuned to the issue). The level of support is, of course, a function of the community and their prop.tax structure (she is in CT and pays $8-9+k/year living in a very average house).

When nephew was in the (public) Early Learning Center in CT there were kids not as verbal/advanced as he but they all seemed to get quite a lot of attention and care: "occupational" therapy, language therapy and sensory therapy all. So don't give up entirely on the public system as yet; depending on where you are they could do a yeoman's job, and it might be up to you, based on your choice, only to supplement where necessary/appropriate outside of the hours where they can care for your child.

You and your wife will in any case need to be aggressive and vocal advocates for your DD.. You're "lucky" in that the NE is a bit more progressive and you'll find more treatment centers, support groups, awareness, and so forth than in some other areas of the country.

A few sites I collected over the past couple of years are here:

Wrong Planet Forums
MOM - Not Otherwise Specified
29 Marbles
Adventures in Autism
Autism Support Network | Connect. Guide. Unite.
Autism Speaks, Home Page

There were a few other interesting ones that have gone down the memory hole and are no longer active.

Some people think diet, vaccines, environmental toxins have a role; others not so much. Some report improvement with the removal of gluten (wheat protein) and casein (dairy protein) but this is in no way universal.

Another thing my sis was attracted by, but has not tried, was a kind of biofeedback, more or less.. sorry I can't find the link right now, but there was a practitioner in/around CT. After I speak to her in the next day or two I will try to post a link on that...

You'll find yourselves immersed in the world of "special-ed-speak", IEPs and so forth. Get to learn the baroque angles of this "educator speak".. learn the (often apparently quite stupid) ropes. There are key words you can employ as "triggers" that school authorities legally have to respond to. Many parents have recurred or at least feel the need to recur to lawyers in order to get their children's needs met according to the law. Overburdened school systems will drag things out and attempt to kick the can down the road. Sis sent me letters to review where I marveled at the language she used, but what I pointed out as odd phrasing she assured me was targeted "educator-ese", eg., "social typical peer immersion".

You'll have to learn and implement to the best of your family's advantage what is meant --technically, EXACTLY, literally and legally, to the particular school system you are dealing with-- by "need", "placement", "environment", "assistance", "monitoring". "services", "development", "behavior", "regulation", "processing", "support", "intervention" and so forth.. on and on. You may find info on autism forums that point you to more receptive school districts; it seems outside of those there isn't really any material public support. Autism seems to be labeled a psychological/psychiatric disorder more than a direct health issue.

Sis ran into the Catch-22 that no-one wanted to diagnose at a young age.. yet, as you point out, an early diagnosis could be very important. Her ins. co. refused to even make psych. appointments for kids younger than 6, IIRC so she ended up paying out-of-pocket. Then perhaps a limited number of visits with limited doctors, that she hasn't bothered to take advantage of. Neither do they cover any alternative therapies, should she want them.

Best of luck, and I'll try to get back on the biofeedback thing.

 

[youbet]

Grant was $4500 and will provide 17 hours a week until the end of FEB. So, if I can continue that therapy, at those prices, it may be doable.

Tell us a little about this grant. State? Is the $4500 price tag for four months at 17 yrs a week (sounds too good to be true, too affordable) a special deal through some agency or the state? Even if the grant isn't renewable, can you get more of the service at that price?

It seems like you'll learn two things over the next few months until this first batch of treatments/therapies ends:

1. Is ABA going to work for your daughter?
2. Can you continue at this very reasonable price? At only $13,500/yr, you'd figure out a way to pay that, right?

 

[Martha]

Bimmer, the credit card idea is not wise. You will be eaten alive by interest. Bankrupting your family is not a good plan.

Any chance of getting in as part of another study on ABA?

 

[Bimmerbill]

The grant is a special targeted injection of funds for children under 3 years old. Since the school system doen't get involved until age 3, the state came up with this to help out families who have an early diagnosis.

I hope to be able to continue the therapy (it hasn't started yet- not even sure if its ABA), if my daughter responds well to it and I can keep the affordable price. It has the added benefit of keeping her in daycare, so the therapist can visit there. I try to keep her in the same routine, tho she is very flexible most of the time.

I'm sure we will try all forms of therapy, RDI, floortime, TEACH, ABA, etc. Each kid is different so finding the right combo of therapy and therapist will take some time. She is a visual learner, and learns a lot by imitation (verbal and play).

