It takes a team to care for kids with special health needs

Gerri L. Mattson, MD, MSPH, FAAP

A pediatrician’s role in the care of a child with special health needs does not end at the conclusion of a visit and is not restricted to physical problems. New guidance suggests that pediatricians have a much larger role to play in this population, and that includes reaching out to schools, community groups, and working with parents to help the whole child thrive.

Gerri L. Mattson, MD, MSPH, FAAP, public health pediatrician, adjunct assistant professor, Department of Maternal and Child Health, University of North Carolina Gillings School of Global Public Health, Chapel Hill, pediatric medical consultant for the North Carolina Division of Public Health, and lead author of the new guidance from the American Academy of Pediatrics (AAP) says the updated recommendations center on the notion that it takes much more than basic medical care to help children with special needs.

“Children with special healthcare needs can grow and thrive, and the report highlights the importance of building strong and healthy children and families,” Mattson says. “Housing, school, food security, transportation, and other social determinants of health can strongly affect the capacity for children and youth with special healthcare needs to experience health and wellness over their life course.”

Children with special healthcare needs also have unique psychosocial needs, and the new guidelines seek to raise awareness of these needs and help providers better coordinate appropriate care and resources. Mattson says the new guidance is an update to a 1993 report and uses a strength-based approach rather than a deficit- or disease-based model.

“The report shares strategies and resources that support psychosocial protective factors for children and youth across special healthcare needs and their families and also how to assess for and mitigate potential risk factors that can vary by the condition and its treatment,” Mattson says. “Pediatric medical home teams are encouraged to increase their collaboration with child care providers, schools, and other community providers as part of care for children and youth with special healthcare needs when they assess and try to address individual, interpersonal, and community psychosocial factors for these children and families.”

Beyond basic medical care

Children with special healthcare needs may suffer from a variety of physical, developmental, behavioral, and/or emotional problems that usually require a multidisciplinary team to successfully manage, according to the AAP. Pediatricians are therefore challenged to the psychosocial needs of this population, with the new guidance offering a roadmap for working with coordinated care teams and other healthcare and community agencies involved in a child’s care.

The guidance, published in Pediatrics, reveals that 19.4% of children polled as part of the 2016 National Survey of Children’s Health (NSCH) have special healthcare needs-an increase from 15.1% in the 2010 survey. Other national surveys have reported increases in prevalence and severity of a number of chronic conditions among children as well, including obesity, asthma, and diabetes, the report states. There are racial and socioeconomic disparities across the spectrum for children and families facing these conditions, the report adds, with higher disease prevalence and lower insurance coverage noted in several minority groups.

“The epidemiology of children and youth with special healthcare needs has dramatically changed. More children with special healthcare needs-especially with a primary diagnosis of a mental health, behavioral health condition, learning or developmental disability-are being seen by pediatric providers in our communities across the country,” Mattson notes. “The recent data from the 2016 National Survey of Children’s Health shows that almost 19.4% of children have special healthcare needs and 42.4% of children and youth with special healthcare needs were reported to have an emotional, developmental, or behavioral issue.”

In addition to those children with chronic health issues that may be caused or exacerbated by environmental or socioeconomic conditions, the numbers of children with genetic or congenital conditions is also on the rise. This resource-intensive population-albeit a smaller part of the population in overall pediatric care-is also increasing, with pediatric inpatient admissions for children with medical complexities doubling between 1991 and 2005, according to the study.

Many more hidden problems

The report also notes an increase in children with health problems that aren’t as visible-those with behavioral, mental health, or developmental disabilities. According to the data, parent reports of conditions such as attention-deficit/hyperactivity disorder, autism spectrum disorders, and bipolar disorders have increased over the last 2 decades, with 42.4% of children with special healthcare needs observed as having emotional, developmental, or behavioral problems in the 2016 NSCH survey.

Whereas physical and mental or emotional problems are on the rise, the AAP report points out that literature reviews have found that these issues-although sometimes independent of one another-often coexist. Physical problems can result in poor self-esteem or coping problems, and this isn’t limited to the child. Families, too, are greatly affected by the impacts of disease processes in children with special needs.

These children and their families also struggle with other stressors, the study adds, including housing and food supply problems, as well as in their exposure to adverse experiences. The AAP report notes that 37% of children with special needs experience 2 or more adverse experiences or toxic stress events such as domestic abuse compared with 18% of children without special needs. Exposure to 2 or more of these events may also play a role in exacerbating chronic conditions, the AAP suggests, and put children with special needs at risk for developing secondary conditions or participating in high-risk behaviors themselves as a coping mechanism.

As chronic physical and psychosocial problems snowball, parents, schools, and community organizations may struggle to offer appropriate support to children with special needs and their families, the AAP notes, but pediatricians may be able to help fill gaps in care. Pediatric medical homes can provide surveillance and screening for psychosocial factors that may present problems, and offer care coordination for additional support services that may help, says the AAP.

Guidelines for care

Access to comprehensive care is key to successful care of children with special needs and their families, the report notes, and the AAP offers specific suggestions for how to accomplish this:

1.    Use the Bright Futures recommendations for caring for children with special healthcare needs and their families. These recommendations include health and wellness promotion and social-emotional health assessments of the child and his/her family.

2.    Utilize practice transformation strategies including quality improvement, pre-visit planning, psychosocial assessments, and after-visit follow-ups with patients and families.

3.    Use team-based care and care coordinators to manage the physical and psychosocial factors faced by this population. This may require integrating or co-managing care with behavioral health specialists or other specialty care teams.

4.    Reach out to child care and school staff to monitor progress in those environments and work together to improve performance and reduce absences.

5.    Advocate for flexible payment design with Medicaid and other insurers to allow for appropriate care and care coordination. Clinicians also can be advocates when it comes to screening tools and interventions, as well as access to community resources.

6.    Promote evidence-based interventions at every level of the medical home, particularly in supporting psychosocial development of the child and support for the parents or caregivers.

“The report highlights the importance for pediatricians to recognize how psychosocial factors can positively and negatively impact health and wellness for children with special healthcare needs and their families,” Mattson adds. “The mitigation of risk factors and promotion of protective factors such as family support, stress reduction, and social services can increase strengths and resiliency.”