I have just recently been informed that my son, Patrick, will be discharged from Magee Rehab Hospital next Friday morning, July 25th. It appears at this point he will be going home with his father, to the third floor walk-up apartment he lives in. Naturally, everyone is concerned about the situation and the doctors and therapists have voiced their concern as well.
They are on waiting lists for handicap accessible housing, but there are apparently long waiting lists. I'm not even sure how they plan on getting Patrick up to the third floor -- he is 6'2" and is paralyzed from about the waist down. As a Mom, I am a wreck over this! And with us over 600 miles away, it is so difficult! We did give Patrick the option of coming here with us, but he wants to stay in Pennsylvania. (We're in Michigan)
Patrick will continue to have therapy at home. Hopefully, in time, he will be able to continue his education. Patrick will be 28 on August 1st.
His father is trying hard to get things done to take care of Patrick, but it isn't an easy situation. He is currently collecting unemployment, so finances are a concern. Patrick will have many needs. The biggest hurdle is trying to find housing where Patrick will be safe, secure and able to get out and about. Until appropriate housing can be found, there are needs to get this apartment ready to accommodate Patrick and time is of the essence for that.
I am a mess, but there isn't anything I can do about all of this -- I just have to pray hard and hope things work out!
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Discharged to a 3rd Floor Walk-Up!!!
- By GailP
- Posted July 17, 2008 at 9:54 am · 9 replies
- In Family, parents and caregivers
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- By FuschiaFan
- Posted July 17, 2008 at 1:28 pm
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Unfortunately, it is the family and patient's responsibility to find appropriate housing for discharge. I find it hard to believe that the staff at Magee would not have told him this and advised a move. When I was in Chicago I had many clients who lived in the projects and were sent home via ambulance and carried up 10 stories to their apt. because the elevators where chronically broken, and never left except for being taken in another ambulance to the hospital.
Has his father started looking for a first floor apt. or house that would be easy to ramp? Adapted housing is difficult to find, and in many areas, Section 8 housing has waiting list of 5 years or more (this includes my area). We help our clients by educating them about what to look for in a regular apt. that will work, and then will do a home evaluation of what they find before discharge to be sure that appropriate equipment is in place.
Be sure that your son notifies the fire and police departments in his area that he will be in this apt. after discharge so that they can prioritize getting him out in an emergency if needed.
- By GailP
- Posted July 17, 2008 at 2:10 pm
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Thanks for your input, Fuschia Fan! Patrick's dad has been trying to find a house or an apartment that could be ramped and modified, but it hasn't worked out so far. Course his Dad isn't working either, is on unemployment and says he can't work as he has to take care of Patrick. They are on all the lists for subsidized and accessible housing, but as you know, the lists are long. The staff at Magee definitely advised that the 3rd floor walk-up would not work.
The good news is that we have just heard that a ground level apartment (only 6 steps) is available for them on August 1st. It's not ideal, but better than 3rd floor. So, hopefully, Patrick will only be on the 3rd floor for about a week. Patrick is insisting that his father be trained in how to get a wheelchair up and down steps (his father likes to think he knows all about everything).
Thanks for the suggestion about notifying the police and fire department. I will pass that along!
- By MARTY_T_67
- Posted July 18, 2008 at 8:07 am
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hi gail,
i just saw a commercial on tv bout these new chairs that climb steps and maintain balance on 2 wheels. maybe insurance would pay for something like that i dont know.im gonna search the chair and see if ican find some info on it. i myself can walk carefully and dont use a chair.ill let you know if i find something or if anyone else knows anything about them.
marty
- By FuschiaFan
- Posted July 18, 2008 at 8:56 am
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Marty, you are talking about the iBot wheelchair. $27,000 and not covered by Medicaid or Medicare (nor most other insurances). It also takes strong arms to get up/down the stairs with the iBot, so most often it requires another person to help.
- By MARTY_T_67
- Posted July 18, 2008 at 9:28 am
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oh ok.i was just reading about it..ty
- By GailP
- Posted July 18, 2008 at 9:46 am
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I so appreciate everyone's concern and help. We just have to stay positive, work with what we have and hope that something better works out before too long. It's very frustrating being 600 miles from Patrick. We want to make another trip out, but it's trying to get money together to do so. My husband and I both have MS, and only have disability incomes.
We want to be able to encourage Patrick and help him adjust and learn that he CAN still do things!
- By writerlass
- Posted July 18, 2008 at 2:00 pm
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You have gotten some very good advice already, and it looks like the new apartment may work out Ok for Patrick and his father.
In case you need to search for an apartment that is accessible at a later time, you should contact The Reeve Foundation's Paralysis Resource Center. They have fact sheets on home modifications and on Pennsylvania state resources.
The home mods document contains the link to the National Accessible Apartment Clearinghouse. It is;
www.accessibleapartments.org
Hope this helps!
- By pinkharleygurl
- Posted July 18, 2008 at 3:15 pm
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Hi Gail,
I have tried the Ibot - which in my state of Texas - DARS (Dept of Rehab Svcs) has paid for (for employment purposes). My doc is considering one for me so I can get back to work and address the serious issue I have in my wrists developing carpal tunnel syndrome. It will be a battle to get the funding but the pr
Women typically have significantly less upper body strength then men - especially the younger guys. You do need someone to "spot" you going upstairs. You go up backwards in the Ibot. Since he is paralyzed from the waist down he probably can do the stairs more easily than I and I really didn't have any difficulty.
I don't know about services provided by your state, I do know that Texas is rated on the lower scale nation wide.
The elevators were out when I was at the hospital where I have my therapy. Two therapists took me up a split level flight of stairs. It can be done, but the method is crucial for safety. Tell Dad he can learn but he will need help.
You are absolutely right about staying positive. Whenever I start feeling low, I think about my friend who is a quad at age 43. Her family has been unwilling to step up to the plate and she is living in a nursing home. Even though Patrick's home may not be ideal, it beats the alternative.
- By ATE
- Posted July 21, 2008 at 1:34 am
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We saw the demo of I-bot in one of the hospital here in Washington state and you are right. It cost $27,000!
My 16 yo SCI son wants to avail it and his teacher put up a fund raising to get the money. It will take how many fund raisings before we could probably come up with the amount. Do you know other ways or other organization that may help us obtain this equipment? Please Help!
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