Planning for future needs important for disabled people

Sep. 25—With more people with profound intellectual and multiple disabilities outliving their parents, research indicates not enough families are developing plans for the future.

The amount of thought put into such planning varies, and many parents often do not start the process soon enough, according to the study, which was published in the November edition of the medical journal Research in Developmental Disabilities.

But for many families, teaching children to live as independently as possible is a difficult decision, regardless of whether they have disabilities, Easterseals Midwest Community Living Director Clay Berry said.

"Parenting is tough, period," he said. "Parenting an individual with a disability has additional challenges and many parents have uncertainty about what the future of their young person will look like. And then to think about how they can be independent afterward is scary for many parents, so that's where organizations like us come in and we support those parents."

Like with other aspects of parenting, it helps to start preparing when the person who will need continuing assistance is at a young age, Berry said.

The resources available are expanding, but the growing number of intellectually disabled people outliving their parents means it still can be difficult to get the care needed, he said.

While there may be a variety of options available, it can come down to choosing the right one, said Rob Honan, CEO of Midland Empire Resources for Independent Living.

"They live with the parents but in the future, where would they be living?" he said. "One option would be to live with other family members. Another option, would they be institutionalized? For some people, that's going to be a really, really big change and a big challenge."

The challenging nature of transitioning to a more independent lifestyle increases the importance of having a plan. But planning is difficult when a parent's death comes as a surprise, Berry said.

"When it's unexpected, a situation can come in a place where a family member can step up and take over that guardianship," he said. "There's some hoops to jump through, but we assist individuals and families in navigating that. Certainly, they can plan ahead."

Alex Simone can be reached at alex.simone@newspressnow.com. Follow him on Twitter at @NPNOWSimone.

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