On Special Needs Equipment

There were a few comments, here and on message groups, regarding my post on special needs equipment, so I thought I’d write a separate post to address those comments.

On FUNDING

The vast majority of equipment that I show listed here was purchased either with funding from insurance, state programs, or I purchased them used.

The walkers and wheelchair I purchased with primary funding from insurance, and secondary funding from state programs. A few things I purchased with independent grants that I applied for (found by researching on Google). One was the Challenged America grant, through which we purchased the stander used, and a couple were private grants. The Chill Out Chair and Discovery Tricycle we bought at about half-price at an Abilites Expo (the demo models) with funds from our tax refund for last year. Most of the rest of the stuff I found used at AWESOME prices (more on this later).

Getting everything paid for was NOT easy. For almost every single one, I had to collect many letters, get tons of documentation, appeal, get help from lawyers, etc. For example, both the HART walker and the Kidwalk were quite an endeavor. We got denied by our insurance, medicaid, and CCS. So I got a pro-bono lawyer involved through the Office of Clients Right, and requested funding through regional center, the payer of last resource. It took MONTHS and lots of letters and going back and forth, but eventually, we succeeded in getting them funded. Most of the times, I researched and wrote the letters myself, then took them to the doctors or therapists, had them read, review, and sign them. That way I knew I was getting exactly what I needed. I bought a massive file cabinet and put EVERYTHING away in very organized folders, as in the battle for funding, documentation and having copies of everything and using them for supportive evidence was ESSENTIAL. I always keep a list of every thing I’m working on, and every week, I check my list to see what is going on so I can make sure to keep moving everything forward.

On Purchasing USED equipment

Most of Nathan’s equipment was purchased used through various sources. My favorite is craigslist.

For example, this is how we got Nathan’s Dynavox. We tried getting it funded but kept getting denied. I realized that until I could prove that Nathan was proficient at using the device, I was going to have a very difficult time getting it funded. So I started looking for a used Dynavox. I figured that if we made the initial investment, we could get him proficient in it, then prove to all of the funding sources that he CAN use it. Now my plan is to sell the old one to recoup our investment, and get a new one through insurance.

I used the following query in Google:

site:craigslist.org Dynavox Vmax

This searches ALL of the craigslist all over the country (not just my local LA one) for a specific keyword. This way I started contacting people all over the country. I found many, but often by the time I contacted them they were already sold, or they were too expensive. Finally, I found one at at incredible price. It had been owned by a gentleman who had ALS, and passed away. His wife wanted it to go to someone who could really benefit from it. So we got and INCREDIBLE price on it. Then I started looking for the Eyemax. A couple of months later, we were fortunate to be contacted by Nathan’s wonderful SLP who informed us that one of her clients was selling theirs! Once again we got a great price for it. We’ve bought a TON of our kid’s stuff used this way, for example, Isabelle’s stroller we bought for about 1/8 of the regular price through a wonderful lady in Atlanta that we found on Craigslist.

Other places where you can find used equipment are:

Special Child Equipment Exchange

Rehab Equipment Exchange

AT XCHANGE

Of course, there’s also EBAY, but I have never purchased any equipment from Ebay as I typically find the prices to be too high.

Finally, you may want to do searches in your local area. Your local UCP or Easter Seals may have equipment exchanges or swap meets. I recently found this one:

Orange County UCP Swap Meet

The key with this is to keep a close eye on all possible sources and wait until what you need is available at a decent price. I think people often try to sell their equipment for more than it is worth, so I watch and wait until I find them at a price that I believe is fair.

On Gait Trainers

In my equipment post I mentioned that Nathan has 4 different gait trainers: The Kidwalk, Hart Walker, Pony Gait Trainer, and the LiteGait. Here’s what we’ve found with each of them:

– The Kidwalk: Although it is an AWESOME piece of equipment, it hasn’t worked well for Nathan. Nathan has very high muscle tone in his adductors, which make his legs scissor at his knees. When he tries to walk, he ends up crossing his legs and feet, and getting stuck. Therefore the Kidwalk wasn’t very good for him because he’d take a step or two then get his legs and feet all tangled up, making it a very frustrating experience for him. They have some straps and a special seat available for kids who have this problem, we tried them all, but unfortunately, Nathan’s scissoring was stronger. For a child who does not scissor, I think the kidwalk is AWESOME. After Nathan has his PERCS surgery I am excited to get him back in the Kidwalk, as it has nothing in front of him so he can have better contact with his environment and I think it gives him more mobility options.

