Can't afford PT/OT

[NiteNicole]

At this point, there is just no way I can see that we can afford PT or OT.

Our daughter has some form of/issue with dystonia and her right leg. She could not walk for a while but she's responding to meds and doing SO much better now. She can walk unassisted and that is getting better every day. At the same time, we can now REALLY see how much weaker she is now than four or five months ago. She doesn't have the stamina she did. Her core strength is just not there.

Her neurologist recommend PT and OT (she has some weakness and a bit of shakiness in her hands that we see sometimes but not always). She's not in school and we will not be sending her to the local public school. The private school we'd planned to send her to offers nothing. The local school system says that unless it impacts her school work (she's four and not in preschool till the fall and at this point, we're really looking at trying to sell hour house and move to a better school district so we could put her in public and maybe afford PT for her, or at least be in a system that provides more), it's not there problem. We don't qualify for any low income anything.

So I my question is - what can I do for her at home? PT and OT would only be 30 minutes a week, with me following up at home so I'm guessing the majority of the real work would happen at home anyway. I'm trying to find a wobble board for core strength. We're getting her on her bike and around the block as much as possible. When it's warm, we have a pool for swimming. We have a big backyard with not much in it - I've gotten a kick croquet set and balls to just kick and throw around. What else? She has a mini trampoline inside that she loves. We don't live in a great area for walking and there are NO local parks. When the weather is nice, I drive her to a park about half an hour away and let her play as long as she wants (but we've not had nice weather in a LONG time). I get her outside but she gets tired and discouraged with active playing pretty quickly, she wants to swing or play in the sandbox.

I don't know how to build up her activity level without making it a chore, but I don't have a ton of ideas.

What outside and active things do your kids love? Are there any toys or equipment that help?

[alicia622]

could you afford an occasional PT or OT appt to get en idea on what you should be doing at home? In my work, loads of kids have these appt and you are right the work really takes place between appt's. Have you ontacted early intervention? Not sure if she would qualify, but that's often an avenue to get the services she needs. Medical insurance usually pays for some PT/OT- can she get on state insurance- if you are over income maybe katie beckett?

I think it would be best to at least get evaluations and then go from there so you at least know where she is at.

[nhoutdoormama]

We've set up an indoor gym of sorts in our basement and our kids love it. Indoor trampoline, trapeze bar, big therapy ball, rug for rough and tumble. We also enjoy indoor swim lessons during the cold months. I know many families enjoy the Wii fit for indoor activity but we do not have one. Maybe you would find a "rainy day indoor playground" beneficial, I'm not sure how much space you have. I saw one on craigslist a few months ago. Went fast but they're out there. Perhaps a few therapy sessions would be helpful for you to learn what to provide at home, or maybe you could find a therapist who offers a sliding scale. As far as the school support goes, I would suggest making a lot of noise. As a former Special Ed teacher I am all too familiar with this struggle, it's all about the funding, or lack thereof. Keep pushing and advocating, I would suggest. As they say, the squeaky wheel...

Good luck!!

[runes]

Yes, you can do occasional consults with PT/OT so that they can assist with coming up with fun activities as your DD progresses. Once a month or once every 6 weeks might be a way of still having some professional input without the major expense. Good luck!

[NiteNicole]

We did the initial consult with a facility near us. They're huge and we'd heard some good things. WRONG. I think I posted here about it - it was just a really big let down and it was expensive (somewhere between $350 and $400/HALF hour!) and there's no way we can afford it. Our insurance will not even consider OT, but will "negotiate a rate for us" for PT. We're still waiting to hear about that. Even if this place were free, we wouldn't go. It would be a waste of our time (nevermind I have to drive half an hour both ways).

This is the thing - I live in a town of about 400 people. There just aren't that many services or facilities around us. At all. I don't mind driving to something that will help her but the last place, ugh. Hot mess.

