Promoting quality care for children and youth with special health care needs in Wisconsin.
Team Engagement for Quality Improvement Welcome Booklet, P-02349
This booklet is an introduction for families and health care teams working together to improve care for children and youth with special health care needs. This booklet contains tips from health care team members and family representative team members to help you and your team in your quality improvement work.
Coordinated Care in a Medical Home
Children and youth with special health care needs (CYSHCN) often require more medical care, mental health services or education services than other children. They may be enrolled in multiple state and federal programs for their specific needs, including Medicaid, Social Security Income, early intervention and more. As a result of complex conditions and many providers, families may need help coordinating this care.
A medical home is a comprehensive way of providing health care to children and youth. Medical homes are most commonly composed of primary care clinicians (such as pediatricians, family physicians, pediatric nurse practitioners and physician assistants), care team members, and family members. In a medical home, care is coordinated based on family priorities. It is also accessible, continuous, comprehensive, compassionate and culturally effective. There is growing evidence that care provided within the medical home supports the Institute for Healthcare Improvement's Triple Aim, including improved patient and family experience, overall improvement in population health and, for certain patient populations, reduced cost of care.(PDF)
The CYSHCN Program works to assure that children have a primary care provider who serves as a medical home, providing comprehensive, family-centered care and helping to coordinate the families' medical and non-medical needs within their community. The Regional Centers provide support and technical assistance to families and providers in strategies to strengthen medical homes.
What is a Medical Home? is a brochure with information for families to use before, during, and following medical appointments; and outlines the responsibilities of families and their health care teams in providing a medical home.
Wisconsin Medical Home Initiative
The Wisconsin Department of Health Services' Title V Children and Youth with Special Health Care Needs Program (CYSHCN) and Maternal and Child Health Program, located in the Division of Public Health, provides funding for the Wisconsin Medical Home Initiative (WisMHI). WisMHI, an initiative of the Children's Health Alliance of Wisconsin, promotes children’s health and development through its direct support to primary care clinicians and families. Training, technical assistance and resources are provided to support medical home implementation with a focus on developmental screening, behavioral health integration and family partnership.
Wisconsin State Plan to Serve More Children and Youth within Medical Homes (including those with special health care needs)
The Wisconsin CYSHCN Program received notification of funding for a 3-year grant project titled the Wisconsin CYSHCN Medical Home Systems Integration Project beginning September 1, 2014. Funded by the federal Maternal and Child Health Bureau of the Health Resources and Services Administration, this project aims to increase the number of CYSHCN served within a medical home by 20% or approximately 17,735 more CYSHCN by September 2017. The most recent National Survey of CSHCN (2009-2010) estimated approximately 200,000 Wisconsin children have special health care needs, and 44% of them receive care within a medical home. Care within a medical home is typically provided by a primary care clinician and his or her care team, in partnership with parents. Health care outcomes and family satisfaction are consistently higher for children served within medical homes.
The state plan was written to outline steps to achieve more children receiving care within medical homes, along with associated measures to track their accomplishment. The Department of Health Services (including Public Health and Medicaid) and statewide health care and community resource professional leadership met four times from January to July 2015 to identify strategies to be considered for inclusion in the state plan. In addition, guidance was offered from the National Academy on State Health Policy, National Improvement Partnership Network, and the Wisconsin Maternal Child Health Bureau needs assessment process. The plan identifies three strategic areas: Understanding and Promotion of Medical Homes; Performance and Quality; and Financing. Strategies target families, clinicians and systems in an effort to achieve the goal of serving more children within a medical home.
National Medical Home Resources
National Center for Medical Home Initiatives for Children and Youth with Special Health Care Needs
American Academy of Pediatrics
Patient-Centered Primary Care Collaborative
American Academy of Family Physicians
Center for Medical Home Improvement
Wisconsin Care Coordination for Children and Youth Mapping Project
During the development of the state plan, it was recommended that a strength and gap analysis (mapping exercise) be completed of current care coordination activities that are being implemented in different systems and organizations across the state. Interviews were conducted with a diverse group of systems, providers, and family representatives to answer these questions:
- What and how is care coordination being implemented for children and youth currently in Wisconsin?
- What gaps exist?
- What assets can we build upon and share?
- Due to resource limitations, care coordination services were routinely offered at a level designed to ensure more families could receive at least some care coordination. Most models are designed to build family skill and confidence in taking on their own child's care coordination over time.
- Having access to information about what services/supports were available and where to receive them shortly after the diagnosis and continuing through the lifespan was a consistent challenge cited by families. More than one parent indicated that dealing with insurance issues is the most challenging aspect of having a child with special health care needs.
- No provider or system representatives indicated that they knew of an existing model that would fully cover the cost of pediatric care coordination for all children.
- Electronic health records (EHRs) can facilitate the use of care plans when there are templates within the system, when they can auto populate, and when they can be shared in locations where others can access them. The lack of flexible EHRs creates more work for providers to create, update and share care plans. All families indicated that they had access to written plans or medical summaries in some form, and that they were the ones who facilitated communication between providers about their child's care needs, including providing copies of written care plans.
Wisconsin has five Regional Centers for Children and Youth with Special Health Care Needs that can help families get answers, find services, and connect with community resources. Their services are free and private.