I don't mind bankrupting myself, as long as I can get her the treatment she needs to give her the best possible chance of leading a productive life. Sure, I'd like to avoid it, but if that is the only way possible then thats what I'll do.

I'm young, have a stable fed job and can always earn more money and start over.

I have not given up on the local school system. I hope they can provide great services that I can supplement as needed. I also have the option of moving to a better funded town (or state) and finding a better school system.

I pay close to $5K a year in property taxes and have been paying into my town since 1993. 90%+ of the property taxes goes directly to the school district. Still, my town is small, and school performance is below state average.

 

[Zoocat]

Bimmer, depending on your and your wife's skills you may be able to barter services. It's worth a try!

Also, I'll add this outside the box suggestion: Look into food allergies. My young kids had behaviorial problems that were directly caused by allergies to wheat, eggs,and milk. Put them on the diet and they were perfectly fine. The ear infections went away too.

http://www.askdrsears.com/html/4/T041800.asp

 

[Bimmerbill]

Thanks. I have an appointment with the pedi neuro as well as the pedi gastro. None of the docs here "specialize" in autism, tho there are a couple DAN afflicated docs in NH.

DD has a severe allergy to peanuts, but nothing else tested positive during the entire battery of allergy tests we had a year ago. From what I've read, there is a theory about gluten and casein protiens affecting them differently. I'll probably explore this after I get some therapy started. 50-70% have some sort of GI issue. DD gets prune juice and miralax to keep things moving.

DD used to "stare into space" and take mini "time outs" a lot. One of our current therapists suggested a visit to the neuro, as she could have some sort of siezure disorder. 40% of autistic people have something.

Also going to the geneticist for testing. At least current health ins will cover most of this stuff. Its a process of elimination I guess.

I'm still in the early stages of investigating the whole treatment process. I am supposed to be living "one day at a time" but am a natural planner so have a tendency to look forward.

 

[mews]

Check out the area colleges - is there a degree program in OT? Special Ed? You may be able to find good helpers among the students - they get to practice skills in [whatever], maybe even earn some credits, and you get reasonably priced extra help.

What Ladelfina said about the legal / technical side - agreed.

Best wishes to you and your family - it is a tough situation, but early intervention can really help.

ta,
mews

 

[youbet]

I have not given up on the local school system. I hope they can provide great services that I can supplement as needed. I also have the option of moving to a better funded town (or state) and finding a better school system.

.

Your local school system is indeed where most of the public provided dollars are channeled through.

My 7 yr old grandson is afflicted with cerebral palsey (oxygen deprivation during birth) and has limited use of his right side and certain cognitive issues. Of course, the cognitive issues drive some personality and behavioral issues.

He attends a regular 2nd grade class and is receiving passing grades. The school provides some special services but not enough to satisfy us. So, he is also a client at Easter Seals where he receives occupational and speech therapy. That's where I come in...... I spend Monday and Wednesday afternoons picking him up from public school, taking him to Easter Seals for therapy and doing activities with him as prescribed by the therapists.

The medical plan provided by his mother's employer pays for most of the Easter Seals therapy sessions, but not all, as there is a limitation on how many sessions a years they will pay for. I need to do more work to see if I can find some assistance for them with that issue. Of course, just writing them a check goes a long way towards solving the problem.

In the 2+ years I've been taking him to Easter Seals, I've met dozens of parents/care givers struggling with the same issues you and we are. Lots of interesting discussions....... Resources and paying for them is a big problem. For example, speech therapists are so in demand here that when my grandson's speech therapist left Easter Seals for a job in the public school system last August, it took Easter Seals two months to find a replacement......

But probably the toughest nut to crack is determing good goals and objectives and finding/coordinating the resources to make them happen. Once you know what you want to do, how you're going to do it and how you'll measure results, making the necessary efforts and paying for everything seems like the easy part.

 

[Bimmerbill]

Thanks, we had her evaluated at the UNH center for disability, so there was always 1 or 2 students involved in the meetings. I plan to ask them if they have any students who want to make some extra money (and hopefully earn some credit hours).

My mother said she could move closer and help out. But she is going on 65 and on a fixed budget. I certainly don't want to disrupt her life. But, that is an option I can look at in the future. If only DW could get along with her...

 

[youbet]

Thanks, we had her evaluated at the UNH center for disability, so there was always 1 or 2 students involved in the meetings. I plan to ask them if they have any students who want to make some extra money (and hopefully earn some credit hours).

