A Great Bend woman’s situation is one example of what could happen if people with developmental disabilities are included in KanCare instead of the state-run Medicaid system, Ladeska “Decky” Makings cautioned.
As chief operating officer at Sunflower Diversified Services, Makings noted this woman is just one of many local and area residents that could be harmed by inclusion in KanCare. The issue is being debated in the Kansas Legislature.
The local woman, who will be called Mary, is originally from Kansas but was institutionalized in Texas because of severe disabilities. She has Prader-Willi syndrome.
“She was self-injurious and aggressive,” Makings said. “She had to be physically restrained by multiple staff members multiple times a day. She bit her arm until you could see the bone.”
Mary moved back to Kansas almost 12 years ago and started to receive support from Sunflower. With her disabilities, it is impossible to live with roommates, Makings said, adding Mary requires full-time staff assistance.
“We applied our principles of supporting the individual in meeting her own goals,” Makings recalled. “We ensured that she was in control of making her own choices such as where to live and work.
“I don’t like to use the word ‘miraculous,’” Makings continued. “But the changes in her behavior were immediate and amazing. Her aggressiveness and self-injury have almost disappeared. She is working and earning several hundred dollars a month and living successfully in her own home.”
If Mary has to go into the KanCare system for support, Makings said, there is a good chance some of Sunflower’s services will be denied.
“But if any of her supports are removed, she would rapidly revert to her previous condition,” Makings said.
If things continue to progress in the direction Gov. Sam Brownback intends, moving to the KanCare system for Medicaid payment could mean that a private, for-profit insurance company could decide what services Mary will receive. These companies are called managed care organizations (MCOs).
“The problem is that MCOs don’t understand situations such as Mary’s because they have no experience with them,” Makings said. “An MCO would assess her and determine she is doing quite well. So, her funding and support would be decreased.
“What they don’t understand is that her life would revert back to the old kinds of behaviors,” Makings explained. “She needs this support. And believe me, our community-based support is much less expensive than if she has to be institutionalized again. Taxpayers should know what is at stake here.”
Makings is equally concerned about what will happen if case management is also included in KanCare; MCOs could begin providing that support with medical-model case management. It is currently the only service that doesn’t require years on a waiting list to access.
Case managers help people identify available services; help with extensive Medicare and/or Medicaid requirements; work with school systems to ensure students get everything they need; and find resources for adaptive equipment and technology.
“Families right here in our neighborhoods deal with these difficult issues every day,” Makings said. “These MCOs are for-profit insurance companies that specialize in medical support. They don’t have experience with life-long disabilities.
“If a person with developmental disabilities is labeled ‘medical,’ it implies the person is sick and can be cured,” Makings said. “The MCO will determine how much funding is available and base decisions on the importance of saving money. This is a huge problem.”
Gov. Brownback has insisted case management will not be harmed, Makings said. “But if an MCO is involved, their primary concern could be only with medical issues and saving money. They have no experience with the wide range of Sunflower’s lifetime supports.”