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By John M. Bigler The National Alzheimer's Association held its annual convention in Washington D.C., On March 18, 2000 , with the goal of raising awareness about Alzheimer's disease as well as raising money for research for the disease. I was fortunate to participate in the convention as a member of the Long Island Chapter of the Association. This year our biggest goal was to have Congress endorse a budget allocation increase of $100 million for National Institute of Health specifically for research. That may sound like a great deal of money, but consider that the fastest growing population in the country is 85 and over and that 10% of Americans born in the 1940's and 1950's will be affected by this disease. Also, compared to the billions of dollars being spent on cancer and AIDS research, money for Alzheimer's research is extremely reasonable.
My first day at the Alzheimer's convention I had the opportunity to speak with a number of Alzheimer's advocates from all around the country. Most of the people at the convention either were or had been caregivers. I am always amazed at the selfless attitude of these people who dedicate so much of their lives to caregiving and to raising awareness and money.
On Monday night we all boarded buses and went to the Lincoln Memorial for a candlelight vigil to honor all those who have lost their fight to this disease or who are still struggling against it. We also honored the many caregivers who have sacrificed so much of their own lives to make this disease bearable for their loved ones. Several caregivers spoke and sang a beautiful song dedicated to a caregiver's mother who is currently suffering from Alzheimer's. On Tuesday, a Congressional public policy hearing was held in the morning. Maureen Reagan, daughter of President Ronald Reagan and a strong advocate for Alzheimer's disease testified. Several doctors testified about the progress that is being made. They indicated that research is making great strides with the testing of a vaccine for the disease on mice. However, without continued funding, scientists who have been working on Alzheimer's disease might decide to jump to a different disease with greater funding and that was one thing that no one wants to see happen. After the public policy meeting, our various groups split up and went to the offices of the different Congressmen and Senators. All of the New York State contingent went to the offices of Senators Moynihan and Schumer. We then split up and the Long Island contingent, led by Fred M. Kadin, executive director of the Long Island Chapter, visited the offices of the various Congressman on the Island. Along with Mr. Kadin, who spearheaded the effort with his enthusiasm and positiveness, there was also Catherine S. Brewer, Mary V. Koch and Katherine M. Bensen who have all been caregivers and who have all had a tremendous impact over the years in convincing Congress to provide the necessary funding. In addition to being caregivers, each of these women have suffered physical problems, but have never let those problems interfere with their lobbying efforts. Elder law attorney, Ron Fatoullah and I tagged along. The overall feeling was positive. Congresspersons King, McCarthy and Ackerman all agreed to be actively involved in a Congressional Alzheimer's Committee. When we left, the overall sentiment was positive. Whether or not we receive the entire $100 million and get HCFA to be more understanding of Alzheimer's patients remains to be seen. In the meantime however, our chapter will do everything it can to continue to raise awareness and money for this disease. Reprinted with permission of the Suffolk Times © 2000 [ Contact Us ] [ Guestbook ] [ Email ]  The Law Offices of John M. Bigler, Attorney At Law 1421 Wantagh Avenue, Wantagh, New York 11793-2206 1-888-ELDER-LAW · 516-409-6565 · Fax: 516-409-6522 E-Mail: info@biglerlaw.com · Web Site: www.biglerlaw.com |
We were also pushing Congress to liberalize the Medicare laws in regard to Alzheimer's patients. Medicare makes a distinction between skilled care and custodial care. Medical treatment for patients with heart disease or cancer, etc., is often clearly skilled and not subject to scrutiny as is the treatment for Alzheimer's. There's a common misconception that care of an Alzheimer's patient is strictly custodial and therefore, not eligible for Medicare coverage, that's simply not the case. Also, in order to be eligible for Medicare home care, one must be considered homebound, and homebound regulations are very strict. People capable of leaving the home aren't considered eligible for Medicare. Many Alzheimer's patients are picked up and taken to adult day-care centers during the day, in part for themselves, and also in large part to give their caregivers a respite. Unfortunately, this day-care treatment can be used as a weapon to disprove the need for home-care coverage and so we argued that it's simply unfair to Alzheimer's patients and their families.
On day two there were a number of seminars, all designed to educate the advocate so that we could best present our case to Congress the following day. One of the best programs was given by Leslie Fried director of the Alzheimer's Association/American Bar Association Medicare Advocacy Project. She presented a fascinating overview of the Health Care Financing Administration (HCFA) that runs the Medicare program, pointed out that determinations are arbitrary and seem designed more to cut costs than to be of assistance. Ms. Fried described her association's efforts to have Alzheimer's disease considered for reimbursement of rehabilitation services such as occupational and physical therapy. As an attorney who is frequently frustrated with my dealings with HCFA, it was comforting to meet with other people around the country who had the same problems.