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Cover Story: The Forgotten Family Member

Thu, Jul 28, 2011

We really are a forgotten family member; they forget how much impact we can have,” said Tara Conley, president of Supporting Illinois Brothers and Sisters (SIBS), about siblings of people with disabilities. “Providers just don’t think about it, but parents think about it; but they’re thinking they don’t want to burden us or pressure us, they want us to have our own lives. Others put all the pressure on siblings—there needs to be a middle ground to foster a relationship where siblings want to stay involved and have a loving relationship with their sibling.”

With Chicago’s 8th annual Disability Pride Parade on July 23, it is important to honor those with disabilities, as well as those who support them. While siblings of people with disabilities have some of the same worries and questions as their parents, they are often not included in discussions and decisions regarding their sibling. Many young siblings feel resentful of this exclusion, and left with questions about what is going on with their brother or sister. For adult siblings, the lack of family planning from the beginning leads to a lack of future planning, or in other words, planning for the care of the sibling with disabilities after parents die.

Conley feels this need for family planning, so that parents’ intentions for the future are clear. “I was not included at all [growing up]. I was left with a lot of questions—a lot of unanswered questions—and I still am,” she said.

Nora Handler, SIBS Treasurer, has experienced the difficulty that results from a lack of family planning. “I go around and tell my family story because it’s sort of like the worst case scenario of not including the next generation, and then having a huge problem,” she explained.

Handler and her sister, Margaret, have been the main caretakers for their three brothers with disabilities since their mother died 12 years ago. For the first six months after she died, Handler and her sisters tried to keep their brothers in their childhood home. “We were trying to take care of the house, run the boarding business that was still there supporting the place, put the house on the market, take care of the brothers, and take care of our own families. It was horrible; we didn’t even feel like we could grieve. We just had to hit the floor running,” Handler recalled.

Family planning was non-existent for Handler, and while she and her siblings tried to talk about trusts and housing waiting lists, her mother assured them she had taken action. While she did set up a trust for Handler’s two younger brothers, Patrick and Michael, it turned out it wasn’t the right kind of trust.

“If you have some money that you want to keep and still be Medicaid-eligible, there’s something called a special needs trust,” Handler said. “It only gives them extra things, so it doesn’t make them have those assets in a way that affects Medicaid. People shouldn’t leave money until they change it or make it different and they don’t know that. So it sounds like you’re providing for them, but you’re closing the door.”

The lack of family planning, along with the fact that the actions her mother took were irrevocable, culminated in what Handler called “the perfect storm.” She continued, “What we really realized now, as they’re getting older, is that there’s no place that’s necessarily going to be a long-term solution. We’re just going to have to go year by year and see.”

Handler observed that family and future planning is even more pertinent now, as she termed housing and service agencies in much worse shape than they were 12 years ago. “There weren’t as many people on waiting lists. If the same thing happened right now, I can’t even imagine. There are, that we know of, over 21,000 people on the waiting list or waiting for housing. That’s in Illinois. And that’s who we know of, because there are lots of people that are living with 80-year-old parents that don’t even have them on the waiting list,” Handler said.

Decreasing resources is the reason why, even if parents won’t let siblings be involved, Handler insists that they still do as much preparation as they can. “Once we realized [our mother] wasn’t going to let us in, we just kind of buried our heads and figured, ‘Well, we’ll have to take care of it when we have to.’ But what we could’ve done was learn the service system. And we could’ve found other people, because we didn’t find any other siblings until after we were in the thick of it.” She added later, “You can take the trainings [on future planning] even if your parents aren’t going to let you be involved, because there will be a time where they don’t have any say.”

Katie Arnold, SIBS vice president, took this initiative a step further and confronted her family about the issue. “It’s really because of Nora and Tara and all these stories where it’s so difficult; it was a wakeup call. I went to my family and said, ‘We really need to start a conversation about this,’” she insisted.

Arnold’s family has been meeting for six years now, but she recalled that their first meeting was definitely surprising. “Everyone had different assumptions about what the future would hold. My parents were expecting me and my older brother would become guardians. They had forgotten to tell us,” she laughed, adding that, “Information like that often doesn’t flow down.”

Additionally, Arnold made the point that including the person with disabilities in family planning is just as important as including their siblings. Non-disabled siblings play an important role in this inclusion as well. “The sibling perspective is often a little different from the parents’; it’s more of a peer relationship. I think that for many people it allows them to have a mutual relationship with their sibling, instead of the parental perspective which can be overprotective and hesitant to give more independence,” Arnold said.

Because Arnold has a mutual relationship with her sister, who has an intellectual disability, she feels that she is able to advocate for her. “Patrice and I have a strong sister relationship. I see my role as an advocate—trying hard to listen to her, to her wants and needs—and trying to advocate for that within my family, the larger community, and national networks,” she explained.

Due to Arnold’s advocacy and Patrice’s participation in family planning, Patrice will be moving into her own apartment this summer. “It wasn’t previously on the radar screen; my family couldn’t see her being that independent,” said Arnold. Fortunately, Patrice will be able to stay in the community she grew up in, with family support close by.

