Stephen J. Buhler, Attorney at Law

Too many parents don't make care plans for disabled children

If you do not have an estate plan set up, what are you waiting for? If you are the parent of a disabled child and you don't have an estate plan that includes provisions for caring for your loved one, the question goes double. Utah families with special needs individuals need to take this situation seriously. Unfortunately, a recent study suggests there's a big need for families to better prepare for the long term.

In general, a big issue is the statistical reality that people are living longer. That includes individuals with disabilities. In many instances, they are outliving their parents. The obvious concern this raises is that without a proper plan in place, a parent's death or incapacitation could leave a dependent child – even one who is an adult – adrift and at risk.

The need is there

That this issue is pressing is clear from the results of the special education study by a researcher at the University of Illinois. According to lead author, Meghan Burke, a survey of parents with offspring with intellectual or developmental disabilities shows that fewer than half have plans in place in the event the child's main caregiver is no longer able to do the job.

The national poll, conducted online, asked more than 380 parents of disabled individuals if they had done any of 11 steps considered part of a basic plan. These included such things as:

  • Identifying and naming a family caregiving successor
  • Researching alternative residential programs
  • Establishing a special needs trust

More than 12 percent responded they have taken no action at all. And while over 50 percent said they had at least talked about the issue or sought out an attorney, no conclusive action had been taken.

Burke observes that the implication of lack of planning for an adult with intellectual or developmental disabilities is that they are more likely to see their lives uprooted and routines disrupted. They are also more likely to be placed in institutional settings.

One bit of telling data from the poll is that more than 39 percent of respondents said the biggest challenge they have in planning is getting information on how to go about it.

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