Life Planning in Down Syndrome

Life planning in Down Syndrome is a very important part of taking care of your special needs child. Along with the dramatic increase in life expectancy for adults with Down Syndrome over the past half century comes a need to plan ahead for their future care and well being. If provisions are not put into place by the parents, the courts will make all the decisions pertaining to the person with Down Syndrome. Yet, they know nothing about this person. They don't know the person's routine, the fears, the talents, the special needs...you get the picture. That is why it is so important to put into place a Life Plan for a person with special needs.

Life planning in Down Syndrome should be started early in the child's life. No one is guaranteed another day. Do it now, before it is too late.

Life planning typically covers issues such as the day to day personal care and activities of the person with Down Syndrome, financial arrangements, living arrangements, guardianship, and more.

The following is a small portion of a pamphlet obtainable from the National Down Syndrome Society (US).

Excerpt from the "Life Planning and Down Syndrome" pamphlet by the NDSS "QUESTION: What is a special needs trust? ANSWER: A special needs trust is a legal document thatenables family and friends to leave assets to provide forthe person with a disability. When properly drafted, thefunding assets are not considered to belong to theperson, but are placed in the trust to provide for theirsupplemental needs. This will avoid the termination ofgovernment benefits and, for individuals on Medicaid,will prevent the loss of these assets to repay Medicaidfor previously provided health care services.You need not have a large estate to benefit from a specialneeds trust. Assets in excess of $2,000 in the person’sname can result in termination of some benefits or beused to repay Medicaid. QUESTION: What is the best way to leave informationfor the person’s care when I am no longerhere to provide it? ANSWER: A detailed document known as a letter ofintent is recommended. While this letter is not a legaldocument, it includes details about the person’s day-todaycare needs, their abilities, diet, activities, rights,medical care, etc. It is recommended that you make avideo providing instructions and showing care providershow to assist the person with special needs in performingthe typical activities of daily living, such as bathing,dressing, food preparation and communication. QUESTION: Can any attorney, financial advisor,accountant or other professional do this work? ANSWER: No. Few professionals have extensiveexperience in this field. It is important to work withsomeone who specializes in estate and future-needsplanning for people with disabilities." Excerpted from the NDSS :Life Planning and Down Syndrome" pamphlet

In the (near) future we hope to include links to Expert Life Planners on our Life Planning in Down Syndrome page so please check back with us soon.

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