Suggestions for equipment?

[Jacob's Mom]

I know many of you have children with physical disabilities similar to Jacob, so I hope you can help me. We have been trying to get Jacob a stander for so long now and we just hit a wall each time. Insurance won't cover it. EIP here in FL is geared more towards developmental disability. A few charity organizations we have contacted have not pulled through for us. The bottom line is Jacob needs a stander very badly.

I am wondering if any of you have any suggestions for what we can do to get him the appropriate stander. Specific charities, organizations, etc.? He is very low tone, so he will require one with very good support.

Thanks in advance!!

[Karen S.]

Amanda, does Jacob have a physical therapist that may be able to help you? I know when Hannah was born, my insurance company purchased a feeder seat for her which we only used for 6 months. It cost over $1,000 and I knew that they were hard to come by. I donated it to my OT therapist so that she could loan it to families that couldn't get one. She did the same for us and gave us a stander on loan.

The only charity groups that come to mind are the Variety Club and Shrinners, but I don't know if they are national organziations. We did get assistance last year from our Electric Company (go figure). They have a program where people roundup their electric bill and the difference is put into a fund and used for people in the community. They paid for our hotel room last year when we had to make 3 trips to Chicago to see Hannah's doctors. Also, what about searching on EBAY. I have personally never bought anything on there, but I hear they have everything.

Good luck in your seach.

Karen

[j's mom]

Hi Amanda-

When my husband was in engineering school at the University of Buffalo, he custom-built a recreational scooter for kids in wheelchairs; the kids actually drive the scooter around! Maybe you could contact the engineering school at the local university to see if any students would take on an independent study project to custom design a stander for Jacob. The nice part is that the stander would be funded by the school, but it may take a semester to build. This might be something to consider long-term. If you'd like more information about the professor who teaches the independent study course at UB, send me an e-mail; maybe he has contacts in Florida.
Tracy

[Lily's Mom]

Hi Amanda,
I'm an Ebay maniac. We got Lily's gait trainer, an extra suction machine, and an extra kangaroo pump there. (Not to mention a great double jogging stroller, Lily's new bed, curtains to match Benjamin's nursery, etc. etc. etc.) I search randomly for medical equipment from time to time, and I've seen several standers (Rifton and Tumble Forms) for sale. You have to just keep checking from time to time. Let me know if I can help!
Good luck!
Hugs to Jacob
Erica (Lily's Mom)

[cariaad]

There is an organization called First Hand (I think the website is www.firsthandfoundation.org) that might be able to help. I dont know much about them, but saw it mentioned on another board. Also, contact your local Shriners, they may be able to help. Deb

[christyw]

Amanda,

Gaithy had stander back in 2001/2002 that was never any use to her, but her PT INSISTED...now isn't that terrible, we had one that we didn't need - and you all need one! I think so. But anyway, she was never low-tone and resisted it like crazy, hated it, and learned all she needed about standing, walking, etc... at her own pace. Anyway, I would bet that the stand is too small for Jacob because we ordered the smallest one possible, of course it does adjust, but she was so little back then. But, I did give it back to the PT, but if she's not using it, I might be able to get it back and give it to you. But, it is probably too small, but I'll check. I'll try to find out today.

Christy