When your child is becoming non ambulatory and in the process of getting a power chair.  What types of things should I be looking to buy or change to my home that are the most important.  Do I have to get funding now?  I wish there was a guide for parents to follow when this all happens.  I feel overwhelmed.  Any help would be great!

thanks

Dina

Views: 47

Reply to This

Replies to This Discussion

The first bit of information is to get a vendor that knows about the chair. We have had tremendous nightmares dealing with our vendor. We have had our chair for two years and are still waiting for the repairs needed. Most insurances will pay for at least half and you may want to start fundraising if you live in a state that does not offer any financial help. I live in NY, need I say more. We got a permobil stander because it came highly recommended for our son who is now 15. PPMD is who recommeded the chair. The problem is there is not enogh trunk support to hold the child up. My son was resting all of his weight on his knees that were resting on the pads that were attached to the chair. I have been dealiong with permobil reps, but to no avail. As far as your home goes the bathroom and emergency exits are the most important. Get ramps installed at as many doors as possible. We are still waiting for a bathroom to be built, right now we still lift him and he is 118 lbs. We have tried to make all of the accomodations to our home because I wanted all parts of the home to be accessible to him except the basement. Wide doorways are a must, but you would be amazed how small a doorway will fit through. The power chairs tend to be wider and higher than the manual ones, so kitchen table may need to be raised. They should sit as straight backed as possible. We had to custom biuld my son's desk so he could do his homework. If you have any more qurstions you can email me at vainoskyfam6777@yahoo.com. My name is Lisa Vainosky.
I sent you a email. Thanks for responding
Dina

Lisa Vainosky said:
The first bit of information is to get a vendor that knows about the chair. We have had tremendous nightmares dealing with our vendor. We have had our chair for two years and are still waiting for the repairs needed. Most insurances will pay for at least half and you may want to start fundraising if you live in a state that does not offer any financial help. I live in NY, need I say more. We got a permobil stander because it came highly recommended for our son who is now 15. PPMD is who recommeded the chair. The problem is there is not enogh trunk support to hold the child up. My son was resting all of his weight on his knees that were resting on the pads that were attached to the chair. I have been dealiong with permobil reps, but to no avail. As far as your home goes the bathroom and emergency exits are the most important. Get ramps installed at as many doors as possible. We are still waiting for a bathroom to be built, right now we still lift him and he is 118 lbs. We have tried to make all of the accomodations to our home because I wanted all parts of the home to be accessible to him except the basement. Wide doorways are a must, but you would be amazed how small a doorway will fit through. The power chairs tend to be wider and higher than the manual ones, so kitchen table may need to be raised. They should sit as straight backed as possible. We had to custom biuld my son's desk so he could do his homework. If you have any more qurstions you can email me at vainoskyfam6777@yahoo.com. My name is Lisa Vainosky.
Hi

We met with a vendor and physical therapist who specializes in seating. We tried out 3 different chairs. One was front wheel drive, another mid-wheel and a 3rd rear wheel. They handle differently. It was recommended that he get tilt in space so that he can change pressure points. We also got a swing away arm so that he can drive up to table and desks. We got swing away footrests so that he could get out of the chair independently to go to the bathroom or what ever (he was still walkins some when he got his first chair. Get a padded head rest. We didn't get an elevator with the first chair and wished we had it. Chemisty labs were tough and sometimes he couldn't see over other students. Depending on how old your son is, this could wait until he is in HS. Some brands that I've seen mentioned on this site are invacare and permobile.
Funding: check with your insurance and ask how much durable equipment coverage you have. MDA has funded $2000 toward power chairs after insurance. The rest is for you to fund either personally or by fundraising. Unfortunately durable medical equipment is very expensive. We are talking between $6000-22000 or more. Sometimes services groups (like the Elks) or churches can help. The vendor will expect payment in full after insurance. If you are on medicade then forget all that I just wrote. Talk to your case manager. They determine what you can have.
Do you go to a muscular dystrophy clinic? They should be able to help you navigate some of this.
Best wishes and hang in there.
Thank you for all your help. We are trying to get a loaner power chair from MDA before we make that purchase. Hope they can find us one.
Dina

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2020   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service