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Caring for a Sibling with Special Needs

Geoff Williams

They've been called the "club sandwich generation" - those who raise their children while taking care of aging parents while watching over a third generation. And sometimes that generation is your own generation - that of a brother or sister who has significant special needs.

A recent Easter Seals Sibling Disability Study survey reported that while 80 percent of respondents expected to eventually be their sibling's primary caregiver, only 33 percent felt financially prepared to someday step into that role. It also noted that more than 65 million people - 29 percent of the population in the United States - provide care for a chronically ill, disabled or elderly family member or friend in any given year, logging an average of 20 hours a week. Much of that care, the survey noted, is for an adult brother or sister.

Federal programs such as Supplemental Security Income and Medicaid are often a financial safety net for people with special needs. Nevertheless, a brother or sister may still find themselves overwhelmed, either because the costs the sibling incurs are high, or simply because it can be hard enough to make your own financial decisions, let alone another family member's. And if you have a spouse and children of your own, you may not be able to care for your brother and sister the way your parents once did.

"There can be a lot of guilt for brothers and sisters of adults with special needs," says Mary Jo Coiro, division director of behavior health and assessment services at the Loyola Clinical Centers, a wellness clinic in Baltimore. "If he or she lived with the parents, they'll sometimes wonder, 'Am I a bad person for putting my sibling in a group home?'"

[Read: How to Financially Prepare for Raising a Child With Special Needs.]

Joanne Gruszkos, founder and director of MassMutual's SpecialCare program, which is aimed at helping families with special needs, says it's a big problem when siblings are unprepared to care for their brother or sister. "Medical science has allowed people with disabilities to have a longer life span. Someone with Down syndrome, for instance, used to not live past 20 or 25 years of age. But now you have people with developmental disabilities living to be in their 70s and 80s, and their parents are passing on."

So if you have a sibling with a developmental disability, who will for the rest of their life need someone, like you, watching out closely for him or her, here are some issues to start considering, if you haven't already.

Start talking to your parents now. Even if you believe your parents are on top of things, and even if they're still working and the idea of them getting older still seems like a misplaced rumor, it isn't a bad idea to discuss the future every now and then.

Jeff Alt, a 45-year-old speech language pathologist in Mason, Ohio, frequently visits his brother Aaron, 40, who lives 180 miles away in Maumee, Ohio, at a group home called Sunshine. Aaron, 40, was born with cerebral palsy, needs round-the-clock care for even the most basic tasks and can't communicate verbally.

"We can only guess what he can understand," Alt says, "but he's still spunky and smiley."

Alt hiked 2,160 miles of the Appalachian Trail as part of a fundraising effort for Sunshine and wrote a book about the experience, "A Walk for Sunshine." But even Alt, who has four brothers and sisters including Aaron, isn't sure who will someday take over their father's role as legal guardian.

"It's easy to just not think about," admits Alt, who is married and has two young kids.

Look into a legal guardianship. You - or another sibling - will have to take over this role eventually, assuming one of you wants to be intimately involved in your brother or sister's caregiving.

"If you're in the position where something has to be done now, that's one of the first things you should do," Gruszkos says.

It takes awhile. Although the exact process varies from state to state, there are a lot of legal hoops to jump through before one can be named a legal guardian by the court, as your parents know or will find out. (When a child with severe special needs turns 18, most parents become legal guardians; without that designation, they lose most of their power to advocate for their adult son or daughter in numerous decisions that may come up in their child's life.)

To become a legal guardian, you'll need to hire an attorney, and you may want to find one who specializes in special needs; the nonprofit Special Needs Alliance has a locate-an-attorney page (http://www.specialneedsalliance.org/locate-an-attorney).

Consider setting up a special needs trust. Ideally, your parents have already started one. A special needs trust allows someone with a disability to receive money while still remaining eligible for Supplemental Security Income and Medicaid.

[Read: 5 Steps to a Family Caregiving Agreement.]

There are a lot of rules associated with a special needs trust that a layman isn't likely to know. For instance, someone has to manage the trust; even if a sibling with special needs is financially competent, he or she is allowed to take money from the trust. If they do, SSI and Medicaid will count that money as income. The money from a trust also can't be used as rent, since SSI income pays for housing.

A trust fund can also protect the sibling with special needs and ideally will be set up long before a brother or sister takes on the duties of legal guardianship. One of the most frightening stories Gruszkos says she heard about was of a parent who had two sons, one whom had severe disabilities and one who didn't. The parent left money to the brother who didn't have disabilities, reasoning that he would take care of the other son. But the brother got a divorce, and his ex-wife wound up with the inheritance intended for both siblings.

"This is the reality," Gruszkos says. "You can't just give all of your money to one sibling and assume he'll take care of the other."

Ease into caregiving. If you can, take over those caregiver duties from your parents selectively and gradually. It is a good idea for the sibling with a disability as well.

Rachel Chubinsky, 28, a sales assistant in New York City's fashion industry, says her brother, Daniel, 24, is "severely developmentally delayed." Daniel, who has an IQ level possibly as low as 35, lives with their parents, but in about five to 10 years, the plan is to move him into a residential home for the severely disabled. That way, Daniel's parents will be young enough to visit and get Daniel adjusted before someday, they no longer come by.

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"They say it is far harder when a parent dies, and then the child is just immediately thrown into a situation that is new and scary for them," Chubinsky says.

Chubinksy isn't unnerved by the idea of caring for Daniel. "As a child, I always dreamed we would live together forever," she says.

But the idea of paying for her brother's care without any financial assistance is scary. Chubinsky says her parents have money saved, and everyone is hopeful they'll have saved enough. But forever is a long time, and Chubinsky has a wary eye on the future.

"I only hope that society continues to support these individuals in these residences," Chubinsky says. "Because in reality, no one can really afford what they need."

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