During the last century, the life expectancies of ordinary Americans increased tremendously. At the same time, advances in medical science have enabled special needs children to live longer and fuller lives than what was considered possible just a few short years ago. For example, the life expectancy of children born with Down Syndrome has more than doubled from around 25 years in 1983 to over 50 years in 2008, according to the New York Times.
But while parents are living longer than ever, they may not be able to continue providing the same level of care to their special needs child as they develop their own need for long-term care in their later years. For elderly parents and special needs children alike, the cost of care can be astronomical.
Of course, no one can care for your child like you can, but that doesn’t mean you will be able to care for them forever. That’s why you need to have a formal, written action plan in place, which should include information about housing, financial, social, medical, and other issues.
You should also review your estate plan. Many special needs children rely on means-tested government programs like Medicaid and SSI for help. By leaving even a tiny inheritance to your child, you may inadvertently disqualify them from receiving these valuable benefits. Using a planning device called a Special Needs Trust can protect assets to be used to pay for a child’s supplemental needs (i.e., expenses not covered by government benefits) for years to come. And, if you plan far enough ahead, you may get the added benefit of protecting these assets from being used up on the cost of your own care, should you ever enter a nursing home.
Finally, it’s important to ensure that you have the proper documents in place to appoint someone to act legally on behalf of your child. In addition, the law assumes everyone is legally competent until proven otherwise. Therefore, if your child is an adult and no guardian has been formally appointed by the probate court, you might not be their legal guardian.
The planning needs for parents of adult special needs children change over time. If you haven’t reviewed your plan recently, talk with an attorney who practices in the area of special needs planning.
This article was published in Prime Lifestyle Magazine - May/June 2013 Edition