Feds set guidelines to improve care for kids with special health needs

The U.S. Department of Health and Human Services has published a blueprint to set the course for improving care. Most parents aren’t satisfied with the services and support they are getting.

The federal government has released new guidelines designed to improve the care of children and youth with special healthcare needs.

The U.S. Department of Health and Human Services, through the Health Resources and Services Administration (HRSA), released The Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs. It appears in the journal, Pediatrics, and was published online June 1.

Roughly one in five children nationwide have a special health need. Nationwide, about 14 million children require specialized care. One in four families has at least one child with a special health need, according to the health and human services department.

At the same time, most parents say it’s difficult to get the care they need for their kids.

About 85% of parents say they aren’t getting the support they need for their children. Parents routinely struggle with getting good communication from providers, early screenings, adequate insurance coverage, and access to support services. Parents also struggle as their children grow into adults and need different services.

Federal officials said the blueprint is aimed at improving equity and access for children and youth with special needs.

Children with special health challenges are more likely to be living in poverty, HHS notes. Black children are most likely to have specialized health needs. One in four Black children have special health needs, compared to one in five white children and one in six Hispanic children.

“Every child deserves the care and support they need to stay healthy and thrive,” Health and Human Services Secretary Xavier Becerra said in a statement.

“With this Blueprint for Change, we’re providing guidelines to improve systems of care so that children with special health care needs can thrive physically, emotionally, and socially,” he said.

The blueprint outlines several principles to improve the care for children with special needs.

  • Eliminate barriers to health equity for children with special health needs, including discrimination, poverty and other risk factors.
  • Programs that fund and deliver services must be designed to reduce health disparities and improve outcomes for all children.
  • Families must be able to access high-quality, affordable, services that support the medical, behavioral, social, and emotional needs of their children. Families must also be equal partners in developing services and programs.
  • All services for children should be easy for parents to nativate when, where and how they need them.
  • Providers of services need to reduce the administrative burdens and processes that make it harder for families to get services.
  • Workers must be trained to meet the needs of children with special health needs, and their families, and they must be culturally responsive.
  • Healthcare services for children with specialized needs and their families are financed in ways that best support them.
  • Health and social service agencies should address social determinants of health to help families thrive.

HRSA Administrator Carole Johnson said the blueprint should help set the course for families and their children with special health needs to get the necessary support and services.

“Children with special health care needs deserve equitable access to care that is coordinated, comprehensive, and child- and family-centered,” Johnson said in a statement.

HRSA’s Maternal and Child Health Bureau developed the guidelines and federal officials gathered input from families of children with special health needs, healthcare professionals, academic institutions, health leaders and federal partners.

For more information, HRSA also has a post on "frequently asked questions" about the blueprint.