Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

SCI - funding for modifications of home

bluiz
0 Recommendations

My 22 yr old son was injured and is now a C6 Quad. We have been struggling to get the home modifications done for our son. Every where we turn, there seems to be no help. We have done very little so far with the funds we were given by family. There is still much to do and we are in need of funds. We are looking for any programs, organizations or grants that would pay for these modifications. I have contacted a couple but they are not willing to help since we have started by putting in one ramp & modifying an office for a bedroom on the main floor. Any help any of you may be able to offer through your experiences would be greatly appreciated.

Explore topics in this discussion:

ALS Paralysis

18 replies

FuschiaFan

How was he injured? If in an auto accident, I believe MI has special programs for this. Otherwise, you can check to see if the DOR/DVR provides any of this in your state. They don't in mine, but some do. Also check with your local United Way or other agency to see if they know of any local organizations that might help. In my area for example, there is an organization of professional men called the "Good Guys" who sometimes come through for us on things like this. Try the service clubs (Kiwanis, Rotary, Lions, etc.) as well. How about your church or synagog? What kind of modifications are you trying to get done?

Norm

I'm in the same boat in Pa. I've only found one charity organization in my area of PA thats willing to give up to $15.000 for home mods & its only good for the inside of the existing framework of your house. If you want to add on to your home forget it they will not do it. Their money has been frozen since July 07. I've been on the list since Sept 06. Most of these Gov't, State & Private charity organizations are a joke when it come to this type of funding.

vavlov

Our organization, the Catastrophic Injury Program of the National Transplant Assistance Fund, provides assistance to spinal cord patients and their families who wish to do fundraising in their local communities. The money that is raised can be used for home modifications and other expenses related to the injury. Please see our website at www.catastrophicfund.org or call us at 800-642-8399 for more information.

FuschiaFan

I can heartily endorse the NTAF as a valuable resource for those who are doing fund raising for things like home modifications, van purchase or modification, or other things not covered by insurance.

It is nice if you can get outside funds for home modifications, but I don't see that the community or govt. agencies have an obligation to do this for you. My parents paid for their own extensive modifications to make their home fully accessible for my mother, and most other people have to do this too. You can take a tax deduction on this.

nicksproudmomma

i too can sympathize with you - no, the government or community does not "owe" it to you - but it is frustrating when you see what others "can" get. we are attempting to make our house somewhat accesable for our son (almost 3 y.o.). - this is after selling a vehicle, and our home to get a smaller mortgage. i too have found no help. even from family. the most frustrating part is that we have 2 other children and because of putting most of our extra money into modifications, they miss out on things. i think everyone does their best for their children, times are tough and getting tougher. the recent price rocket in gas makes for a $25.00 gas bill each trip to therapy for nick which is 3 x per week. it is not like any of us ever want to ask for help, but it amazes me what i see other organizations/people support. there is very little as far as paralysis. i think that people that do not walk in others shoes have no idea what things are like. i wish i had some more to offer, but i have not found anything either. will sure let you know if i do. wishing you the best of luck.
tanya - nick www.caringbridge.org/visit/nicholasdeyo

horsestail

You may want to talk to the information specialist at the Christopher & Dana Reeve Foundation www.paralysis.org as they can email you a list of organization that may be able to help and it seems I remember seeing some that help. Also you want to check NASCI www.spinalcord.org to see if you state has this program and if they have HASCI program. They do some help as well as with assistance for care. See if your county has a Community Long Term Care program. Instead of being in a nursing home you can get care at home and they may help with the modifications. They are going to help with my ramp and I am going to be geing some supplies free as well as a personal care person to help with light house work & meal prep. There were some other choices, but I did not need them. I have just getting started with the CLTC program and I am in the last phase of getting on the HASCI program, which when I get approve will take over for CLTC. The HASCI program I know will help with vehicle modifications. I hope this helps. I have found that going to SCI peer support group can be a wealth of informaiton as it is where I learned about the CLTC program and help getting connected with the HASCI. The NASCI website can connect you to a group - that is if you state has one.
Good luck!

FuschiaFan

NSCIA (National Spinal Cord Injury Association), not NASCI: www.spinalcord.org

horsestail

Also try the United Spinal Association at www.unitedspinal.org. You might be able to get a $500 grant that could help a bit. Their membership is free and the Action magazine is loaded with good information as is there site.

