VA versus Medicare for PALS - Eligibility

Many PALS have done military service and have Medicare insurance due to age or receive Medicare due to their Social Security Disability Benefits. The purpose of this paper (divided into a few separate posts) is to compare the two programs, Medicare and the VA, with respect to benefits for PALS. Hopefully it will serve as a guide, helping PALS decide which programs are advantageous at each of the succeeding stages of the disease. The information in this paper, especially with regard to benefits, reflects my own experience with the medical treatments and services I have received for my disease.

1. Eligibility

VA:
i) To begin the process at VA, you must go to the Eligibility Office in the main lobby of the local VA Medical Center (which in the DC area is located near Washington Hospital Center and Catholic University.) You must bring with you your military discharge paper (form DD 214) and information on your financial condition such as a net worth statement and tax return, and enough medical records to establish that you have a firm diagnosis of ALS.
ii) The eligibility officer will enter your data into the computer and, as happened to me, tell you that your income makes you ineligible for benefits. Insist that you are eligible because you have a catastrophic disability that puts you in Category 4 and makes you eligible for VA benefits because of your ALS diagnosis. The $35,000 a year income cap does not apply to veterans in Category 4.
iii) The Eligibility Office will then assign you to one of the six primary care sections at the hospital and schedule an appointment with a primary care physician to get the process of providing services and treatment started.

Medicare:
i) In order to be eligible for Medicare benefits, especially if you are under the age of 65 and not able to work, contact your local Social Security Administration office and apply for Social Security Disability Insurance (SSDI). When you are approved for SSDI with a diagnosis of ALS you will also receive Medicare Insurance. As in the case with VA, you must provide sufficient medical records to confirm your diagnosis. As a result of the successful lobbying effort by the ALS Association, you will receive SSDI and Medicare insurance after the SSDI waiting period of 5 months.

Benefits for PALS who are veterans

About a year ago, I learned about programs offered by the VA for PALS who had done active military service. The VA doctor visited the George Washington University ALS Clinic. She was interested in setting up a similar multi-disciplinary clinic at the VA Center in Washington, D.C. I learned from her that, even with as little as two years active duty, I was eligible for some VA benefits that would help me defray the costs of this disease.

The VA offers two programs for PALS vets: the first program provides major medical benefits. The extent to which a veteran can enjoy these benefits depends on whether he or she can prove that ALS is service-connected. The discussion of health benefits which follows covers programs offered by the Washington VA Center and may not apply to all other VA Centers in the country. The second major program provides pension benefits for disabled vets. Again, service connection results in more benefits and the VA goes through a detailed disability assessment to determine the level of pension benefits.

The extent and quality of the VA medical benefits I am receiving from this facility is outstanding. The doctors are excellent and highly knowledgeable. Because my illness is not service-connected, I am not eligible for all the benefits offered; for example, a grant to help cover the cost of a van conversion. I have not applied for a VA disability pension because many other vets have a greater need than I for this support. The local chapter of the ALS Association has worked closely with the DC VA in the cases of PALS veterans. In the area of medical benefits, ALSA has helped to increase VA support. In the pension area, it will take a great deal of time and effort to get the VA to tailor its disability criteria to the vets with our unusual disease. The progression of ALS rapidly reaches the condition of total disability but the military yardstick is more appropriate to vets who have lost a limb. Many PALS with full military careers have found it very difficult to get disability benefits commensurate with their condition. ALSA is putting together a briefing package on VA benefits that I contributed to; it should appear on their national website soon. What follows in the next few posts is a piece which will summarize the medical benefits I am receiving from the DC VA Center relative to those that I am familiar with under Medicare.

More (gasp!) on bowel issues

Thanks for the good responses to my TNT recipe. I know that everybody’s situation down there is different; therefore I do not offer my solutions as a golden rule. As George Bernard Shaw said, “Do not do unto others as you would have them do unto you; their tastes may differ.” The same goes for bowels. I will visit this area again when I do my series on best practices. I know you’ll be waiting with bated breath!

Tony's TNT - The Recipe

Ingredients
1 cup raisins
1 cup pitted prunes
1 cup figs
1 cup dates
1 cup currants
1 cup prune concentrate (juice)

Combine contents together in food processor or blender to a thickened consistency. Store in the refrigerator between uses.

