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Special Needs Planning

“83 Years Old and Never An Empty-Nester”

By Rick L Law,
Lead attorney, Law ElderLaw, LLP
Serving seniors and those who love them
in the Chicago metropolitan area.

My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, not to mention a little anxiety too. We have now raised four children, ranging in age from 32 to 18. After such a long run in parenting minors, it's time to move on to that more “senior” stage of being an empty-nester.

But not everyone becomes an empty-nester. And although we sometimes joke about the child who “failed to launch” due to the inability to start a career, there's another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is quite common for me to sit across the table from an 83-year-old parent who is still the primary caregiver for a child who is chronically disabled. Those parents live dreading the day that they die and their children survive them, facing a future without the loving protection of a parent.

This is the first time in all of human history that parents face the possibility of having their chronically disabled children actually outlive them. Prior to the introduction of antibiotics and other great advances in health care, chronically disabled children usually died at a young age. Now, even parents who have lived to become frail and elderly themselves may have chronically disabled children who are also senior citizens, still at home being cared for by their parents. In fact, there are times when we assist families in bringing in a professional caregiver for the aged parents, and those same caregivers begin providing necessary services to the disabled child. This raises new challenges for those parents and their children.

This type of disability is really quite common. “Developmental disabilities” are severe, chronic conditions caused by mental and/or physical impairments. Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently. Most of these physical and mental issues are evidenced long before a child reaches the age of 22, and last a lifetime.

So how can parents be assured that their disabled child will be taken care of after they are gone? Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling. This passing of the torch is unfair and in many ways ill-advised. A much better option is the creation of a special needs trust specifically for the benefit of your disabled child.

However, the most common advice of the attorney who does not practice in the area of special needs trust planning (or, as we like to call them, Tender Loving Care (TLC) Trusts) has been for the parent to disinherit the child. When you disinherit the disabled child, you leave them with absolutely no direct allocation of money. This gives the simplistic idea that one should just leave extra money to one of the other children who will provide care and money management for the disabled child. Even in the best of families, this is usually a disastrous idea for several reasons:

  • It's extremely difficult for any individual who receives extra money not to commingle that money with their own, and they often eventually treat it as their own. That money would be at risk in the event that the healthy child becomes divorced or is otherwise subject to loss to a creditor.
  • In many families, the dynamic is such that the healthy children have some anger or resentment toward the disabled child because that sibling always got more attention. Thus, healthy children often don't want the role of caregiver and banker for their disabled sibling.
  • And most unfairly, leaving money to one child for disbursement to another child puts a target on the back of the healthy child, because they then receive all complaints and concerns about that money.

It is the task of the elder law and special needs attorney to assist families like this in developing proper planning so that we can help the parents to create a better way to manage both money, and care, after they are gone.

A TLC Trust is designed to work in partnership with any public benefits such as Supplemental Security Income, or Medicaid. It's a way for parents to leave money for the needs of their child, beyond what public benefits would pay. A TLC Trust can provide supplemental care for recreation, social activities, pets, special therapies, entertainment, and even vacation opportunities for a child by the use of trust money. A TLC Trust can also purchase professional care management, which can enhance the dignity and quality of life of a disabled child. The TLC Trust is a far more loving and caring solution to the challenge of providing for a child with special needs.

Please don't disinherit your child with a disability; contact an elder law attorney who can assist you in designing a customized plan to meet the very special needs of your child, so that he or she can be given tender loving care after you have passed away.

Make Life Better Today

Think about how your special-needs loved one will be affected by the aging process or Alzheimer's diagnosis of their caregiver. The caregiver in this situation may eventually become the care recipient – a dangerous occurrence if there are no provisions made for the future of the special needs person.

Make Life Better This Week

Email this page to your family members, with a loving not about your concerns.

Make Life Better This Month

Make an appointment with an attorney who specializes in special needs work.