Norm

Well the gov't in the UK is willing to build an addition onto a friends house who's adult daughter has fatal ALS. But the daughter doesn't want to leave her apartment that has many steps. So she sits in her apartment all the time. To top it off she was born in the USA & I'm not even sure if she ever became a British citizen. So some gov't systems care about the disabled & others like the USA don't!

pattyacarpenter

I also have a son that is a C5 Quad, age 26. He was injured over 2 years ago and I have been extremely busy trying to find all the organizations that provide help. I understand your frustrations and there's no book or one person to guide and direct you. Most of the information that I have found is through research and phone calls and numerous questions. I started with all the government agencies first. Depending on the type of disability benefits your son receives, might determine what resources will be available. Does he get SSI or Social Security Disability. If your son wants to go back to school or go to work, you might start with the Department of Vocational Rehabilitation. This orgaination, depending on funding, might help with a vehicle and modifications, and possibly home modifications. There is also an organization called Resources for Independent Living that will help with modifications for your home. You might want to get in touch with these agencies first to see what they are willing to do for your son. Good Luck, the squekey wheel gets the oil.....call and keep on top of it, the process is long, but it will pay off.

bluiz

I am trying to get a second ramp added on for a second exit to the home as well as taking out all of the carpet and replacing the floors with something more suitable for a manual wheelchair.

Theresa-Ann

After reading many of your issues and concerns, I am totally sadden that there doesn't seem to be a lot of help out there. I guess I now know what my family will be up against with my brother. Currently he's labeled a C4 Quad. I am glad that I read what frustrations are out there and I saw some foundations and services that may be helpful, but I have to admit, it scared me even more too. If we find anything helpful when the time comes, I will be sure to pass it along.

Lorenza1

Go to these links for information about funding:

http://www.wheelchairnet.org/WCN_Living/homemod.html

http://www.disabilityrights.org/mod3.htm

Robin2

We need to ban together and write letters to our state reps. There are enough of us that we can make a difference for ourselves. The government waste so much $$ every day. We need to find a way to get some of it to help ourselves. This is how we can empower ourselves. Habitat for Humanity built me an accessible house(to the best of their ability) along with grants from Ohio University which I am a graduate of and from NAMI. I live alone and struggle with upkeep,bills and assistance with care. However I am fortunate in a lot of ways. I think if we start a site where we can pull all of our known resources, start electronic petetions to gov. officials, etc. we can get some much needed universal help. I am not much of a typist and am not computer savy, but I am persistant! I'd be willing to help any way I could.

FuschiaFan

I won't donate to Habitat for Humanity because of their failure to make all their houses accessible at the visitable level, which is no more expensive and not any more difficult when building housing from the ground up. I have conveyed this to them and they always say "we will build an individual an accessible home if needed" but that does not let you visit your friends or potentially purchase a home built by HFH for someone else down the road. We need to push for all housing to be visitable. Some cities (ie, Santa Monica, CA for example) have now mandated this for all new construction of homes within their city (via the building codes).

bluiz

I would be willing to help type something up if we wanted to put something together. I agree that we might be able to do something if enough of us are willing to stick together. We would need someone who has done this type of thing before to put the draft document together but I am more than willing to help.

Lsamson

You may want to contact our non profit- NTAF Catastrophic Injury Program. Our mission is to help catastrophic injury patients and their famlies afford critical but uninsured medically related expenses through fundraising guidance, patient support and resouces, and finanical assistance. We can be reached at 1-800-642-8399. We helped fund 30 home modifications last year.

Hope we can help you.

Lynne Samson Executive Director

DLV

We found that we had good luck when we contacted suppliers and asked them to donate a specific item. We needed to install a concrete ramp and had someone willing do so the work. We called a local concrete company and explained our situation and they donated the concrete.

We also learned that some of the larger companies in our area (not Ford or IBM either) have funds set aside to donate to charities or individuals in need.

Try talking to the manager of your local Lowe's or Home Depot. If you need an electrician or plumber call the local union and explain your situation.

People are willing to help once they realize it is within their power to do so.

Good Luck...

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You