We just don't qualify for anything. We're over income, but our insurance doesn't cover. She's either too old or too young for everything else. Every call we've made has been a dead end. I feel like there is system and we just can't break into it and we don't know how to navigate it. She's not in school and won't be till next fall, if then.

I am still so often just screaming inside because my child was fine six months ago and now I don't know what kind of path she's on. She's not "bad enough" for us to get help (thank God) but she needs SOMETHING and I don't know what it is or how to get it. Our ped isn't in the same state, she's not in school, her neurologist is also in another state and is not pediatric so he has no idea. No one I know has a kid with any level of special needs. I feel like no one can help me and she's just kind of adrift when there should be SOMETHING she could benefit from.

[leavemealone]

How old is your child? I don't know where you are located, but in the US, Early Intervention should help up to age 3. If your child is over 3, contact your local public school system for an eval. If your child qualifies, I think you should be able to receive OT/PT though the public preschool. Our child receives speech and OT through public preschool b/c he has an IEP and meets the guidelines for qualifying. I know that public school systems can really vary by the quality of services they offer, but it's at least worth looking into.

If you are in the US, does your state have a health care plan for children? Do you qualify? Our private insurance would only cover 20 speech therapy visits per year, but now that the kids are on the state medical plan, it covers 48 visits per year (or four per month). It also covers OT, but I think it's only 30 visits per year.

[NiteNicole]

She just turned four. Our public school said it's not their problem as long as it doesn't impact her ability to learn. This was the first thing we looked into and we've been told that it's just not something they deal with.

We would not qualify for any kind of state health care plan. We are not low income, just plain old falling through the cracks middle class.

The really crappy thing is that my husband's job offers great insurance - except he works from home 1200 miles away from the office and we're out of their range. So we have private insurance which is CRAZY expensive and skimpy.

[leavemealone]

Duh - now that I go back and read your first message, I see you answered most of my questions.

Anyway, it is my understanding that the school had to at least evaluate your child to see if the child qualifies. They can't just flat out tell you no without at least evaluating your child. Maybe someone who is more familiar with IEP/Section 504 can address that. It was clear with my child that he qualified under a speech delay, but he also qualifies for OT as well which was not an area of concern. We didn't know he might benefit for OT until we had Early Intervention asses him for their program for speech. It's since carried over to the public preschool. I am no expert, but I would look into whether your child qualifies under Section 504 http://www2.ed.gov/about/offices/list/ocr/504faq.html. That said, it sounds as if your public school system isn't that anxious to provide services even if they are required to do so. I don't know if they are or not, but I have heard lots of stories of school systems that fight parents on providing services.

If you haven't already, I would also look into how your husband's insurance deals with employees who live outside of the service area. Sometimes there are special guidelines for dealing with employees that live outside of the main service area. Also, the income guidelines for my state's medical plan isn't as low as I thought. It's 200% of the federal poverty level. It's still fairly low, but it's not so low that all working class people can't qualify. Your state's income/asset requirement may vary.

The other posters have addressed a lot of what you can do at home. For my child's OT, they want him to work on fine motor skills so we have toys that build on those skills: beads that he can string, toys like LEGOs, puzzles, etc.

[rainbringer]

Do you have a local Easter Seals or UCP or other organization that helps people with disabilities? Try calling them - even if they can't help, they can probably recommend someone else for you to try.

[heatherdeg]

Originally Posted by NiteNicole

She just turned four. Our public school said it's not their problem as long as it doesn't impact her ability to learn. This was the first thing we looked into and we've been told that it's just not something they deal with.

Actually, I think this is wrong. I believe it has to impact her ability to function in a classroom environment (whether she's in one or not). If she were in school, she wouldn't be able to participate in phys ed. She would also likely need accommodations to get from class to recess or "specials" (art, library, etc.) so they can't really say it wouldn't affect her in the school. They'd have to accommodate it and therefore I believe that means they'd also be on the hook for helping her overcome it.

