want to make it easier...

jamorel · 02-02-2012, 07:28 PM

So I want to add links to Hope for Joy that will help people in Canada and the US to gain access to legitimate funds as we know the first issue after the reality of diagnosis sets in is, how the hell am I going to afford all of this. Also travel insurance...it seems to come up often.
Do you have any links I should include?

Ms. Pie · 02-02-2012, 09:10 PM

We're all looking for those links Dear.

Toto's Dorothy · 02-03-2012, 12:08 AM

When you find any, give me a ring please!

Toto's Dorothy · 02-03-2012, 04:38 AM

Bathroom renovations, transportation and any major medical purchases, we could use help on.

jamorel · 02-03-2012, 06:38 PM

Damn, really? Frig, I wish the system was more clear cut. Okay...I will dig and dig and get back to you. I am in Canada which will be different from the US, but let me see what I can find on both fronts.

jamorel · 02-03-2012, 07:14 PM

if you have information but do not want to comment on the forum, please email cureals@hopeforjoy.ca...I appreciate any information or help you might have on this topic.

jamorel · 02-04-2012, 02:14 PM

in previous threads (yes, I did search threads on this) I saw a great idea about putting together a book. This was for CALS to ensure all of the paperwork was in place.

jamorel · 02-04-2012, 02:33 PM

Alberta ALS Society has this booklet - seems a lot relies on independent insurance agency coverage. There is another Gov. fund to apply for, but you have to somehow prove you are in the late stages of life with less than 24 months to live. nice. ugh. http://www.alsab.ca/_media/docs/manual.pdf#page86

jamorel · 02-04-2012, 07:24 PM

Joy's husband assures me that they would have been covered through insurance and government funding. I will learn more. I do like the idea of a "binder" for everyone with PALS with all of the information needed with tabs so that CALS have a place to refer to as a resource.

HelenL · 02-04-2012, 09:14 PM

I think part of the problem in the U.S. is unless you're a vet, you have to rely on your own private insurance, and every state has different programs to help disable people retrofit their homes.

Toto's Dorothy · 02-04-2012, 09:33 PM

Unfortunately here there is a waiting list to just to get on and could take six months or longer. Also, that is for bathroom renovations up to. $5000.00. That helps but what about transportation? Try paying $40,000.00 for a vehicle, even a used one is out of my price range.

rcharlton · 02-05-2012, 08:08 AM

Quote:

Originally Posted by jamorel

Joy's husband assures me that they would have been covered through insurance and government funding. I will learn more. I do like the idea of a "binder" for everyone with PALS with all of the information needed with tabs so that CALS have a place to refer to as a resource.

The ALS Society of Canada does hand out such a binder.

momap53 · 02-05-2012, 09:26 AM

Jamorel,

In the US a local social worker can put you in touch with resources within your own community that can assist with funding for some projects around the home. In SE GA we have a Center for Independent Living which is primarily funded by the US Department of Education. Some of the modifications they offer are: hand-held shower, grab bars, ramps, etc. There is a requirement for financial documentation and you must meet the eligibility requirements. A permission document from the homeowner is required. The funds are limited to $1,800.00 and you are required to pay 10% of the cost up front and anything over the stated amount. Currently there is a 6-9 month wait for services once the application has been completed. They do offer a few other services as well.

Everyone in the US with an ALS diagnosis should register with the MDA (Muscular Dystrophy Association). als.mda.org.

We received an extremely helpful packet of information from their ALS Division. Chapter ten of their Handbook called Everyday Life with ALS: A Practical Guide has an extensive list of Resources including their addresses, phone # etc. It also includes a wealth of other info including a pictoral guide to exercises that are appropriate for PALS. They also publish MDA ALS Caregiver's Guide which is an excellent starting point for CALS on this journey..

jamorel · 02-05-2012, 11:19 AM

I see Jane at our local society has composed a very useful booklet. This is from the ALS Assoc. state side - http://www.alsa.org/assets/pdfs/broc...sa_manual1.pdf
...so is it fair to say that it may be a federal issue where policy may not be timely or flexible to meet the needs of those with ALS who need funding ASAP and whose needs are changing almost every day?

ltbeauti · 02-09-2012, 10:14 PM

At UVA ALS clinic they gave me a binder. It was a big help. I am working on one for my local ALS Chapter to hand out to PALS/CALS.
Thing is that they need to be updated regularly. The UVA one had a bunch of outdated ALS Assoc. material in it.