Caring for a Sibling With Special Needs

It isn’t cheap being your brother’s (or sister’s) keeper.

Mother and adult sister with special needs man
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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.)