Believe it or not, the schools don't usually know the specifics of the laws; and this is Federal--not state. Nor is it something that a state can override. I will e-mail my last SpEd instructor (who is regularly a professional court witness) and see if I can get clarification for you. Might take a few days.

[Pyrodjm]

Originally Posted by heatherdeg

Actually, I think this is wrong. I believe it has to impact her ability to function in a classroom environment (whether she's in one or not). If she were in school, she wouldn't be able to participate in phys ed. She would also likely need accommodations to get from class to recess or "specials" (art, library, etc.) so they can't really say it wouldn't affect her in the school. They'd have to accommodate it and therefore I believe that means they'd also be on the hook for helping her overcome it.

I was thinking the same thing. Preschoolers do all sorts of physical activities: using playgrounds, community walks, movement and movement activities indoors when the weather is inclement and moving between activity centers in the classroom. The kids in the universal pre-k classroom I work in stand and move around for almost the entire morning. Leg weakness and limited mobility would definitely be a problem for a child there. If they haven't already have them evaluate your daughter, it seems like she should qualify for services.

[leavemealone]

While the OT/PT your child would receive in preschool probably isn't the same as the OT/PT you would get privately, at least it is something that would benefit your child. In our case, our child received speech therapy at preschool but we also take him to private speech therapy. They work on different things speechwise, but I can tell that both benefit him in different ways.

[Purple Cat]

I would encourage you to reevaluate your priorities.

No, PT is NOT 30 minutes a week with most of the work done at home anyway. It sounds more like you don't think PT will be very helpful and don't want to spend money on it. You list a lot of items, like a swimming pool, private school, that suggest you may be able to afford PT, if you considered it a priority.

Delays multiple and build upon other delays. The little child who lacks core strength or shoulder strength, also lacks the essential foundation for handwriting. The child who cannot write, when age-appropriate, I would imagine would, in turn, not feel too great being the one or one of a few unable to write their name, etc., while all the other kids do.

Perhaps your daughter can, somehow write beautifully, and the general principle doesn't apply. But please don't miss the crucial point: your child is missing out by delays that your neurologist seems to believe could be ameliorated through therapy. But it seems you don't think PT would not be worth the cost.

I think you need to revisit that.

[heatherdeg]

Originally Posted by sandcastle

While the OT/PT your child would receive in preschool probably isn't the same as the OT/PT you would get privately, at least it is something that would benefit your child.

We had the opposite experience: the OT we had privately (that people raved about) was horrible and the one in our crappy school district made more progress with him in 5 weeks than the private one did in an entire school year. On the flip side, the ST at the school truly did nothing for him--but I don't have a private one to compare with.

I think it really just depends on the therapist. And just because you're in a crappy district doesn't mean they won't have good therapists. In fact, sometimes I wonder if the district OT is better because she's dealing with a more diverse set of issues or maybe being bombarded with way more kids? I don't know... maybe she just intuitively "gets" it where the private one didn't. Whatever... she is the only reason I'm dragging my kid to the local public school 3 days/week.

And since I'm not there to see the therapy, I CAN'T carry it through during the week. It's not like Early Intervention where they really wanted you to carry it through and preferred to do therapy with you at home. Total opposite.

Originally Posted by Purple Cat

You list a lot of items, like a swimming pool, private school, that suggest you may be able to afford PT, if you considered it a priority.

Outside of the private school, I didn't get the idea that the OP could afford therapy. She already has the pool and was looking for inexpensive ways to help her child in the absence of therapy. She said there wasn't anything in her yard, but didn't say anything about installing a playset.

I guess she could forego the private school and pay for PT, but then again, we don't really know how bad the public school is where she is, either.

