Suggestions for transporting wheelchair?

[acmcdowell]

Hello everyone,

I am new to these forums and am a caregiver to my mother who was diagnosed with ALS in Dec. 2007. She is progressively getting worse and requiring more equipment to help with daily living. She has Medicare only (no supplemental insurance), so in a matter of several months it has been easy to deplete our savings having to come up with 20% of everything she has needed so far. My question is how do people manage with this disease when there is not a lot of money? Specifically, we have no way to transport her with her wheelchair. Medicare will pay for her to go to her quarterly doctor appointments, but otherwise she is homebound and just wants to get out. Does anyone have any cheaper alternatives to transporting a power chair? We cannot afford a handicapped van. I appreciate anyone who can offer some advice!

 

[joelc]

Sorry you find yourself in this situation! I can sympathize with your dilemma as I don't have any insurance to pay for anything either. The ALSA here has provided a wheelchair etc. but transportation is a big issue. We found a used Van that was already setup but it went on Visa which is coming back to haunt us. LOL I wish you luck in finding a solution.

 

[brooksea]

Sorry about your mom! I know where you are coming from. It's not cheap!

Just to let you know, you can fill out a "financial waiver" form from most companies when purchasing equipment. They will then write off the 20% that Medicare doesn't cover. These forms are necessary and must be kept in case the company is audited by Medicare. Medicare gives the companies authorization to write the 20% off. (this is what we were told anyway)

It wasn't easy for us the first time to fill out that form, but if ya ain't got it - ya ain't got it!

As for transportation, you may want to contact Stu Millheiser at the ALS Guardian Angels. You can apply for a grant or he may have a van that he can make arrangements for in some way.

Vans are a lot cheaper in the southeast and you may even be able to find one (older model) that has a lift already installed for the amount of the grant. Usually that will be from an individual that wants to get rid of the van, as it no longer serves a purpose for their family. :sad:

My husband says just get a ramp and put him the back of his old beat up pick-up truck! :roll:

Good luck! Hope that was helpful!

alsguardianangels.com

 

[DgtofTNfan]

Thought I would mention Medicaid if you have not already looked into it. I checked out South Carolina's Medicaid website (assuming your Mom lives there too.) It looks similar to KY.

In KY, there is Medicaid and there is also a program called Medicaid spend down. The spend down looks at 3 months worth of bills and is factored against a formula to determine if a person is eligible for the Medicaid card if only for the 3 months. This helps people with hospital bills and expenses such as your Mom that has Medicare and is responsible for deductibles and 20%.

If by chance your Mom is eligible for a standard Medicaid card, there are usually transportation vouchers to/from medical care as well as prescriptions and coverage for the 20% if she meets the criteria. Worth looking into if you have not already. Here is the SC Medicaid website.

http://www.dhhs.state.sc.us/dhhsnew...ht/Partners for Health (Medicaid) Program.asp

Also in Louisville we have public transportation for wheelchairs that is door to door for the disabled and is $2 one way. Looks like your state has a Dial a Ride program and there is more info on this South Carolina Assistive Technology Website..

http://www.sc.edu/scatp/transportation.html

SCATP staff hopefully can direct you to a program where people network to donate/sell/trade used assistive technology amongst each other to include vehicles. This would be similar to the ALS societies but serve a larger disability base for more options.

KY also has a senior program that helps people who are 60 and over with transportation that works through the Red Cross. I would call the social worker at the local dialysis center because this a common problem for dialysis patients and the social worker will know the options and limits of where you live. If you have an ALS chapter rep in your area they may also be helpful with options.

Having said the above, public transportation bites and a private vehicle is much more dependable and less stressful so if as recommended ALS Guardians could help, it will be huge. I will be interested in what others say as well.

If your Mom is a a veteran there is a $11,000 vehicle modification grant. I am not sure how that works as my Dad has applied and the application is still pending. I learned about that on this forum.

Hope this opens some leads for you.
Dana

 

[ses76]

Our town and surrounding towns have a van that's free for community members. It's like a taxi but you need to schedule it ahead of time. We used it with my dad and his power chair. You really need to look into community resources...for transportation and equipment...this is how we've managed to not go broke so far! Mom is panicked about spending b/c we're not sure what kind of/length of in home care we'll need and we *know* that's not covered. We've gotten wheelchair, commodes, shower chair, stairlift, powerchair, and a lot more ...from different organizations in the area. ALSA is great and can usually connect you with whatever is available in your area.
I'm sorry you're dealing with this at all. I know we felt like the progression was happening faster than we could be prepared for at certain points...it was frustrating b/c I felt like the ALS clinic was good when we were there but the anticipatory guidance was nonexistant...
Best of luck to you and hoping you can get your mom out and about soon!

 

[acmcdowell]

Thanks everyone for the wonderful advice...I haven't been on the ALS forums very much, but just reading through a lot of things last night, I realize what a wonderful resource this is. And for the record...I discussed it with my mother today, whenever we don't need all of these things we have acquired...I will definitely "pay it forward", no questions asked. All I want to do is help those who may not have the means to get the things they need for this disease. You all have wonderful week, and I will definitely look into everything mentioned.

 

[hopeful warrior]

acmcdowell~

MDA helped us with my husband's power wheelchair. Please contact your nearest Muscular Dystrophy office and see what they can do for you.

This is a great place for information, as well as venting. These folks are eager to help any way they can. Best to you!

 

[newbie]

Disabled bus transportation

We live in a greater metropolitan area in the Pacific Northwest which is well served by mass transit. We also do not have the finances available for a wheelchair van. I inquired with our local community transit (bus) office and found they have a program for door to door bus transport at $1.50 one way, including transfer to the next county's bus system (if you're traveling that far). Caregivers ride along for free, just mention it when you make the reservation 1 week to 1 day in advance. They sent an application out which we completed and returned. We provided medical information but they did not contact the Dr. It took about 2 weeks. We can make reservations for any reason...medical, social, grocery store, to someone's house or a movie, or a restaurant.... the location just has to be within 3/4 mile of a regular route. The disabled bus has a wheelchair lift and the driver straps the power chair or wheel chair in place. The doctor's office is about 20 miles away and crosses county lines so we have to transfer buses, but they arrange all that for you when you make the reservation. Perhaps there is something similar in your community. For a destination "off route", then we might need to hire "cabulance" or specialized wheel chair transportation company - you see them arrive all the time at your regular hospital and can just jot down some names and numbers to call them. Locally, it's about $40 to show up and 0.30/mile. That could be expensive if you use it a lot, but if have patience, and can plan ahead to use disabled bus system (sometimes called para-transit) you can go just about anywhere for very little money.

We take our first bus trip tomorrow. I don't expect it to be the most pleasant, but we can both go for less than half the cost of parking alone at the medical center. It seems wise to try it out on a "regular" appt. rather than at a time when somone is feeling sick to begin with.
good luck with your transportation quest!

 

[mvoet]

If your mom can be moved from the power chair into the car seat, you can use a hitch mounted wheelchair carrier. It will require a hitch on your car and the carrier. Total would be less than $500 (and you can get a lot cheaper than that). Downside is that the chair is not protected in bad weather since it's outside the car.