From their own experiences, these women realized the need for a support system for siblings; somewhere to gain the information and tools necessary to advocate for their rights, and their sibling’s rights, within their family and society. While parents of a person with disabilities are usually connected immediately with other parents in their situation, siblings of those with disabilities may wait 30 or 40 years before they meet other siblings like them. This is a reality their organization has changed.

“I have wanted to do this for as long as I can remember,” said Conley, SIBS founder. The non-profit organization provides information and support to siblings throughout their lifetime and it advocates for inclusion of siblings in service agency programs and national policy.

Conley didn’t meet others in her situation until she started doing respite care for families when she was 16, but the experience was eye-opening. “I just thought, ‘Wow, we have a lot of things in common, it would be really cool if there was something just for us,’” she recalled.

From there she began doing research in college, which led her to Don Meyer, Director of the Sibling Support Project (SSP)—an online sibling support group—and creator of Sibshops. Meyer is also founder of the SEFAM (Supporting Extended Family Members) program at the University of Washington. Conley credits the SSP as “the basis of how [SIBS] came to be— they really started this whole phenomenon.”

Sibshops provide a support network that combines unique games and discussions involving topics that concern mainly younger siblings. The curriculum is taught in over 200 Sibshops in 10 countries, and is a main source of support that SIBS tries to connect their members with. Last year, SIBS co-sponsored a Sibshop Workshop with Meyer, which consisted of teaching 100 individuals the Sibshop model. Five agencies who participated in the workshop have since created their own Sibshop programs, Conley said. Trained in the Sibshop curriculum herself, Conley is facilitating three SIBS Sibshops for youths this summer in partnership with Friendship United Methodist Church in Bolingbrook.

In addition to connecting members with Sibshops in the area, SIBS works to hold adult meetings every six weeks so that adult siblings can get together to have coffee, lunch, listen to a speaker, or simply just talk. Access to support and information throughout a sibling’s lifetime is an area Conley seeks to address directly with SIBS.

As Conley, Arnold and Handler created SIBS along with John Kramer (co-founder of the Massachusetts Sibling Support Network), they noticed similar organizations in many states and thought a national organization would be beneficial to bring the state chapters together. They all played a role in founding the Sibling Leadership Network(SLN) , which Kramer currently chairs. There are also state chapters in New York, Ohio, Oklahoma, Tennessee, and Wisconsin.

It is important to note that many involved with SIBS also work in the disability field, and contribute to these different non-profits in their spare time. Her sister is the reason she is involved in the field today, says Arnold, who is Director of Community Education at the Institute on Disability and Human Development (IDHD) at the University of Illinois Chicago. Every state has a University Center of Excellence in Developmental Disabilities (UCEDD), and the IDHD is the only one in Illinois.

As Director of Community Education, Arnold is in charge of gathering all the current research and information to provide the tools to be able to advocate and get involved. From her personal experience, she sees that there is a lack of longitudinal research on both the perspective of the non-disabled sibling, as well as the impact the sibling with disabilities feels their sibling relationship has had on them. Currently, the SLN has a research committee that is working to gather all the current research themselves, as well as identify gaps in that research. Still, there has been a major lack of funding for research on siblings.

Her passion for advocacy has led Arnold to become highly involved with other organizations in the community, and she was awarded the Young Nonprofit Professional of the Year award in February. She is also involved with Disability Pride events in Chicago, and she and her husband Gary, who is the public relations coordinator for Access Living, host Disability Open Mic Night from 6:30-8:30 p.m. the night before the Pride Parade at the First United Methodist Church at the Chicago Temple. “People in the disability community can share thoughts, poetry, dance and music about their experience,” Arnold said about the occasion. This year, Mic Night coincides with a first-time SIBS event.

In partnership with the Wisconsin chapter of the SLN—Fox Valley Sibling Support Network—SIBS is having a weekend-long gathering for siblings from both states to network with each other and watch the parade together. In addition Linda Sandman, Clinical Director of the Developmental Disabilities Family Clinics at the IDHD, will give a seminar about family dynamics from 9-11 a.m. (also at the Chicago Temple) on Saturday morning. Sandman will be focusing on dispelling stereotypes about the dynamics of families with disabled children, such as these families have more problems because of high levels of stress, or that non-disabled children have to fend for themselves because parents are consumed with their disabled child.

Sandman will be drawing specifically from a family model called “Resiliency Model of Family Stress, Adjustment, and Adaptation” by McCubbin and McCubbin, which introduces a new way of thinking, showing that siblings of those with disabilities possess more control and cooperation, and that these families often pull together and actually perform better. The audience will be engaged with true and false questions by Sandman, designed to challenge current stereotypes. To learn more about the SIBS event, go to www.siblingleadership.org/2011/05/sibs-in-the-city/.

Written by Katie Hills
StreetWise Editorial Intern

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