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Study: Most parents with special needs kids have no estate plan

If you have a child with an intellectual disability, you need a plan to care for that person when you no longer can. Yet in a recent national survey, more than half of parents of special-needs children reported they had no such plan.

The study, which appears in the April issue of the journal Intellectual and Developmental Disabilities, identified 11 long-term planning activities, such as:

  • Identifying a successor to the current caregiver
  • Writing a statement of intent to guide future guardians' or caregivers' decisions about the person's care
  • Discussing future care plans with the child or family members
  • Researching residential programs
  • Locating an attorney
  • Establishing a special needs trust

Over 12 percent of those surveyed said they had not taken any of the steps. More than half said they had engaged in three of the activities, but the study determined that most of their steps had been aspirational rather than conclusive.

Financial constraints and family conflict were sometimes behind the lack of planning, but more than 61 percent of the respondent parents cited a lack of available services to meet their child's needs and abilities. According to one special education professor, 75 percent of Americans with intellectual disabilities lack access to formal services.

Of the approximately 380 families who responded to the survey, 77 percent said their children, who ranged in age from 3 to 68, lived at home or with another relative. Seventeen percent lived independently with support, and another 6 percent lived in group homes.

The special education professor said that lacking an estate plan, especially, affects the whole family. When the caregiving parent dies, she said, "you are more likely to face a crisis situation where the person has to move out of the family home, be uprooted and have their routines disrupted. A sibling, most likely, will have to jump in and pick up the reins caring for the person with disabilities -- while, at the same time, both siblings are having to face their parent's mortality."

A note on special needs trusts

One way special needs trusts can be extremely helpful is by supplementing the income of people with disabilities who will rely on Social Security disability for support. Perhaps the most common source of income for adults with intellectual disabilities is the Social Security disability program called Supplemental Security Income (SSI).

The income limitations for SSI are quite strict, and well-meaning parents can threaten their adult child's eligibility by providing extra income or even gifts. With a special needs trust, an adult child with a disability can receive money for specific purposes without threatening SSI eligibility. Ideally, the trust would be set up before the child turns 18. An attorney can help.

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