Future planning is one very important and often complicated issue that parents confront when they have a son or daughter with any type of disability: How to plan their estate to best provide for their child's future security. Parents may ask themselves:

  • " What will our son or daughter do when we are no longer here to provide help when it's needed? "
  • " Where — and how — will our child live? "
  • " Will he or she have enough money to sustain a decent quality of life? "

These are complex questions and difficult ones to answer. When a child has a disability you are going to have concerns about their future.

As parents, you may have a tentative plan in the back of your minds that one day, in the near or distant future, you will write a will that leaves your son or daughter with a disability sufficient resources to make his or her life secure. Many of you may have already written such a will. Yet there are many things to know and consider when planning your estate. For example, bequeathing a person with a disability any assets worth more than $2,000 may cause the person to become ineligible for government benefits such as SSI and Medicaid. For many individuals with disabilities, the loss of these benefits would be a devastating blow. In addition to the cash benefits and medical coverage that would be lost, the person would also lose any number of other government benefits that may be available to eligible persons with disabilities, such as supported employment and vocational rehabilitation services, group housing, job coaches, personal attendant care, and transportation assistance.

A 1996 survey conducted by the ICR Survey Research Group showed that at least one individual in 20 percent of U.S. households is a caregiver – either part-time or full-time. Planning for the future of people with disabilities is something they and their families/caregivers must tackle – and the sooner the better.

Whether the person with special needs is 4 or 40 years old, it is imperative that families create a plan. Despite the growing number of persons with developmental disabilities in this country, less than 20 percent of families have done any planning.

The 10-Step Process
In order to prepare a plan in a simple step-by-step procedure without feeling overwhelmed by the process, Barton Stevens recommends that families commit to know the 10 life planning steps. If these steps are followed, the family will create a directive that addresses the lifestyle and care needs of their child.

There are 10 steps you follow to help you create a directive that addresses the lifestyles and care needs of people with disabilities. The information recorded depends on the type and severity of the disability.

  1. Prepare a life plan. Decide what you want regarding residential needs, employment, education, social activities, medical and dental care, religion, and final arrangements.
  2. Write informational and instructional directives. Put your hopes and desires in a written document. Include information regarding care providers and assistants, attending physicians, dentists, medicine, functioning abilities, types of activities enjoyed, daily living skills, and rights and values. Make a videotape during daily activities such as bathing, dressing, eating, and recreation. A commentary accompanying the video is also useful.
  3. Decide on a type of supervision. Guardianship and conservatorship are legal appointments requiring court-ordered mandates. Individuals or institutions manage the estate of people judged incapable (not necessarily incompetent) of caring for their own affairs. Guardians and conservators are also responsible for the care and decisions made on behalf of people who are unable to care for themselves. In some states, guardians assist people and conservators manage the estate of individuals. Many parents who have kids with disabilities do not realize that when their children reach 18, adults may no longer have legal authority. Choose conservators/guardians for today and tomorrow. Select capable individuals in the even you become unable to make decisions in the future.
  4. Determine the cost. Make a list of current and anticipated monthly expenses. When you have established this amount, decide on a reasonable return on your investments, and calculate how much will be needed to provide enough funds to support his or her lifestyle. Don't forget to include disability income, Social Security, etc.
  5. Find resources. Possible resources to fund your plan include government benefits, family assistance, inheritances, savings, life insurance, and investments.
  6. Prepare legal documents. Choose a qualified attorney to assist in preparing wills, trusts, power of attorney, guardianship, living will, etc.
  7. Consider a "Special Needs Trust". A Special Needs Trust holds assets for the benefit of people with disabilities and uses the income to provide for their supplemental needs. If drafted properly, assets are not considered income, so people do not jeopardize their Supplemental Security Income or Medicaid. And, too, they don't have to repay Medicaid for services received. Appoint a trustee and successor trustees (individuals or corporate entities, such as banks).
  8. Use a life-plan binder. Place all documents in a single binder and notify caregivers/family where they can find it.
  9. Hold a meeting. Give copies of relevant documents and instructions to family/caregivers. Review everyone's responsibilities.
  10. Review your plan. At least once a year, review and update the plan. Modify legal documents as necessary.

Once you have decided to prepare a plan, find someone to help you or hire a professional planner. Referral sources are available through governmental agencies, organizations, or local support groups. "'Who will care when you are no longer there?" is an overwhelming concern people with disabilities and their families must address. Solutions are available. The next step is up to you.

Note: The previous section was provided by Barton Y. Stevens, ChLAP, founder and Executive Director of Life Planning Services in Phoenix, AZ, who has been providing estate and financial planning services since 1972.

Reference: Autism Society of America www.autism-society.org
NICHCY – News Digest www.kidsource.com/kidsource/content4/estate.dis.all.3.html