1. Pituch, Kenneth J.
  2. Simon, Natalia
  3. Weaver, Meaghann S.
  4. Lindley, Lisa C.

Article Content

In this reflection, we briefly share our experience at the Michigan Partners for Children (PFC) to develop a new community-based palliative care program for children with medical complexity (CMC) including neurological and neuromuscular conditions and the steps we are taking for the PFC to become a Medicaid benefit by demonstrating outcomes, fostering relationships, and identifying a payment model.1


The adult hospice and palliative care environment has a defined approach to identifying, testing, and implementing new Medicare benefits through the CMS Innovation Center.2 An example is the Medicare Care Choices Model of adult concurrent hospice care, which was developed, tested, and evaluated with guidance from hospice and palliative care clinicians and researchers. However, there is no equivalent or established development process for new Medicaid benefits for children. In most cases, programs must be privately piloted and funded often by children's hospitals or foundations with the outcomes presented to state-level Medicaid offices to request ongoing support.3,4 Before new benefits are considered by state Medicaid, critical questions need to be answered regarding program effectiveness and efficiency. Additional considerations include the capacity of state-level agencies within Medicaid for future sponsorship, and sustainability and application of existing and new funds. This "proof-of-program" process represents a long road requiring several years of piloting a program before it is ready for adoption and implementation by Medicaid.


There are an estimated 1500 Michigan CMC. This subset of special needs children receives care from multiple healthcare specialists such as neurologists, rehabilitation specialists, gastroenterologists, pulmonologists, pediatric surgeons, urologists, and therapists. They often do not fit into established multidisciplinary programs that exist for children with cancer, congenital heart disease, transplant, cystic fibrosis, or other conditions. Many of these children have limited mobility, take multiple medications daily, and depend on technology and equipment such as feeding tubes or respiratory devices to help them survive and integrate into their families and communities.5 The services, primarily hospital based, provided for CMC represent some of the most expensive cumulative charges in our healthcare system.6 For most parents, life revolves around frequent trips to specialty clinics, pediatrician offices, or emergency departments that often result in hospital or intensive care unit admissions. It is a cycle that can be overwhelming, frustrating, time consuming, and filled with anxiety.


In 2018, we launched a pilot community-based pediatric palliative care program for CMC called Michigan PFC. This program is a collaboration with Michigan Medicine (University of Michigan), C.S. Mott Children's Hospital, and the Hospice of Michigan, which is funded for 1 year by the Michigan Health Endowment Fund and subsequently subsidized by the C.S. Mott Children's Hospital. Modeled after the California PFC program and our understanding of supporting pediatric patients and their families,7 our program works with the patient's primary care provider to bridge the gap between the various specialists and subspecialists to support the children and their families. Partners for Children palliative care services include conducting visits to the home or telehealth visits, facilitating overall symptom management, assisting in the development of a daily and/or emergency care plan, identifying goals, supporting conversations with school personnel, connecting families to resources, and coordinating care across medical specialties and clinics. Our staff consists of nurse practitioners, social workers, a care coordinating registered nurse, hospital palliative care physicians, and administrative staff. Although most children have Medicaid or Michigan Children's Special Health Care Services coverage, children are eligible to enroll in the PFC if they take multiple medications, have 3 or more specialists/subspecialists, and are not enrolled in an existing comprehensive care clinic at the Children's Hospital.


Demonstrating Outcomes

To date, the PFC has served more than 100 children in an area that covers a 75-mile radius from the C.S. Mott Children's Hospital and has a growing waiting list. We measure several key outcomes of the program. First, we capture parent satisfaction with the program. We use a standardized instrument, Quality of Life Questionnaire, to obtain data. Second, we measure healthcare utilization through the number of hospitalizations and intensive care unit stays for the children. Finally, we calculate the costs of the program. The program budget is $750 per enrollee per month, and we can assign direct costs of the program. Our present estimate is a monthly cost savings of more than $2000 per enrollee per month to Medicaid for those children who have Medicaid coverage. Our palliative care personalized experience and programmatic outcomes are integral to families, children, and Medicaid.


Fostering Relationships

Michigan has a long history of providing hospice and palliative care for the children in the state, which has included partnerships with key stakeholders. For the PFC program, those partnerships are strengthened. The partnership between C.S. Mott Children's Hospital, Hospice of Michigan, and the University of Michigan ensures that the project is staffed and has the resources and infrastructure to run the program. Financial support for clinical and nonclinical activities has been provided by the Michigan Health Endowment Fund, C.S. Mott Children's Hospital, Michigan Department of Health and Human Services, and Michigan Children's Special Health Care Services. We partnered with primary care providers and pediatric specialists or subspecialists such as neurologists to coordinate care and ensure all providers were properly reimbursed. We also developed a stronger partnership with our Michigan Medicaid office. As a key stakeholder, we mutually agreed on outcomes to measure, identified Medicaid agencies that might house the program, and strategized about Medicaid payment options. We have a team prepared to transition the palliative care program to a Medicaid benefit.


Identifying a Payment Model

The PFC team works with the Michigan Medicaid administrators and a Michigan Health Endowment Fund consultant to identify a sustainable future payment structure for PFC. Because the primary payor will be Medicaid, there are a variety of payment structures within Medicaid that fit the criteria of the PFC program. We explored Medicaid waivers (eg, 1915, 2703, 1115) to enhance community-based services: Family Opportunity Act that expands Medicaid eligibility to "severe disability," Advancing Care for Exceptional Kids Act providing care coordination and palliative care for CMC through health homes, and Early and Periodic Screening, Diagnostic, and Treatment that covers medically necessary services, along with a host of other federal regulations. Through our exploration of payment options, we found that a combination of the Advancing Care for Exceptional Kids Act and a 2703 Medicaid waiver that allows for state-level expansion of the health home model will finance the community-based palliative care services covered under the PFC (eg, care coordination, comprehensive case management, transitional care, patient/family support, referrals to community services, and providing payments to designated health home service providers).


In summary, as the Michigan PFC palliative care program enters its fourth year, we have prepared the program for coverage and reimbursement by Medicaid. We have shown promising results on satisfaction, quality of care, and cost of care. In addition, we have worked with key stakeholders to ensure the program meets the needs of children and their families for continuous and coordinated palliative care. Finally, we have recognized the importance of doing our homework to identify and understand the various payment options and of working with Medicaid to ensure financial sustainability when PFC transitions to Medicaid.




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