Protecting children with special needs

Published On: Jan 20 2013 10:27:35 PM EST   Updated On: Jan 21 2013 06:20:00 AM EST

The cost of caring for a person with autism for their entire life is more than $2 million. But what happens when parents pass, and there's no one to pay?

It's something moms and dads of autistic and other special needs kids worry about constantly.

24-year-old Austin Lewis likes old videos of New York City.

"I like watching the pedestrians go by," said Austin.

He also likes his job at Walgreen's.

"I stock, get rid of the expireds," Austin added.

Diagnosed with autism at age 3, his parents -- Kay and Randy -- hope he continues to live a happy and long life. But for years, they've worried about what will happen to him when their lives end.

"You realize you only have so much time on this earth," said Randy.

"Every parent wants to live one day longer than their child with special needs," Kay said.

"Parents can't imagine their child with a special need, without them," explained Mary Anne Ehlert of Protected Tomorrows.

Ehlert helps families like the Lewis's prepare for the inevitable.

"What do they want for their child, and what are they spending today," said Ehlert.

She says costs for care, housing and food can vary based on disability level, but the yearly average can be around $65,000.

She recommends parents look at financial planning for a special needs child as a retirement plan for three. Invest in a life insurance policy, but do it early. If you get sick, you might become uninsurable. Make a will but do not leave money to your disabled child. In most states, if they have over $2,000 to their name, they're disqualified from federal and state programs.

"The child can't get access to Medicaid. They can't get access to social security. Leave that money for the child in a special needs trust," Ehlert said.

If possible, set up a co-trustee between a family member and a trust company.

"A family member has the heart. The trust company has the expertise," said Ehlert.

Simply put: set a goal, design a plan, and put it in action. That's what Kay and Randy are doing with a little help, and they're doing it all for Austin.

“I think it'll be fine. I think it'll be fine," Randy said.

If friends and family want to give your special needs children savings bonds as gifts, make sure they're in the parents' names. Otherwise, the generous gesture could put the person over the $2,000 limit and make them ineligible for government disability benefits.


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