Administer 2 tablespoons twice a day (morning and evening). May increase or decrease dosage according to frequency of bowel movements.

Nutrition:
2 tablespoons
61 calories
137mg potassium
8 mg sodium
11.9 g sugar
0.5g protein
1.4g fiber

We add more prune juice to thin out the mixture and make it easier on the blender.

This recipe can not be used through a feeding tube. "Don't try this at home"

Source: The Journal of Geriatric Nursing. Volume 28, Number 2 Article titled" "Pilot Study of the feasibility and effectiveness of a natural laxative mixture."

Recently I have needed to supplement the TNT with a dulcolax suppository to get things moving. The TNT works from the top down and the dulcolax from the bottom up. A match made in heaven.

I'm interested in hearing what others have found effective. I'm especially curious to hear from those of you who rely entirely on a feeding tube.

The Rocks and Shoals

I would like to share with you some of the ways in which I have dealt with the milestones in this disease. My philosophy was to prepare myself in the best way possible for each succeeding stage. Does this make me a micro-manager? Borderline OCD? Yes I guess so. It’s probably partly genetic and partly because I worked for a guy who didn’t like surprises.

1. Before I fell hard enough to break something, I "graduated" from walking to a walker and then to a wheelchair.
2. Before transfers because difficult and risky I chose to use an Easy Pivot device (http://www.saratoga-intl.com).
3. To avoid the possibility of waiting too long, I got myself a feeding tube.
4. To avoid locked muscles, I had the baclofen pump implanted. My range of motion remains good.
5. In advance of a sharp decline in my breathing function, I got a BIPAP machine and use it at night. I am convinced that it has slowed down the deterioration of my breathing function.
6. Anticipating the decline of my speaking, I first purchased voice-recognition software allowing me to speak to my computer.
7. As the volume of my voice dropped, I got an amplification device, which makes speaking less tiring.
8. To get ready for the time that I would not be able to speak at all, I got a speech communication device that I can operate by headpointing.
9. I moved early to a condom catheter, which removed all of the stress dealing with that bodily function. I also prepared for the loss of bowel muscles by using a wonderful recipe I found online; a natural blend of fruits, which keeps things moving. I call this Tony’s TNT. (I'll post the recipe shortly)
10. To get ready for the point where accummulation of mucus and saliva would result in aspiration, I got a suction machine and a cough assist device.
11. To deal with pseudo bulbar I got a prescription for Zolof. Now I don’t cry at concerts anymore.
12. I enrolled in hospice while my breathing function was still fairly good because I strongly believe that the palliative care services they offer are a great comfort to ALS patients.


I believe that avoiding the rocks and shoals prolong your life expectancy. Do you agree or disagree? I'd like to hear from others.

The Weekend from Hell

I got a D- in navigating this weekend. I’m getting into the bad phase of this disease. My voice is going very fast. My bowels are a mess. I can barely operate the joystick on my chair. On top of all of this frustration my computer crashed as I was trying to set up a video-conference with my grandkids in California. Susan and I ended up suffering a mutual meltdown. In my next post I am going to talk about how good I’ve been at anticipating my needs. This weekend was a blow to my belief that I can navigate through this disease without hitting any rocks. The one high point of the weekend happened when Susan and I went through my email address book and sent off a link to this blog. I got some very nice replies.

So to those of you reading this blog. Have you too failed in navigating on any given day? How have you coped with the issues at hand? We can all learn from each other…

"Fighting" ALS

In writings about cancer and many other diseases, there is talk about fighting because fighting is associated with the possibility of recovery (i.e. beating the disease). I think ALS is different. The literature on exercise for ALS patients is divided between those who believe active exercise can prolong life and those who believe that such exercise can accelerate muscle decay. For me the key is conserving strength. I’m not proud, I’m not stubborn, I’m quintessentially pragmatic. For example, I didn’t fight going into a wheelchair, I embraced it. My philosophy is that as PALS we should “navigate” through ALS, avoiding the rocks, shoals, and sandbars that mark our trip. The end point is the same, but getting there in the right way makes quality of life bearable and even extends life expectancy. We should leave fighting to the researchers. The problem is there are only 5,000 new cases every year. Until a marker is found for ALS, the big pharmaceutical companies won’t choose to spend money on treatments.