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Blueprint for Change: Caring for Children with Special Healthcare Needs

June 23, 2022

Blog: Family Connections with Pediatrics

According to the families of Children and Youth with Special Healthcare Needs (CYSHCN), the current system of care is not working. Access to care, paying for services, and supports for care are not equal; and the system does not respond to their needs or values. Recent data from the National Survey for Children’s Health (NSCH) support this: 85% of CYSHCN do not receive care in a well-functioning system. If the system is not working for CYSHCN, it is likely not working for children generally⁠—any of whom could have a special health care need at some point in childhood.

In this month’s Pediatrics, the Maternal and Child Health Bureau (MCHB) has published a supplement entitled, “Blueprint for Change: A National Framework for a System of Services for CYSHCN,” putting forth a vision for the future that hopes to fill those gaps.

What is the Blueprint for Change?

The Blueprint for Change is a series of articles built on the vision that CYSHCN should enjoy a full life, from childhood through adulthood, with active community participation. This vision has CYSHCN thriving in systems that support their families and their social, health, and emotional needs, and ensures their dignity and independence. To develop the blueprint, MCHB gathered self-advocates, families, doctors, advocacy groups, local and national organizations, state public health agencies, federal offices, academic institutions, and researchers through a two-year process that included a summit, listening sessions, meetings, and a public request for information.

The articles in the series were authored in partnership with self-advocates, family members, health care professionals, and other stakeholders:

  • A Blueprint for Change: Lays out the background, standards, and strategies to reach the vision
  • CYSHCN Profile: presents a data profile of the diverse population of CYSHCN who often face challenges to access and receive services in a well-functioning system
  • Progress, Persistence, and Hope: tells the story of the public health role in building systems that support CYSHCN and their families
  • Health Equity: presents a vision of health equity to tackle factors that prevent CYSHCN from a fair and just chance to be healthy
  • Quality of Life and Well-Beingi: asks systems to seek, include, and measure outcomes that matter most to children and their families
  • Access to Supports and Services: argues for a system built around the needs of children and families, not just a diagnosis or treatment plan
  • Financing of Services: talks about the need to finance improvements that help achieve access, equity, care integration, and ease the financial drain on families

The last 4 articles, Health Equity, Quality of Life, Access and Financing, form the focus areas of the Blueprint for Change that center around what families consider most important to strengthen the system of care.

What can you do with the Blueprint for Change?

The change that the blueprint calls for will require a lot of hard work and must be done in partnership. The voices of youth and families helped create this blueprint, and now we all need to be a part of making it happen.

  1. Read the Blueprint for Change. Read the article that connects most with your child and family experiences or needs. Or read them all to see the connection between the four focus areas (equity, quality of life, access and financing) and the need for layers of strategies to bring about change.
  2. Share the blueprint with any and everyone involved with your child’s care.
  • Email a link to the supplement or make copies to hand out. Highlight key points that echo your experience or conversations you have had with care team members.
  • Don’t limit sharing to just health care. For example, if your child has an Individualized Education Program (IEP) or 504 plan, think about sharing with that team as well.
  1. Use the blueprint as a lens for action. If you are part of an advisory, project, or any other activity at the local, state, or national level to improve the care of CYSHCN, then bring the blueprint and start some conversations.
  • Plan a meeting to discuss the blueprint. Gather ideas, input, and create an action plan.
  • Use the blueprint to advocate with policymakers of all types, such as hospital system leaders, legislators, state agencies like Medicaid, Title V, and Department of Health.

i The author of this blog is the lead author of the Quality of Life and Well-Being article.

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