Pediatricians are being encouraged to help families of children with developmental disabilities find solutions if they’re struggling to care for their kids at home.
In new guidance, the American Academy of Pediatrics said that home with family is the best place for kids with significant intellectual and developmental disabilities and complex medical needs.
However, acknowledging that such situations are not always workable, the pediatrics group says its members should serve as a resource for families.
“Pediatricians can serve as advocates for their patients and their families to access community-based services and to increase the availability of resources to ensure that the option to live in a family home is available to all children with complex medical needs,” states the clinical report published recently in the journal Pediatrics.
The information builds on similar guidance issued two years ago advising doctors on how to assist families considering out-of-home placements.
Those recommendations focused on congregate care settings such as skilled nursing facilities, intermediate care facilities, specialty hospitals, residential schools and medical group homes, but pediatricians asked for more information on other out-of-home options which led to the new report.
In addition to congregate settings, the guidance indicates that parents may consider host families, shared care arrangements, voluntary foster care or placement with other relatives if they are unable to continue providing assistance at home for kids with complex medical needs that often involve 24-hour care.
Doctors should also help families navigate offerings through Medicaid home and community-based services waivers and other programs that may help them get the support they need to allow even those with complex issues to remain at home.
“Children with significant disabilities and complex medical conditions, like all children, need stable homes with loving families and caregivers who provide the essential physical and emotional resources to promote well-being,” according to the report. “Family life with caring and loving caregivers should be the goal for every child with disabilities and medical complexity.”