Planning for the continued care of your disabled child after you’re gone

One of the most pressing issues for parents with a disabled child is probably the concern about what will happen to their child when they become incapacitated or die. This issue often is so difficult that the parents have a difficult time in making decisions, and therefore procrastinate to the extent that nothing gets done until very late in life.

It is estimated that there are over 700,000 adults with disabilities who have parents over the age of sixty in the United States. This statistic reflects the need for people to plan in advance. Once a plan is prepared, it is relatively easy to amend or change it as times change.

For instance, the selection of a guardian for your child when he is a minor may be about who is best able to suit his needs at that age; and this may be his grandparents or possibly an aunt or uncle. As time goes on, it may be better to appoint someone who is younger, such as one of the siblings of your disabled child, when they are mature, responsible and ready to take on the future needs of their disabled sibling.

In preparing the plan for your disabled child, the usual documents should be completed, including a Health Proxy, Will and Power of Attorney. However, a "so-called" simple Will may not be sufficient to attend to your child's needs. You might need a Special Needs Trust in addition. This will protect your child against losing governmental benefits available to him.

The Trust becomes the primary document that provides for your child's needs to the extent that medical care, food, shelter, etc. are not otherwise provided. The funds may also provide for luxuries, which may include massage therapy, vacations, companions, television, etc. These items may also provide medical, educational and social benefits and will hopefully enrich the life of your child.

While attending to these important decisions, you must also consider the potential for public benefits and assure that they are not lost. This may include supplemental security income, food stamps, housing, fuel assistance and possibly a monthly benefit from other sources. However, in the event that governmental benefits are ever diminished, then the funds in the Trust may be available to or for the benefit of your disabled child.

A properly established and funded Trust will also provide the additional benefit of avoiding probate. In addition, estate taxes may minimized or eliminated, which will allow for preservation of additional funds for your disabled child and other beneficiaries.

Another important document to consider is a care plan, which would allow a guardian and trustee to be aware of the special needs of your child. This will list all of the educational, social, financial, and any other necessary information about your child's needs that must be attended to on a daily basis.

The care plan will list of any basic and special information regarding the plan for the child and provide detailed information that will help the trustee and guardian to determine the best housing and social situation for your child. It will also provide detail your wishes for the future as your child transitions from minority to majority and then beyond. Every year, this care plan should be updated, and a copy kept with the Trust Agreement.

It is important to contact professionals who are knowledgeable in this area, as the rules change quite frequently. It is also important to know what services and programs are available to support individuals with disabilities in your community. The trustee and guardian must be provided with information about how services such as therapy, medications, and transportation will be paid for.

The details of the administration and taxation of a Special Needs Trust are quite involved and require professional assistance. One of the best sources to locate this type of attorney is through the Special Needs Alliance, which is made up of approximately one hundred lawyers from across the United States, who must be invited to join the organization. These attorneys are recognized by their peers for their competence, caring and their expertise in preparing plans for disabled families. They may be located at www.specialneedsalliance.com.


By: Hyman G. Darling, Esq.