[mrsfru]

Purple Cat,

While your points may be on target, the OP is here to look for support and suggestions. I'd have to disagree that she needs to "revisit her priorities". That's a little bit presumptious. Therapies are very, very expensive, and may very well end up costing more than some private schools (esp if it isn't just one 30 minute visit a week--what if it's 3 visits a week? Assuming almost $300/visit, that's almost $1200-3600/month=totalling $14,400-43,200/year!) Where we live, we have numerous private schools and many of them cost half of that $14,000/yr! Many of us will not place our child in our local public schools due to the school situation, and just b/c we would choose private school doesn't exactly mean that we can easily "afford" it. The OP may have parents or grandparents who are willing to pay for private school, but not understanding therapy, may not be willing to help pay for it.

Also, PT and OT often are things that you do most of at home. Yes, the therapist is invaluable and much can be learned, both for patient and parent. I wouldn't envy anyone who couldn't do therapy b/c of lack of insurance coverage for it.

I think it would be helpful for those who's kids have done PT and OT for core strength, large motor, and fine motor skills to explain what exactly it entails. The OP may find that most helpful in determining if PT really would be worthwhile for her dd.

OP, I'd have to agree that PT w/the right therapist really can't be replaced. Even a few visits to help evaluate your dd and provide you w/some direction can really help. It is definitely true that lack of core strength does impact fine motor skills....my son is experiencing this right now. He is 4.5 and in preschool, and he cannot write or paint or draw like the other kids. He is more clumsy. It is really tough for him at times, but luckily, he's a resilient kid, and his teachers are fabulous at building his confidence and helping him. So far, it hasn't been an issue, and we are starting his weekly OT visits on Wednesday to learn how to help him. He also will be doing some PT visits, but mostly his PT is planning on a home exercise program. Some of his issues have some neurological basis, and I don't know yet where that will take us.

At any rate, if there's some way you can at least complete a PT and an OT evaluation, I think you would gain a lot of knowledge that will help her now and in the future. It's great that you want to buy the right tools for home use, but you really need a pro to show you how to best use them. Otherwise, you risk accidentally exercising incorrectly, strengthening the wrong muscles/groups, or even causing injury. Sometimes what seems intuitively the "right" way to do something is not at all.

hths

GL!

mrsfru

[leavemealone]

Originally Posted by heatherdeg

We had the opposite experience: the OT we had privately (that people raved about) was horrible and the one in our crappy school district made more progress with him in 5 weeks than the private one did in an entire school year. On the flip side, the ST at the school truly did nothing for him--but I don't have a private one to compare with.

I think it really just depends on the therapist. And just because you're in a crappy district doesn't mean they won't have good therapists. In fact, sometimes I wonder if the district OT is better because she's dealing with a more diverse set of issues or maybe being bombarded with way more kids? I don't know... maybe she just intuitively "gets" it where the private one didn't. Whatever... she is the only reason I'm dragging my kid to the local public school 3 days/week.

And since I'm not there to see the therapy, I CAN'T carry it through during the week. It's not like Early Intervention where they really wanted you to carry it through and preferred to do therapy with you at home. Total opposite.

I didn't mean that one therapy was better than another. In our case, our son receives speech in preschool and privately. The speech he receives in preschool focuses more on communication for education, whereas the speech he receives in private therapy is more broad. The private therapy covers play, alternative communication like signing, working a bit on PECS with me, and other things that the school district can't really do, partly b/c they require parental involvement (such as learning PECS). Also, for us, the private speech is more focused with one therapist, one child, a parent in one room whereas the speech in preschool is integrated into the classroom. His OT is also done in the classroom and while the therapist is working with my child during his time, there's bound to be some distractions with everything else that's going on in the room. That said, I can definitely see how the speech and OT that he receives in preschool has benefited him just as the speech he receives privately has benefited him. It took a while before we found a private speech therapist that my child responded to. I would think that OT and PT privately would be different than what the school system could provide b/c the private therapy can be more focused, but at least the child would be receiving some therapy in school. For us, Early Intervention was pointless for our child, but the preschool has been helpful. We live in a pretty good school district, but one that has a lot of financial difficulties (lots of program cuts, state minimum on busing, layoffs, etc) right now, but the therapists are still good, at least at the preschool level.

