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Column

ACCESS-ABILITY Q&A

ALS patient seeking guidance on making home modifications

DEAR ANNETTE: My husband was recently diagnosed with ALS (Lou Gehrigís disease). We have been receiving some support and assistance from the ALS Association, including a wheelchair. My husbandís employer (the Naval Undersea Warfare Center) has helped him arrange to work from home four days a week.
We know that we will need to modify our house, starting with our bathroom. We would like to do these modifications only as needed, but we really donít know where to start. Can you recommend someone who can help us determine what is needed and how to go about this? Do you know of any contractors that do this kind of work?
B.H.
DEAR B.H.: Iím sorry to hear of your husbandís diagnosis. As you know, the course of this disease varies from one person to another, both in specific symptoms and speed of progression. Iím glad you have connected with the ALS Association. The local chapter has been known to help those with the disease and their families on a number of levels. While there is no known cure at this time, there are technologies that can help your husband lead an independent and full life as long as possible.
It is fortunate that your husband works at NUWC, since it has done a good job of accommodating disability in the past and appears to have a good grip on how to do it well. The fact that your husband wants to continue working demonstrates something that I have said for some time: There are more benefits to working than just the paycheck.
I donít give the name of specific vendors in the newspaper, but some sources you might want to contact include PARI (725-1966) and OSCIL (738-1013). Both are independent living centers and have resources to help you sort out what you need. Home modifications may be only one of several things you will need. They will also be able to direct you to any sources of funding for modifications if that is a concern.
What is important is that you and your husband make sure that any modifications to your home truly meet your needs. Do not settle for less. Even some very well-meaning contractors may not understand the specific needs you are trying to meet.
In the meantime, I hope the two of you are able to live life fully for as long as possible. I wish you the best.
DEAR ANNETTE: I live in Middletown and read your column often in The Newport Daily News, as I had in-laws with disabilities. This is the purpose of my email. My mother in-law (who had multiple sclerosis) and her husband (who had mobility issues) both passed away in the past few months. We have been clearing out their condo in West Warwick and have a number of items we arenít sure what to with. We have two power chairs and a Honda Odyssey van (about 35,000 miles) that has only a swivel driverís seat and a back bench; it is outfitted with a remote ramp and is designed for a chair to fit in the passengerís compartment and one in the middle of the van.
We also are thinking of working with the bank for a short sale of the condo. The condo is accessible and has ceiling lifts installed in the bedroom and bathroom. My husband and I would like to see these items go to someone who is in need. Any advice you could give me would be greatly appreciated.
M.B.
DEAR M.B.: Iím sorry for your loss. Losing two parents close together is not easy.
I do not get involved in the sale of items but I will try to direct you. If you are looking to donate the power chairs, you can contact Millie Feeney at Donovan Manor in Newport (619-1949, Ext. 1021) or PARI at 725-1966.
If you are looking to sell the van or condo on your own, I would suggest advertising in New Mobility magazine to reach persons with disabilities.
You may want to talk with the dealer where they got the van about selling it back. There is a market for these vehicles, but it is specific to needs, so that may be the best way to go about it. You may also want to talk to some agencies, such as Looking Upwards or the Maher Center, to see if they have a client that has funds for a vehicle.
Selling the condo to someone with the same needs may be difficult, since you have to find someone with the need who wants to live in that location and who can afford to purchase the unit. That is not an easy combination. You may want to talk with someone at PARI to see if they have a client who can meet those criteria. The Office of Rehabilitation Services may also know such an individual. However, either agency would only be able to provide a referral. Neither one would be able to broker the unit for you,
I hope these suggestions provide a direction for you even if I cannot help you directly.
Annette Bourbonniere of Newport is a member of the Newport Accessibility Advisory Committee and is involved in statewide advocacy groups for people with disabilities. Send her email at access-ability@verizon.net.
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