DeansWife, the VA may have given you a wrong impression because they didn't understand his disease. Nearly no one understands what ALS really is, not even the nurses and certainly not the administrators.
Even though you have income above the limits, they can treat your husband. Get a wheelchair, roll into the Enrollment Office at the VA Medical Center (it's a long wait but worth it), ask for help filling out the paperwork, and impress upon them that he is Catastrophically Disabled. They can assign him into Priority Group 4 and start treating him immediately.
You have got a WHOLE LOT of help for you in that area. Call the VA 800 number and ask which VA Regional Office has got your paperwork. Tell “Peggy” to send the VARO a message that his ALS has progressed: He has lost the use of both feet and legs. Does he also have weakness in his hands? You are probably eligible for Special Monthly Compensation Level R2, which is more money monthly than you can imagine. At the very least, this phone call should get you on the fast track.
Also, you can drive up to your VARO and see the Public Contact Team, to give them any new doctor’s notes or EMG tests. Once you’ve got the sympathy of someone in the VARO office, they can go find your C-file and get the claim fast tracked.
When my wife’s legs were useless, I carried her a lot. One day we fell, and I called EMTs to pick us off the floor. They’ll do that. They’re really big guys, and they like to help. VA will pay that bill, as would Medicare or Tricare.
Ask your VA medical center’s Beneficiary Travel (Bennie Travel) office to set you up with a Special Mode of Transport to pick you guys up to take you to appointments.
Also ask the Disabled American Veterans (DAV) what they can do. They have the contract with VA to transport veterans free of charge.
A transport chair is like a wheelchair, but it has smaller wheels and is generally for indoor use only. The VA issued us two transport chairs: one that is designed to wheel into a shower, and another that converts into a sliding shower chair that slides on rails over the bathtub wall to become a shower seat. Both of our transport chairs also have bucket potties, and both can roll over the top of a toilet so you can poor into the toilet while sitting on the transport chair.
ADA trumps HOA. Even if you’re renting (I’m renting, too.), your landlord can do whatever is needed to modify the house. The VA can also modify a rented home, with the landlord’s signature and yours.
Don’t skimp on a homemade ramp. The wider, the better. You don’t want to make it too steep. It’s really scary if you’re paralyzed and start to lose control on a ramp.
VA had a contractor put three ramps on our rented house: one in the garage, and one each back and front. It’s required to have two ways out of the house. My ramps are metal, or installed with only two screws, and they can be easily removed from the concrete.
Also, I picked up some rubberized “deck tile” at the Home Depot garden department, and made a little wheelchair sidewalk across my yard, quick and easy.
There are four ways to get VA to pay for your house modifications. The big $66,000 grant is for homeowners, and can be used to buy a home, as well. That’s a really nice down payment. Then there’s a $12,000 grant that you can also use, even if you used the big one, too. Also, the prosthetics department at your VA medical center can do whatever it takes to prepare your home. Finally, the Vocational Rehab (VRE) people can use Chapter 35 funds to buy anything at all to give the veteran the best quality of life possible. They have been known to buy entire woodshops and photography studios for vets who can’t leave their houses.
We drove the distance to Tampa VAMC, because they have an outstanding ALS Team and SCI Clinic. (You can use any VAMC you want.) They are experts at providing and fitting a power chair quickly. We used the Permobil C-400 with a ROHO inflatable seat pad, which is MUCH more comfortable.
Also, they put us up at hotels so we could rest both before and after our appointments.
Of course, the vehicle grant is super. We bought a $35,000 Honda Odyssey with a $35,000 Braun modification for the power chair. The Permobil Permalock is easy to use, just drive the chair up the ramp into the van, and turn into the passenger side, then push a button and, “click,” the power chair is automatically locked into place in the passenger side. Total cost to me for the van was $9000 cash and a trade in. You get a new van every two years. The van dealers know all about how to do it.
Some vans are cheaper, but we went first class. Love the sound system.
VARO will also give you a letter telling you that you’re eligible for Social Security Disability payments. Also, VA will pay Dependents Education Assistance which you can use anytime during the next 10 years.
You’ll need to keep a notebook of all the people and what they do, because NO ONE in the VA is aware of all the neat services and benefits they have available for you, so you’ll be relying on a dozen different experts, each one is only knowledgeable about their own little area.
Like I said, you’ve got a lot of help available to you that you probably didn’t even know about. Get to know your VSO and PVA rep, and get on a first name basis with the ALS Team and the Prosthetics Dept. They really do look forward to helping out as much as possible, as do I.