My mother, who was 88 years old and had advanced Alzheimer's disease, along with a host of other medical problems and physical disabilities, died at my home in November. And it hurt.

I have to admit, though, that I felt a sense of relief when my mother died. But it is not for the reasons that you might expect.

My relief was not because my mother had Alzheimer's and increasing physical needs.

To be sure, it is profoundly sad when the person who brought you into this world, nurtured you when you were young, and taught you basic lessons in life becomes a different personality than the one who raised you. Once you understand the nature of your parent's condition, you adapt. You can appreciate glimpses of humanity and former personality, despite the failing memory and inability to articulate thoughts.

There was a human being--my mother--inside of what superficially appeared to be an empty Alzheimer's shell. My own five and eight year old children helped teach me this. For them, my mother was "Grammy," and they loved her for who she was.

Nor was my relief due to the fact that my mother lived at my home with my family. For the past four years or so, we hired caring and committed aides to help support her for about 13 hours per day.

Now, I also have to admit that it is not always easy to have non-family members in your home day in and day out, and you necessarily sacrifice some family privacy. For us, the advantages of having aides here by far outweighed the disadvantages. We got to know some wonderful people, and my children formed strong positive relationships with some of the people who cared for their Grammy.

The sense of relief that accompanied my mother's death was due to the fact that her funds were running out and by next spring we would have been forced to ask for public help to keep my mother in our home.

You see, over the years, we spent roughly a quarter of a million dollars of my mother's money--what some people in some families might view as their inheritance--to pay for her aides. And we paid the aides fairly well, over $10 per hour, far above what any nursing home or home health care agency pays.

We played by the rules. We did not try to squirrel away my mother's funds to make her prematurely eligible for public assistance. People should not ask for help from the government or the community unless and until it is absolutely necessary.

When my mother's resources ran out next spring, she would have become eligible for Medicaid, the federal/state/county health care "safety net" program for people of limited financial needs. Medicaid--our federal, state, and county tax dollars--will readily pay over $40,000 per year if you want to place your Mom or Dad in a nursing home. What if you are willing, able, and competent to arrange support for your parent in your own home?

You quickly find out that the "system" would rather use our taxpayer dollars to put your parent away in a nursing home than to provide the same funding to keep your Mom or Dad in your home.

Here in New York State and Onondaga County, home care can cost no more than 90% of the average costs of nursing homes.

Even more significant, you can only obtain publicly funded home care through a certified home care agency. This seems reasonable until you examine the economics of the situation and the capacity of home care agencies to recruit dependable and caring aides.

Home health care agencies typically charge the government $13.50 to $16.50 per hour for home aides; yet most pay their aides barely above the minimum wage. During my own mother's final days, she was eligible for short-term aide services for two hours per day through the Medicare program, which pays for health care for the elderly. I requested this minimal amount of help from a major visiting nurse and home care agency that charges the government an astounding $25.50 per hour for home aides. A representative informed me that it was doubtful that the agency would be able to find aides to help us since we live 15 minutes outside of the city and most aides do not have their own transportation.

If the "system" would have been willing to provide me with the same amount of money to care for my mother in my home as it does to place older Americans or those with disabilities in nursing homes, we could have maintained my mother with our family indefinitely.

The "system" is not concerned with helping people to fulfill familial and community responsibilities. It is concerned with "cost-effectiveness" and "fiscal responsibility"; hence, the 90% home care cost rule and the requirement that a major proportion of our tax dollars must go to agencies.

I was faced with the very real possibility that I might have been forced to place my mother in a nursing home. I would have done this not because it would have been good for her, not because my family and I were unwilling to deal with inconvenience, and certainly not because this would have saved taxpayer dollars.

In the name of fiscal responsibility, the system is prepared to pay to place your family member in a nursing home even though you can do a better job of caring for him or her at equal or lesser public expense.

Who is the system?

The system includes legislators and bureaucrats in Albany who pass laws and write regulations such as the 90% home care cost rule and the requirement that the bulk of public funds allocated for the care of elderly people and those with disabilities goes to nursing homes and home health care agencies.

It includes county long-term care officials who never question the wisdom or fairness of state rules and, even worse, advise elected officials that reforms in the Medicaid program are unnecessary.

The system includes those in the nursing home and home health care industries who have lobbied against changes in government policy that would make it easier for people with disabilities and elderly people to live with dignity at home.

And the system certainly includes federal representatives who refuse to lend their support to the federal Medicaid Community Attendant Services Act (MiCasa), which was introduced in the House this year and which would require states to offer elderly persons and people with disabilities a choice between home care and nursing home placement.

For over 25 years now, I have studied public policy in the area of disability. Now I understand first-hand what many people with disabilities and family members have been telling me all of these years. The "system" hurts.

Steven J. Taylor, Ph.D. is Director of the Center on Human Policy at Syracuse University. His e-mail address is staylo01@mailbox.syr.edu