Written by Cheryl Anderson | Appleton Post-Crescent
Katie Ketter loves to joke around at least a couple times a week with her big sister, Ashley Baldwin.
“Recently we started swimming together at the Y,” Baldwin, 27, of Appleton, said of Ketter, 24. “Katie will stop over on the weekends and I help her print out her pictures; she just got a new camera.”
At the end of November, Ketter, who is cognitively disabled, also began a new stage of life — she’s moving out of her parent’s Appleton home and into a privately run adult family home in Darboy.
“She loves it,” Baldwin said. “She’s staying pretty active in the community and she’s still really involved in Special Olympics and Arc (Fox Cities) activities. She’s really doing well.”
A big reason the transition was easier for Ketter and her parents was the knowledge Baldwin gained two years ago attending Future is Now, a program for adults concerned about the future of their adult siblings with disabilities that’s offered by the Fox Valley Sibling Support Network. A new two-part session will be held Jan. 28 and Feb. 25 at Touchmark on Prospect in Appleton.
“In talking to siblings I’ve gone to the meetings with, it’s almost our biggest worry in life. What are we going to do about our siblings’ future,” Baldwin said. “And how do we make sure we do the best thing for them?”
Seventy-five percent of adults with developmental disabilities live with their parents, according to FVSSN executive director Harriet Redman. Research shows, only 25 percent of those parents ages 60 and older have made plans concerning the future living arrangements for that adult child when they no longer can provide care. Fewer still are the number of parents who’ve discussed those plans with their other adult children, often leaving siblings of the adults with disabilities in the dark.
“It’s inevitable that something will need to be adjusted in that plan,” said Redman, adding there are many reasons why adults with disabilities may still be living at home. “Sometimes there’s no other options or they’re on a waiting list, which is often the case, or they don’t have funds for services. Or parents are just protective and don’t trust institutions or other people. Or they become companions to the elderly mother or father. So there are lots of reasons; some are better than others.
“But when that’s going on and there are other siblings, those siblings — depending on where they are in life — may have had very little to do with their brother or sister’s care … or they may not even know who their sibling’s doctor is because their parents have said don’t worry about this. They are protecting their other kids as well as their child with the disability.”
But having that conversation with parents can be very difficult, and, Redman said, the No. 1 barrier. No one wants to rock the boat, and very often the parents don’t really have a plan in place. They just assume everything will work out fine.
“My family didn’t want to talk about the ‘what if’s’ in life,” Baldwin said. “So we went through Future is Now as a platform to bring up those difficult discussions with my family — planning for Katie’s life after my parents.”
Although she’s been attending offerings at FVSSN for about eight years, Paula Hoglund, 59, of Appleton and her three sisters had to figure out on their own what the best options were for their brother, John Stevenson, 53, who has Down syndrome, when their aging mother was diagnosed in 2004 with cancer. Stevenson had lived with his mother his entire life, and she’d made no plans for his future.
“Our aging parents, despite the odds, kept their children at home back in the ’50s and ’60s when the standard advice was to institutionalize your challenged child,” Hoglund said. “These were very strong parents to blaze trails and keep their children at home. They developed programs and raised their children and made that big commitment to their child early on, never really dreaming their children would again defy predictions and live to this age. And they really didn’t think they’d have to be dealing with these issues at their age.”
When Hoglund’s mom became so sick she could no longer care for Stevenson, the family was fortunate to get him into a group home in Appleton. “So it was a blessing in disguise for us,” Hoglund said.
When his mother died in 2009, Stevenson didn’t have to deal both with the death and a change in residence.
“Like any one of us planning for retirement, we don’t know what life in the future’s going to be like,” Redman said. “But most of the time if you have some preparation in place … you’re going to have peace of mind. The transition … will be a lot smoother.”
While many siblings of adults with disabilities eventually become their guardians, they don’t want to be the parents. “They want to stay a sister or a brother,” Redman said. “They want to have that kind of relationship, they don’t want to be the bad cop.”
Siblings in this situation, she added, are part of what’s called the club sandwich generation, a spin-off of the term sandwich generation, a generation caught between caring for their children and their aging parents. Members of the club sandwich generation have the added responsibility of providing support for grandchildren, or in this case, adult siblings with a disability.
“Do we take the complexity away? No,” Redman said of Future is Now and other programs offered by FVSSN. “What we do is help them connect with other people who have similar experiences and they can share. And often in that process, they gain confidence, encouragement and empowerment. All of that can be really helpful to tackle planning.”
The support network also connects them with local resources — attorneys, county officials, the Aging & Disability Resource Center and housing officials — so when the time comes they know somebody they can call. It’s still a complex process, but with connections it can give them the courage to proceed.
The knowledge gained at Future is Now benefitted Baldwin and, most importantly, Ketter.
“It was extremely helpful in encouraging my parents, and just kind of teaching them the importance of a special-needs trust to ensure the long-term care for Katie and also to encourage them to write a will, which are all things they did as a result of the Future is Now program,” said Baldwin, who will serve on the panel for the upcoming workshops to share her knowledge.
Special-needs trusts are an important element in planning for loved ones with disabilities. It’s a specialized legal document that ensures that the inheritance a parent wants to leave him or her will be used for his or her benefit.
Future is Now emphasizes peer support and allows siblings of adults with disabilities to get connected to local resources that can help them with planning.
“As a network, that’s our basic mission — to connect,” Redman said.
# http://www.postcrescent.com/article/20120122/APC04/120120138/Caring-sibling-developmental-disabilities-can-lifetime-commitment-
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