CHICAGO — Millions of Americans have siblings with disabilities. But when parents die, these siblings often become the primary caregivers. It’s something many are unprepared for. One group is connecting experienced volunteers and mentors with people who are beginning to shoulder the responsibility of caring for a sibling with special needs. It’s something that can take both a psychological and financial toll.
When Nora Fox Handler’s mother died, she and her four sisters were suddenly left to figure out how to care for their three brothers.
“All of my brothers, all the males are on the autism spectrum. And Marty was number two out of eight and he was never diagnosed,” said Handler who has since become a sibling caregiving advocate and mentor.
Navigating the unfamiliar system meant making decisions about who would take her brothers in, addressing medical issues and group homes. It also meant making a lot of mistakes.
“There are things that you can't undo easily. You know, I mean, you can't undo quitting your job,” said Handler. “You can't undo moving them all in and changing your whole life.”
That experience pushed Nora to become a founding member of the Sibling Leadership Network – a national nonprofit that assists people who have a brother or sister with a disability.
“I'm really a full-time volunteer working with people with disabilities,” said Handler.
“Our mission is to provide information, support and tools for siblings of people with disabilities so that they can advocate with their brothers and sisters with disabilities for issues that are important to them and their entire families,” said Katie Arnold, executive director of the Sibling Leadership Network.
She says that through their programs experienced volunteers like Nora Fox Handler help people who are learning how to provide care to their siblings with special needs.
“We're trying to help siblings make sure that they have everything in place. It's never going to be easy. But to have to try to learn - like doing a death, you know? And it's pretty hard on my brothers, too,” said Handler.
It’s a situation more and more people are finding themselves in.
Between 2015 and 2020, the number of caregivers of family or others aged 50 and over in the U.S. increased by 7.6 million – reaching a staggering 41.8 million. That means 17% of Americans are now caregivers for someone who’s aging.
“Siblings are often what we call the ultimate sandwich generation, where they're often juggling the caregiving of their aging parents, their own children, and then they have the extra layer of their brother or sister with a disability,” said Arnold.
Through its volunteer program, the Sibling Leadership Network has developed a sibling-to-sibling mentoring program to provide peer-to-peer support.
A monthly podcast and virtual symposium are made available online, free of cost.
“We have a volunteer that's an expert on a topic to kick off the symposium, and then the siblings are able to really engage in that topic, talk, share, ask questions,” said Arnold.
For volunteers like Nora, addressing the needs of siblings as they transition to caregivers is something she wished she had had access to.
“I call us sister mothers because our roles change, we’re not the same kind of siblings that typical siblings are,” said Handler.
She says it’s about educating caregiving siblings before they find themselves in crisis.
“We do the absolute best that we can to make sure that nobody walks through this alone and uninformed,” she said.
That’s something she and her siblings learned the hard way.
