My father is 76 years old and has alzhemier’s disease. He has been seen by doctors at Johns Hopkins Medical school who say that is chances of recovery are almost none. He cannot walk, bathe, eat, dress or go to the bathroom without the help of a nurse. He is rarely coherent and can manage only a few words if he is lucky. I would think that he would fall under the category of being “disabled” by anyone’s definition.
The emotional and monetary drain of this disease is probably the single worst thing that has happened to my family. We never expected our father to be in this state and it is hard to watch him deteriorate on a daily basis. Also, we never bothered to obtain long term care insurance so the financial burden of caring for my father rests squarely on my mother.
I called the Social Security Administration(SSA) to see if they can provide some financial assistance since my dad requires a full time nurse. Obviously this is a very big and real expense(ranging over $200/day in Fairfax County, Virginia ).
Long story short, the SSA said they will provide no assistance to my father since he is over 65 years old and has over $3,000 worth of TOTAL assets. If he were younger than 65, he would be ELIGIBLE(and I use the word eligible in the most restrictive sense) to apply for disability benefits. If anyone has ever tried obtaining Social Security Disability benefits then you know that your odds of success are very slim. I would predict that my father, who no doubt is completely disabled, would have a 30% chance of obtaining benefits if he were younger than 65 years old.
Nevertheless, there is a program offered by Social Security that offers assisstance if you are over 65 years old and disabled. It is called Supplemental Security Income (SSI) and it would provide approximately $560/month to help care for the disabled. Although it is only a drop in the bucket, when you are caring for a loved one you need every penny you are entitled to receive. There is a catch with SSI, as you will see with many government programs, that if you are disabled and 65 you cannot own more than $3000 in total assets. This virtually eliminates any individual who ever tried to make something of his life and work for a living. Your reward here is that you are not worthy of health care.
After exhausting the SSA route, I called Medicare to see what help they could offer. Short answer on this one is little if no help. After going over my father’s condition with the representative, she told me there was no program that he would qualify under. I asked her that I thought that one of the benefits provided by Medicare is home health care. (By the way, you can get a summary of medicare benefits at www.medicare.gov. The benefits are confusing and illogical so don’t get discouraged if you don’t understand them. I am an attorney and I found it difficult myself.) The representative corrected herself and said “yes you are right, I meant we offered no ‘custodial care.” There is a distinction, according to Medicare, between home health care which is “covered” and custodial care(i.e. nursing home) which is not.
My eyes actually lit up when I heard the Medicare representative actually say the words that it was a “covered” benefit. This feeling was quickly dismissed once I discovered the benefits of this “home health care” which are virtually none. Although I have no doubt my father would satisfy the requirements of disability the benefits are not useful. The process is as follows: you basically have to get a letter from your doctor confirming you are 1) disabled; 2) you need medical care at home; 3) you need intermittent skill and speech therapy or physical therapy; 4) you are home bound. Then Medicare puts you in their system to decide if you are worthy.
After you get through all the red tape, you will discover that your benefits aren’t worth the trouble you went through to obtain the benefits. Beside the fact that you must use an approved “home health care agency” designated by Medicare, they are only allowed to come to the house for 1 hour visits with restrictions on how they can help my father. Now tell me how a working woman, who does not have the time to stay home full time to care for her husband, is going to really benefit from someone maybe coming 1 hour a day for maybe 3 days of the week. How does that really help? Is this a good use of resources?
In my opinion, long term care and incapacity planning need to be addressed by individuals and planners long before the need arises because the government’s solution is no solution at all.