Michigan Association of Health Plans

Why Michigan Needs Medicaid Reform: Sheila’s Story

Michigan’s current Medicaid system is negatively impacting families. By integrating physical and behavioral health, Michigan’s communities will become healthier, and Medicaid recipients can receive better care and quality outcomes. Read about Sheila, a Michigan resident who had to endure the broken mental health system, below.

Shelia’s story starts when she and her husband became good Samaritans…and includes a heart attack, years of struggle with Michigan’s broken mental health system for Medicaid recipients, and has, no thanks to that system, a happy ending.

It’s a tale that shouldn’t happen to a child or a family, and one that wouldn’t happen if Michigan reformed its Medicaid system to add mental health care to its already nationally recognized managed care physical health system. Doing so would have allowed Sheila, her family, and the troubled little boy they took in to receive the same high quality integrated mental and physical health care that most of us receive from employers.

Sheila and her husband Bob took into their home their 10-year-old grandson Jake (all names changed to protect their privacy) after Jake’s mother – Bob’s daughter – had entered a period of her own mental illness and was homeless. They worked through the foster care system, understanding that Medicaid would cover health care costs.

What they didn’t count on was the broken mental health care system they entered after young Jake arrived in their home defiant, violent and withdrawn. It was a continuation of the chaotic world he had come from.

“His mother was very ill. She just cut us off completely,” remembers Sheila. “They had been homeless from some time, the mom had moved in and out, a lot of sexual abuse was going on, it was a very chaotic environment.” Sheila and Bob decided to take on the difficult job of raising Jake. They didn’t know how difficult it would be.

“He just wanted to create chaos. He showed me how to kill someone with a knife, he kicked and screamed, he would destroy the house – he was out of control,” Sheila recalls. “We were begging for help, asking for someone to assist with addressing his childhood trauma.”

Because Jake was in the state’s Medicaid system, they were required to contact their local Community Mental Health agency. That agency sent over a social worker.

“She talked with us, but never really engaged with the child. The child was still out of control,” said Sheila. The stress was unbearable and near constant. Jake sensed Sheila was afraid of him, and he was aggressive to her regularly in ways that endangered her, pushing her down and tripping her when he could get away with it.

The lack of support from the CMS system extended to weekends when Jake would go into overdrive. Eventually, Sheila and Bob would take him to the regional CMS crisis center, little more than a room where Jake could yell himself out. “We waited for six or eight hours for him to de-escalate. The staff just said, ‘he says he hates you.’” The crisis center didn’t have the professional staff to address the underlying issues, Sheila says. And when he returned home, the pattern started all over again, day after day. Night after night. Week after week.

Eventually, she had a heart attack, and went into counselling herself.

“My counselor said I couldn’t go home. I was told ‘It’s him or you.’ I went to the department and asked for more help, but they just said, ‘If you can’t handle him, turn him back into the state and he will end up in an institution.’ We didn’t want to do that,” Sheila recalls.

Finally, on their own, they reached out past the local CMH system and found a counselor who was an expert in childhood trauma. But to get the bills paid, they had to run a bureaucratic gauntlet at the local and state level.

Eventually, they received a waiver that allowed Jake to get help outside of the CMS operations. The new psychiatrist said Jake needed intense mental health counselling. “He said he had never seen someone so closed and hardened as this child,” Sheila recalls.

Three years of intense professional help outside of the CMS operation has helped Jake. He’s less violent, and more able to control his emotions and actions. He’s up to grade level in his school, playing football, basketball and baseball. “He still has issues from time to time, I’m not sure what triggers him – but it’s much more manageable,” said Sheila.

Sheila is still furious at the failure of the CMS system to give her choices and solutions outside of its narrow bureaucratic operation. “Foster care parents shouldn’t have to beg for services (from the Medicaid/CMS mental health system)” Sheila says.

“If we had had an integrated system, I would have had someone to call on weekends,” Sheila says. “We would have been able to go to my health plan and say, ‘this child needs help and I’m demanding it.’ I don’t think I would have gotten nearly the run-around. The most important part, we would have had 24-hour care. We would have had respite too – I had very little respite, from the time he woke until he went to sleep I had to stay with him.”

“And we would have gotten to trauma counselling more quickly. The system is broken. I tend to think they didn’t have counsellors available to us.”

She believes that an integrated system, with a health plan contracted by the state and required to provide the same high level of mental health care that they already provide for Medicaid beneficiary’s physical health care, along with choices of providers not permitted in the CMS system, could have speeded the improvements Sheila and Bob have seen in Jake’s condition.

“It’s been a long journey. Other parents shouldn’t have to go through it,” Sheila said.

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