When asked whether I am busy in my practice, I always make reference to the fact that the population is aging and that there are 77 million baby boomers beginning to enter senior status this year. As more people enter the long term care system things will only get busier. There is, however, another trend, highlighted in a recent New York Times article, that is developing at the same time. At least 500,000 children with autism will reach adulthood in the next 10 years.
I have written in the past about some of the issues facing parents of disabled children who become adults. Parents may not automatically make all decisions, financial and medical, for their children. The children must either sign a power of attorney and health care directive or the parents must petition a court to declare the child incapacitated and have themselves appointed guardians.
While it is important to address the issue of decision making, that is only a part of the problem that many families will face in coming years. Services for adults with disabilities are not mandated in the way that school age education is for children. These adult children will face many of the same issues that aging seniors, eventually their own parents, will have to address. That won’t be easy as the government cuts services and programs to save money and there are fewer working-age adults to provide the necessary care.
For example, many parents are unaware of how difficult it is to move a child to a group home setting. The demand for this type of housing far outstrips the supply and the trend in many states is to get away from group housing because it is costly. That leaves many families unprepared for the possibility that their disabled child may live with them for many years, perhaps until the parents die. But, then what becomes of the child?
Well, that typically will fall to the non-disabled siblings and other family members. Imagine what you would do if you suddenly had the responsibility of caring for a severely disabled person. Would you be able to take the person into your home? Do you have the space to do it, the proper environment, the financial means, the emotional and psychological strength to do it? For most people the answer is no or not without great difficulty.
The services available and the system in place to assist the disabled is even more of a patchwork, than is the long term care system for the elderly. Financially, the disabled are generally worse off than seniors, most of whom were part of the work force for many years and accumulated some amount of wealth that their families can apply towards their care. Not so for the developmentally disabled, such as those who are autistic. Whatever funds available for their use will be provided by their parents.
Which is why it is so important for those parents to set up a plan now, while they are healthy, before they spend all their assets on their own care, leaving their surviving family members with the problem of providing quality care without the funds to pay for it. That’s a sure recipe for disaster.