Children with Special Health Care Needs

Transition Plan for Healthy Children

Children with Special Health Care Needs

According to the 2018-2019 National Survey of Children’s Health, approximately 19 percent of children and youth have special health care needs (CYSHCN).  National surveys have shown a significant increase in the overall prevalence and severity of specific chronic conditions, including asthma, diabetes mellitus, and obesity. In addition, the prevalence of children with medical complexity (CMC) like congenital, genetic, or acquired multisystem conditions is also on the rise. For example, the prevalence rate of autism in children has risen from 1 in 68 in 2016 to 1 in 54 in 2020. CYSHCN often face barriers to care, as there is a severe shortage of pediatric subspecialists to care for them, and racial disparities in care also delay diagnosis for Black and Latinx children. In addition, CYSHCN are more vulnerable to COVID-19 and now face more stringent restrictions on their social interactions. Even before the pandemic, too many lacked adequate support systems and care in their communities.

Allocate research funding to address health disparities in children and youth with special health care needs. Many CYSHCN have poorer health outcomes, reduced access to quality care and higher rates of co-occurring conditions that result in higher morbidity and mortality. The National institutes of Health (NIH) should increase funding for the National Institute on Minority Health and Health Disparities to support translational research to address these disparities, particularly in Black and Latinx children who tend to be diagnosed at much lower rates.

Expand training opportunities for developmental and behavioral pediatricians. Despite the rise in prevalence of children diagnosed with Autism Spectrum Disorder (ASD), there is a shortage of health professionals to provide care for these children, as well as youth with other developmental or intellectual disabilities. In order to alleviate the lack of access to need services for this population, Health Resources and Services Administration (HRSA) should prioritize additional training opportunities in the Developmental Behavioral Pediatrics (DBP) Training Program, and the Leadership Education in Neurodevelopmental and other Related Disabilities (LEND) Training Program to help build and grow the next generation of physicians to care for children with ASD.

Facilitate greater family involvement in the Early Hearing Detection and Intervention (EHDI) program. The Health Resources and Services Administration (HRSA) should encourage meaningful family involvement at all levels in the EHDI program. All family meetings at the Early Intervention (EI) and Accessibility Resource Center (ARC) levels should have family advocates present unless the family declines. On a national level, HRSA should develop and support a network of national resource centers with the capacity and competency to provide training and technical assistance to state EHDI systems to provide population-based services.

Recognize and support family caregivers. Health and Human Services (HHS) should develop, maintain and update an integrated national strategy to recognize and support family caregivers, and ensure that any recommendations made by the RAISE Family Caregiving Advisory Council address the needs of family caregivers providing support to children with special health care needs and adults of any age with disabilities and chronic conditions.