– The Pony: This one has worked best for Nathan. It has a divider in the middle which keeps his feet and legs from crossing. You can tilt it forward, which makes it easier for him as the chest support takes some of his weight. It has a “seat” that also takes some of his weight, making weight transfers easier. These 3 features have made it possible for Nathan to cruise in his pony! The problem with the pony is that he doesn’t bear much weight, so it’s not really moving him forward towards independence. However, at this point, I am most interested in mobility and giving him the freedom to go wherever he wants to go!

– The Hart Walker: I fell in love with this walker when I saw it because it is both an orthotic device and a walker. It keeps his body in perfect alignment when moving. Unfortunately, because of Nathan’s tone in his adductors and hamstrings, he simply has never had the strength or capacity to move in the Hart Walker. Each step takes an insurmountable amount of effort, rendering it “not functional”. Also, we can’t tilt him forward in it, so he has to be completely vertical, and since he has such poor head and trunk control, it once again makes it hard for him to move. I’d hoped that with time and practice this would change, but so far we haven’t had much luck. Once again, after his PERCS surgery and once his head and trunk get stonger with Medek we will try him in it again and see if he has better success.

– The LiteGait: This is a lift/walker that is meant to suspend him over a treadmill so he can “practice” walking. We got it when he was very young and I am really grateful as I believe this is what taught him the cross pattern walking pattern. I know for many children it is difficult to take reciprocal steps – Nathan never had this problem, and I believe that is because of the Litegait. As a standalone walker, however, we found that it wasn’t functional. It is way too heavy for Nathan to move it. There is a lift mechanism that weights a lot, so it’s not really very mobile. Also, the wheels are pretty small so it’s not very easy to push along. We use it more as a lift system to suspend him over things, including the whole body vibration system, the IGallop, and when we want him to “stand” along different surfaces to play. I sometimes also use it as a “sitting” aid so he can work on head control while on a seated position, without falling back or to the sides.

On Nathan’s DAFO’s

I think it’s almost a daily occurrence that I read on blogs or message groups about children having problems with their AFO’s. There are a bunch of problems – they kick their feet out, or they give them blisters, or they don’t give enough support, or they’re uncomfortable. We were one of those families when Nathan got his first pair of AFO’s – they were trash that we were NEVER able to use.

Nathan’s new orthotist made this new pair. You can see pictures and read about them here:

Nathan’s AFO’s

The inner boot stabilizes Nathan’s foot, gives him a better fit, and makes the whole thing “work”. I don’t know too much about them, just that they are easy to put on and take off, Nathan can wear them for HOURS without complaining, and we’ve never had problems with them.

If you guys have any more questions, let me know!

Comments

  1. Loved this post. I often feel stressed out about finding the right equipment for Cody. We fortunately have dealt w/ DME’s, docs and therapists that have handled letter writing and prior authorizations for us so I’ve not had to get involved in the insurance approval process but it’s still a challenge. It seem like a constant thing to think about. In the last few months we’ve gotten an Otto Bach stroller and Kidwalk. Now waiting on approval for a Sleep Safe bed and Special Tomato car seat. Hopefully getting a swing of some type thru a Children at Home program in our county. Would love to get a bike but haven’t tackled that yet. It’s almost a full time job just staying on top of equipment needs isn’t it…

  2. Loving your tips! Do you mind if I share your tidbits of wisdom on kidz?

  3. http://Angie%20&%20Joe says

    I’ll add that kids that step out to the side may have trouble with the Kidwalk too. Joe has bruised his knees banging them on the wheels. It is also heavy so hard to move and hard for mom to lift into the van and transport to dance class.

    Your descriptions are very helpful, thanks!

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