[NiteNicole]

As I said, we did take her for a PT and OT eval (I have another thread on this somewhere in this forum. It was horrible, disorganized, chaotic). I can not stress this enough - we live in a small town in the middle of nowhere. You can not imagine all the things and options we DON'T have.

You list a lot of items, like a swimming pool, private school, that suggest you may be able to afford PT, if you considered it a priority.

I think you don't know enough about me to make that kind of call. You need to revisit THAT.

The pool came with the house. I guess I could dig it up, but that seems pointless. I'd cover it, but a cover is about four grand, and we can't really try to sell the house with a big festering hole in the backyard.

This is rural Mississippi. Private school is about $300/month (and since you're keeping score, that's less than one half hour of PT or OT and at this point unless the meds work miracles, it doesn't matter as they probably won't take her with any kind of SN). The local public school, and there is ONE because this is a town of 400 people - is over crowded and under funded. I know a handfull of people who teach there and they won't send their own kids to that school. I've been told it's "rough" as well as way way below standards. I have nothing against public schools, but this particular one is not where I'm going to send my child.

We are basically in a world of sh!t right now. We bought this house when our finances were in order and we were all healthy. We did not know that we might ever need public school, PT, or OT. We didn't know that my husband's insurance situation would be so bad. We didn't know we'd be paying so much out of pocket for various medical costs, trips to specialists, and gas to get there.

We are now strapped. Our credit cards are getting full. We are planning to try to sell our house and move to another town. My daughter will be devistated as she loves our house and living so close to my parents but we'll be in a better school district and closer to some of her doctors and we HOPE that there will be better pt/ot programs there (obviously, we'll check before actually moving). It's going to mean going back to renting and possibly my finding a job instead of staying home. We probably won't have anymore children as I'm getting close to 40 and we need to focus all our resources on the one we have. I'm willing to do an awful damn lot for my child so do not tell me my priorities are messed up. I would give up my own legs if hers would work. You don't know me, you have no right to make that kind of judgment.

Six months ago everything was fine. She's gotten worse and better, worse and better again. Today she's falling some when she walks. My heart is breaking for her every minute of the day. Don't tell me I need to revisit my priorities.

[Pyrodjm]

Have you considered getting her evaluated privately? Since the districts eval was so bad you could counter with a report from another specialist. Many parents I have worked with have done this when they felt that the schools evaulation was not thorough enough or they are found not to qualify and want a second opinion. It will probably be a expensive but it is a one time cost.

[NiteNicole]

We had a private eval, pt and ot, and we paid for those ourselves. The school is telling me that they won't even deal with her. She's not IN preschool till next fall.

Here's the thing - given where we live and the school and district we are dealing with, that is pretty much a dead end.

Private is an expense that if I could scrape it together and find a good facility, i would.

My question is - while I can not get anything for her right now and have inquiries out all over, is there anything I can do for her at home.

[alicia622]

So, I was checking out the Mississippi healthcare website and two things jumped out at me as possible options- the first was the 'disabled children living at home' this is the katie beckett coverage I mentioned. I don't know if your daughter would quailfy but it's worth checking into. This is medicaid that doesn't take into consideration the family income- in my state, you would have to pay monthly fee for this coverage but it's pretty reasonable unless you are making a ton of money. Most families I have worked with pay about 40 dollars a month through this (although I did work with one family who paid 500 a month!!! both parents were physicians so they had a very high income).

The other idea I had is to contact an agency providing early intervention/case management. Even though this service is for kids up to age 3, they are likely very well versed in the system that is in place for kids like your daughter. I work for a case management agency and I know we would do what ever we could to help you figure out how to get your daughter the support she needs. I can't speak for any other agency, but the people I work with would be really upset about a child slipping through the cracks.

Good Luck!!