By Jan Willms
A young woman with disabilities loves to play cards, but she has no one to play cards with. In steps her independent living skills (ILS) worker, who spends three hours playing card games with her.
Sometimes an act of human contact and fulfilling an emotional need is a big part of the service provided by ILS staff. ILS can keep people with disabilities engaged in their communities and living with minimal supports. The program is increasingly becoming a valued option, in a time of waiting lists for housing and a focus on keeping people in the community.
ILS training has been an active program with Accessible Space Inc., (ASI) for many years. The nonprofit provides accessible, affordable, assisted/supportive and independent living opportunities for persons with physical disabilities and brain injuries, and the elderly. Residents range from those needing minimal if any support services to people needing 24-7 care.
Josh Berg, director of program services for ASI, said ILS training there had plateaued. Now it is expanding, serving people wherever they may be. Jody Parsons, the ILS supervisor for ASI, has been expanding the program.
“We have doubled if not tripled the staffing in the last three months,” Berg said. “We have 40 per cent more individuals participating in the ILS program, and we hope to double that amount by the end of the year. We can provide ILS services to anyone who qualifies, whether they are living in one of our buildings or in their own apartment or home,” he said.
Karen Lund has lived in St. Paul’s Hamline Hi-Rise for three years. She relies on ILS training. Lund suffered a stroke about 15 years ago. “First my boyfriend had a stroke, and I was so worried about him that I had one,” Lund said. “I couldn’t walk or talk, and I had to learn all over again.” Lund lives in assisted living with minimal services. She left her longtime home after her boyfriend’s death. Mary Ballanger, her ILS worker, helps Lund go through her mail and go out shopping. “And we go out to eat,” said Lund. Lund is glad for Mary’s assistance. “I’m glad I kept her,” she said jokingly. “Karen has done really well, and she has come a long way,” Ballanger said. “It’s tough to leave a place you have been living in for a long time, but she’s donevery well.” Lund walks twice daily, goes to classes at Wilder Day Program classes, keeps a pet bird and enjoys her neighbors. “What’s not to like?” she said.
ASI began operations in 1978, with five cooperative homes offering services to 20 residents in Minnesota. Now there are 150 properties across Minnesota and in 30 other states. “We have assisted living services, ILS and corporate adult foster care,” Berg said. “We are not building as many apartments now, but one way we can grow is with our services.” Most ASI housing units have a waiting period, but there is no wait for ILS training.
Berg said, ILS is also reaching out to homeless participants. “We may help someone who lives in a storage unit or on the street.” Berg said there is a lack of affordable housing in general, whether tenants are disabled or not. “The combination of a disability and lack of housing makes things more challenging,” he said.
ASI used to erect five or six buildings a year. “Now we have just one in the works… And with the way funding is going, we don’t know when the next apartment complex will be built,” said Berg. “But we can get ILS services to people wherever they are without a wait.”
ILS workers can help clients find housing, learn about resources, and get out into the community. “ILS can help people with employment, paying bills and getting paperwork in on time. How much help we provide depends on the individual,”Berg said. The program wants to meet a participant’s needs, but also keep him or her as independent as possible.
“If a nurse says someone has a medical appointment in a week, the ILS person can make sure transportation is lined up.”
“We just want to help more people, as many as possible, knowing there are certain boxes we work in,” Berg said.
“We want to catch a situation before it’s a major health need or requires care that is so demanding it gets overwhelming. We want to be more proactive.”
Similar models are starting to emerge, such as Individualized Community Living Support (ICLS) for the elderly. “This is similar to ILS, but for an older population,” Berg said. “We are working with the Department of Human Services and Minnesota Department of Health to roll that out. It is relatively brand new, starting in April, and we will be one of the first providers to test it out. It gives us an opportunity to figure out how it works and get the wrinkles out.”