Out-of-Home Placement for Children and Adolescents With Disabilities—Addendum: Care Options for Children and Adolescents With Disabilities and Medical Complexity

Abstract

Children and adolescents with significant intellectual and developmental disabilities and complex medical problems require safe and comprehensive care to meet their medical and psychosocial needs. Ideally, such children and youth should be cared for by their families in their home environments. When this type of arrangement is not possible, there should be exploration of appropriate, alternative noncongregate community-based settings, especially alternative family homes. Government funding sources exist to support care in the community, although there is variability among states with regard to the availability of community programs and resources. It is important that families are supported in learning about options of care. 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.

Family Quality of Life in Children with Severe or Profound Disability: Home Versus Residential Care

“…1 As a result, governments have adopted a deinstitutionalization policy 3 that encourages the transition of people with IDD from institutions to community-and home-based settings while providing needed support and resources for ensuring their welfare and participa-tion. 4 However, studies have demonstrated various challenges, including emotional, health, and economic, faced by caregivers of a child with IDD residing at home. 5 Specifically, studies have shown adverse mental health impacts on the family members, including depression and anxiety, 6 stress, 6 and negative emotions, such as shame and guilt.…”

The Moral Imperative of Home Health Care for Children: Beyond the Financial Case

“…The American Academy of Pediatrics considers in-home, community placement to be the most desirable option, although there are circumstances in which out-of-home placement is more appropriate. 4 For in-home care to succeed, families need myriad services to sustain the children and allow the families to thrive. Home care services provided by nurses and other caregivers are vital.…”