When a person in Sunflower Diversified Services’ residential program learned she may have to give up her independence, she took a piece of paper and scribbled with a vengeance.
“In the center of this confusion on the paper, she indicated she was stuck in the middle of it,” said Ladeska “Decky” Makings, Sunflower chief operating officer. “This is just one reaction of many since we started trying to prepare people for possible changes in their living environments.”
Sunflower serves people with developmental delays and disabilities in central Kansas. Its residential supports are in jeopardy because the state wants to change its funding formula for helping people with disabilities in their own homes.
While each person in the residential program reacts differently to the news, the message from each one is clear, Makings said.
“They want people to stop messing with their lives,” Makings explained. “Not one of the people we serve who lives alone or with one roommate wants to move into a group home.
“They have been living at high levels of independence for so long with staff support and they want to keep it that way,” she continued. “Like all of us, those we work for in their homes enjoy the options, control and flexibility that come with independent living. They deserve nothing less.”
Because people served by Sunflower are encouraged to advocate for themselves, they have compiled information that has been sent to state and federal officials.
“Sunflower has a long history of supporting our self-advocacy groups,” Makings said. “Every single person wants to help get the word out about what the changes will mean to their daily lives. They are trying to let officials know their feelings.”
In addition to the threat of group living, Sunflower individuals are concerned they won’t have access to staff when needed.
“These concerns are justified,” Makings stressed. “They want and deserve to make their own decisions and have staff available on their schedule. This won’t be possible if the formula for Sunflower’s reimbursements changes.”
The idea of forcing people into group settings is “heartbreaking,” Makings commented. “Many people we serve are highly successful in their own homes, but when they need help they deserve to get it. The state wants to do everything based on its schedule and its needs, without a thought to the reality of what this will do to individual lives.”
Makings readily acknowledged that independent living is more expensive than group homes. But it is worth it, she said.
“I can guarantee you that many people have accomplished so much more in their employment and home lives than if they had been in group homes,” Makings said. “In the past, Sunflower owned nine group homes but now has only two for those who choose that lifestyle or require the specialized physical adaptations available in Sunflower’s group homes.
“But a large majority want to live alone or with one roommate,” she elaborated. “Sunflower has dedicated itself for decades to providing this choice to people. We can’t do it without state support.”
Jim Johnson, Sunflower executive director, has said the result of state proposals would be “dreadful.”
“At a recent meeting in Salina with federal officials,” Johnson recalled, “one audience member said: ‘we faced budget cuts and we always made it work. We got cut again and we made it work.’
“But,” Johnson said, “there is nothing left. We are cutting into bone.”
The Centers for Medicare and Medicaid (CMS) listened to the audience at the meeting, Johnson said. “They gave people chances to talk and ask questions. One CMS representative explained there are many factors to consider, but ‘as a Kansan, I am dismayed at what I heard today.’”
Johnson explained the man was referring to the real-life stories of what will happen to people with disabilities if changes are made.
CMS is a federal agency and the state must have its approval to institute the proposed budgetary changes.