My mother said she could move closer and help out. But she is going on 65 and on a fixed budget. I certainly don't want to disrupt her life. But, that is an option I can look at in the future. If only DW could get along with her...

It sounds like you're doing a great job of getting on top of the issues. Be flexible, but do get a plan put together. Modifications can always be made as you go along.

My DW is a retired special ed teacher who has gone back part time partly due to the economy and mainly due to her old associates calling her weekly to nag her to return...... One of her cases is an autistic 4th grader. In DW's case, because she is p/t and just stays extra hours on her own nickle to focus on her own priorities, she is able to spend the time to position herself to help the boy's parents by coordinating most care he receives. This includes almost daily evening phone calls with the mom to give her updates and instructions on how to handle the evening's homework. She also takes the time to talk to the boy's outside therapists to assure coordination of goals and application of resources.

You're unlikely to wind up in a situation exactly like that or ours. In our grandson's case, his mom coordinates between the public school and Easter Seals with me being the general chauffer, errand runner, message delivery guy and logistic problem solver. My DW attends all meetings, reads the IEP's, therapist evaluations, doctor evaluations and advises our DIL on what should be happening, their rights to services, etc. Despite all this, I still sometimes wonder if goals and objectives are being adequately shared and agreed to and if resources are being coordinated as efficiently as possible.

Whatever family and extended family resources you muster, the sooner you get a plan in place and can focus your energy on execution, the better you'll feel. I find that wondering if we're doing what we should be doing and if we are doing all that we can do is much more troubling than spending time and money actually doing things. That is, I find wondering what to do much more painful than having a long list of to-do's and two women (DIL and DW) glaring at me wondering why they aren't all done!

It isn't all downside and gloomy for me. My grandson, by far, is my best and most loyal pal and I haven't felt the unconditional love I get from him since my mother died long ago....... I'm working to stay in decent enough shape that we can canoe and camp together in a few years.

 

[ladelfina]

This has some links to the experimental treatment I recalled:
AGE OF AUTISM: TODAY JOHN ELDER ROBISON CAN LOOK ME IN THE EYE
AGE OF AUTISM: JOHN ELDER ROBISON: BEFORE AND AFTER EXPERIMENTAL AUTISM TREATMENT

It's not "biofeedback" but an electro-magnetical stimulation, not very expensive and currently used already to treat depression. I heard about it because my sis had gone to the Autism Society of Connecticut mtg. mentioned in the first link. The before and after videos do show a significant difference in affect.. (keeping in mind, though, that this person was pretty high-functioning to start with). It may not pan out to be a miracle cure for all that are diagnosed with autism and other spectrum disorders but certainly a piece of the puzzle to keep an eye on. Best wishes...

 

[Bimmerbill]

That is great youbet!

Its been 3 weeks today since the dx, and I feel like I am making some progress, but no therapy has started yet (other than me spending every second I can trying to be fully engaged in play/teaching with DD).

Should know more tomorrow AM after meeting with the OT to discuss the grant $ and implementation.

 

[kyounge1956]

(snip)
There are a some fairly prominent people who are/were autistic- right now I am reaching to remember a woman who became a highly successful scientist.(snip)

Are you thinking of Temple Grandin, PhD?

 

[youbet]

Keep us posted Bimmerbill!

 

[kaneohe]

I just recently saw something on TV where some local (SF Bay Area) woman challenged Kaiser about some autistim case w/ her son and
(eventually) won. I don't recall what treatment but I do remember them talking about O.T. Might be some useful strategies there....
Ch. 7 (ABC)...perhaps the station could provide some info.

 

[Bimmerbill]

Some states, CA included, have passed laws forcing insurance companies to cover treatment costs for autism. Unfortunately, my state does not have a law on the books yet. They have a mental health parity law, but unsure how that will help/hinder me.

I guess I am still kind of amazed that there is no central point of contact to set up and begin treatment. If I got physically sick, my PCP would manage my care, make referrals and follow up. I'd have someone to call with questions, etc.

There doesn't seem to be anything like that in my search so far. There are many different agencies and private companies that offer treatment/support, but no one to manage the overall process. It appears that this is my job. I don't have a problem with that, and am making some progress working it.

It appears that paraprofessionals get about $15 an hour to do the actual 1 on 1 therapy. I'm sure the behaviorist gets much more to do an eval and develop a treatment plan.

So, I'll fully fund my FSA up to $6K max, as well as my child care FSA up to its max of $6K. Add in insurance (I plan to upgrade to a more comprehensive policy this open season) and I should be taking home very little...