Michigan project highlights needs of medically fragile foster children

A recent collaboration is working to address the many challenges faced by medically fragile foster children, who may live with chronic disorders or developmental disabilities.
This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.

Teenagers can be a "tricky population," says Susan Sheppard, COO of Grand Rapids-based mental health service provider Arbor Circle – and when a teenager becomes a ward of the foster care system, the challenges escalate. When that teenager also lives with a diagnosis of medical fragility, the challenges might seem insurmountable.

Medically fragile foster children may be dependent upon medical equipment like heart monitors or ventilators, may live with chronic health or genetic disorders, or may have developmental disabilities such as cerebral palsy or autism. Alex* is one such teenager. Despite his medical challenges, a family member stepped up to foster him in 2019. With the help of Sheppard and the staff at Arbor Circle, this reinvented family unit was able to successfully adapt and thrive. The family member officially adopted Alex in 2022. 
"This was the absolute best result," Sheppard says. "When foster parents feel informed and empowered and supported, their care can be consistent and sustainable. Without that support, caring for a medically fragile foster child would be very challenging."

The Michigan’s Medically Fragile Foster Care Analysis and Planning Project (MI-MFFC) aimed to improve foster care for these children. As one of many collaborative partners in the statewide initiative, Arbor Circle facilitated the project, which sought to lay groundwork for developing a statewide program to meet the special needs of medically fragile foster children. Other collaborators included foster parents, fostering agencies, physicians, attorneys, and representatives of the Michigan Department of Health and Human Services (MDHHS).

While the project has concluded, it has left behind data, recommendations, and a host of readily available online resources for child welfare staff, foster parents, biological families, court staff, and medical providers. The project also raised awareness about the unique challenges faced by medically fragile foster children and the foster parents caring for them.

"I would love for the vision and the steps that were outlined in the project to really come to fruition for the state," Sheppard says. "It was truly a collaborative, awesome effort. We wholeheartedly supported the project. We certainly use the resources that were created and are available."

When placing a medically fragile foster child, Arbor Circle increases coordination and collaboration with the child's medical teams and increases training and support for the foster parent(s). Without these resources and supports, foster parents can feel nervous about making a mistake when caring for a medically fragile child. Sheppard believes that these supports made Alex’s long-term placement and ultimate adoption possible.

"That coordination happens with any case, but when it's complex, it's just ramped up. We have more meetings, more conversations, more information, and additional training," Sheppard says. "For example, we had a child in care that had a feeding tube, so staff and foster parents went through that training to learn how to do that and do it well. It's important for the staff to be present and a part of that because we're a main support for the foster parents."

A higher risk for health issues

Overall, children in foster care are at higher risk of having health complications due to neglect and abuse. Medically fragile foster children are even more vulnerable. Some research suggests that medically fragile foster children experience higher levels of maltreatment in care.

"They are a smaller part of our caseload and a smaller part of the foster care system. We probably only have 130 to 140 children with medically fragile diagnoses at any given time in the state," Sheppard says. "Our most vulnerable children and families are really at high risk of secondary trauma. Anything that we can do to improve the system, especially with current workforce shortages, is needed now more than ever."
Amy Bailey.
According to the MI-MFFC project final report, medically fragile children can be difficult to place and require highly skilled foster parents. Child welfare staff, attorneys, and judges who are not trained in medical treatment may lack a full understanding of the child’s diagnosis. If a child is placed in a home incapable of meeting their needs, their health can suffer and, in some instances, they may even die. Amy Bailey served as Arbor Circle’s lead on the MI-MFFC project until she left to serve in the MDHHS Office of Child Safety and Program Compliance.

"One of the pieces that we found is that there was a lack of common language and common terminology between the child welfare system, the courts, and the medical system. So you saw a lot of misinterpretation of what was being said and how it was framed," Bailey says. "It has to be all three of those systems moving forward together. In the cases where there was a strong integration, that's when children and families got the best things they needed. That coordination is how we make sure that kids are placed in the best homes, whether it's with a relative, a foster home, [or] returning to the biological parent or adoptive parents."

While many states around the U.S. have models specifically designed to meet the needs of medically fragile foster children and their caregivers, Michigan does not. However, MDHHS does have a protocol for helping prospective foster parents identify the skills they will need to adequately care for children placed in their care.
Jeanette Scheid.
"We have ways of providing information about children that helps in matching children and families," says Dr. Jeanette M. Scheid, medical consultant at MDHHS' Children’s Services Agency. "I do think that the information in the trainings and the resources that MI-MFFC has done will go a long way towards helping foster care workers think about this issue."

Special care for special needs

Another agency placing foster children, Judson Center keeps its child welfare workers deeply involved in supporting foster parents who care for children with special medical needs. Judson Center is a provider of mental and behavioral health services for families, individuals on the autism disorder spectrum, and people with disabilities in Southeast Michigan.

"Once we place a medically fragile child in one of our homes, if the child is in the hospital, the worker will go to the hospital before they're released, typically with the foster parent," says Khadija Walker-Fobbs, Judson Center chief strategy officer. "The doctors and nurses train them on the child’s needs."
Khadija Walker-Fobbs.Walker-Fobbs notes that MDHHS health liaison officers are a great help for foster parents who need to access special services for children in their care. Medically fragile children often have multiple ongoing appointments for medical care and therapies. Judson’s child welfare staff join the foster parents on many of these appointments.  

"When the worker attends, they can really understand everything that's going on," Walker-Fobbs says. "Once the child is placed in the home, they make sure that the foster parents are getting as much support as possible. They make sure that the child is getting services that the doctors recommended."

Judson Center’s child wellbeing fund helps foster families deal with the extra expenses of caring for a special needs child. Recently, the fund helped a relative providing foster care for a 1-year-old girl who had undergone several orthopedic surgeries to correct hip dysplasia and clubfoot.
Michelle Carlton.
"The relative who was caring for her needed special equipment while she was in the casts, a special highchair, and other equipment like that," says Michelle Carlton, Judson Center program manager for adoption and foster care. "I'm sure we could have gone through Medicaid but that might have been a process. We were able to use that child wellbeing fund to get this stuff to the foster parent right away."

In its final report, the MI-MFFC project workgroup made several recommendations including gathering additional data; offering child services workers, courts, physicians, and foster parents more trainings, tools, and resources; and working with the MDHHS to develop a statewide Medically Fragile Treatment Foster Care model. Although the formal MI-MFFC project is finished, Scheid says a group of project collaborators continue to meet, and they already have some trainings scheduled for this year.

"There are great opportunities to look at where we can partner with the folks who administer the Medicaid health plans, to continue relationships with our primary care community, and to continue our relationships with a team that supports children with special healthcare needs," she says. "So yes, I think that this work is going to continue."

* Name changed to protect the individual's privacy.

Estelle Slootmaker is a working writer focusing on journalism, book editing, communications, poetry, and children's books. You can contact her at [email protected] or www.constellations.biz.

Photos courtesy of the subjects.
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