Siblings Serve Vital Role

It’s difficult to always put someone else’s concerns before your own, but that’s exactly what legal guardians are asked to do.

For the people Bethesda supports, it is frequently a sibling who is responsible for serving their legal interests. More than 300 siblings are guardians for the individuals we support in more than 100 communities.

Most often it is a parent’s death that causes a sibling to take on the role of guardian. A sibling might also become guardian if a parent moves to a different state, or if a parent becomes incapable of providing care because of their own health issues.

The traditional relationship between siblings takes on a different level for guardians. Sibling guardians for people with disabilities attend medical meetings, arrange living arrangements, manage financial matters, and visit frequently. They often have to balance their guardianship with other family responsibilities and may live far away from where their sibling is receiving support.

Verona Shulfer grew up in a family of 11 children, including several with disabilities.

Describing her childhood as chaotic, Verona, 59, says she had difficulty coping with her life back then.

“I didn’t know who I was because of having so many siblings with disabilities,” she says. “Because of people’s attitudes back then, I had a lot of shame. I had a lot of guilt. I had a lot of embarrassment. It was extremely challenging growing up, extremely. Trying to meet people – everyone always asks about your family. And I avoided that subject – always.”

But Verona had a special bond with Steve, now 55, who she says was “incredibly sweet and precious as a little boy.”

In the crowded house, Verona would take Steve off to the side and teach him how to count, work with him on his speaking skills, and show him the attention that could be hard to come by, she says.

By Steve’s early twenties, both their mother and father had died. He was placed in the state of Wisconsin’s care and lived in government-run facilities; as she began her adult life, Verona lost touch with her brother for many years.

Despite a lack of information about Steve from his agency-appointed guardian, Verona says, she eventually found him and was reunited. She began to visit him regularly and brought him to her home to celebrate Christmas. She became his legal guardian on April 4, 2016; Steve is supported by Bethesda in one of our group homes in Fox Lake, Wis.

“He was in some really bad places,” Verona says. “But I’ve never been happier about where he is today.”

What makes the difference at Bethesda, she says, is the excellent level of attention and support Steve receives from staff, who also communicate regularly with her about what is happening in her brother’s daily life.

“Whenever I visit with Steve now, he always is properly dressed and staff sees to it that he is showered and looks his very best,” Verona says. “His bedroom is unbelievable. Steve loves the Green Bay Packers. Staff went the extra mile and painted and decorated his room with the Green Bay Packer theme.

“One of his all-time favorite things to do is shopping. It makes Steve happy and he will talk about it for days. I am extremely happy to know that my brother is being very well cared for.

Verona says she feels like she is making a true difference in Steve’s life by being there for him, talking to him on the phone regularly, caring about his health – and being a good sister.

“That’s the lesson I learned: family is so incredibly important to people with disabilities,” she says.

She is grateful there is a different attitude these days about disabilities, and it’s not hidden away like it was in her youth.

“It’s really come to the forefront, and that’s what helps me – even as an older adult,” she says. “I don’t have to be ashamed or embarrassed or carry these guilty feelings about having siblings with disabilities. I’m very proud of my family for what they’ve accomplished. Even if it’s the tiniest accomplishment, I’m proud of them.”

Support for Siblings

Founded in 1990, the Seattle-based Sibling Support Project offers substantial resources to brothers and sisters of people with special health, developmental and mental health concerns. In the early 1980s, the group’s director, Don Meyer created Sibshops — spirited workshops created for young brothers and sisters of children with special needs — which today are held in more than 475 spots in eight countries.

The Sibling Leadership Network has chapters in Wisconsin, Michigan, Illinois, New Jersey, Colorado, California, Washington and 11 other states. The organization provides advocacy and policy information as well as leadership training.

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