EXCHANGE: Program created for families of disabled residents

DECATUR, Ill. (AP) - Debbie Rohde wants what any parent does for their children: a secure future.

It’s especially important for Rohde, who is a 58-year-old mother of a 14-year-old child with Down syndrome.

Rohde, of Decatur, stayed home with her daughter Ella for seven years and got by on government assistance. Then, when Rohde returned to the workforce, she lost the aid and lived paycheck to paycheck. Recently, though, Rohde’s perseverance paid off with a well-paying job.

But Rohde faced a problem plaguing many Illinois families with disabled family members: If her assets exceeded $2,000, her daughter Ella would lose out on federal assistance.

Rohde said there was another option, a special-needs trust, but it required a lawyer, and she couldn’t find one locally who would do it. But last month, Illinois state Treasurer Michael Frerichs announced the establishment of the ABLE (Achieving a Better Life Experience) Program, a 14-state consortium that allows individuals to invest money on behalf of loved ones with a disability, similar to a 529 college savings plan.

Those eligible can sign up for ABLE at www.illinoisable.com. Investment growth is tax-free at the federal level and the money can be used for a variety of qualified expenses. It doesn’t require a lawyer and the fee is, on average, about 34 cents per $100 invested.

“(ABLE) is designed to help children reach their full potential without plunging a family into poverty,” Frerichs said.

Ella is high-functioning and benefited from early intervention and Rohde’s experience in working with the developmentally disabled. But Rohde knows there will come a day when she’s not there to care for Ella.

“I have to think about the future when I’m not here,” Rohde said. “(Ella) has two brothers, and I don’t want them to have to pay everything to support her when I’m gone.”

Rohde wanted to start putting away some money, but risked losing Ella’s Social Security Income (SSI). Caring for a developmentally disabled child is expensive. Not just anyone can babysit a child with Down syndrome - Rohde employs certified special-education teachers - and Rohde also uses a special monitor and numerous other programs to make sure Ella is safe and learning the skills she will need to become a successful adult.

“When I managed and lived in an apartment with 16 developmentally disabled people, they couldn’t have a quality of life that was above poverty,” Rohde said. “I’m not trying to say Ella needs some extravagant lifestyle, but I want her to have money to have the things she needs in life.”

Frerichs’ press secretary Greg Rivara said the need for this type of savings program has gone unmet for years. In 2014, the federal government finally began a program similar to the 529 college savings program that allowed those caring for a disabled loved one to invest money tax-free for use in qualified purchases.

Gov. Bruce Rauner signed SB 1383 in 2015, officially bringing the program to Illinois. But when Illinois tried to establish the program, Rivara said bankers told the state there wasn’t enough demand.

“They said there weren’t enough people who would want to use this investment tool for it to be affordable,” Rivara said. “We said, ’That can’t be.’

“But then we thought: If Illinois, the fifth-largest state in the country, doesn’t have enough demand, other states wouldn’t, either. So we began reaching out.”

The more states Illinois could get involved, the lower the cost of the program would be. Alaska, Arizona, Iowa, Kansas, Missouri, Minnesota, Montana, Nevada, New Jersey, North Carolina, Pennsylvania and Rhode Island joined, and Indiana recently agreed to become the 14th state in the consortium.

When Frerichs’ office began reaching out to the citizens of Illinois, stories began pouring in. One Illinois family had chosen not to receive food assistance through a state program because the value counted against federal assistance for their child with spina bifida.

Rohde isn’t the typical parent of a developmentally disabled child. She worked in the special needs field for years, and when Ella was born with Down’s, Rohde looked at it as a blessing instead of a curse.

“The field of special needs was a calling for me, so when she was born, I said, ’OK God, this is what you’ve been preparing me for,’” Rohde said.

Rohde knows that Ella will always need someone watching over her - at the very least, a case manager to do intermittent check-ins. But Rohde has pushed Ella to be as active and independent as possible; she participates in Special Olympics, dance, music and art, and has learned how to count money and comparison shop. She’d like to see Ella go on to college and possibly go into a career as a masseuse - “That girl can give a good back rub. I’m not talking about just playing around. She can give a deep tissue massage.

“At some point, and I don’t know what age that will be, she’s going to want to move out on her own,” Rohde said. “My dream would be for her to find two or three friends who are as high-functioning as she is and buy a house for them. The ABLE program can help us have the money to pay for something like that without her losing the benefits she’s always going to need.”

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Source: (Decatur) Herald & Review, https://bit.ly/2l5lXxm

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Information from: Herald & Review, https://www.herald-review.com