Out-of-Home Placement for Children and Adolescents With Disabilities

Abstract

The vast majority of children and youth with chronic and complex health conditions who also have intellectual and developmental disabilities are cared for in their homes. Social, legal, policy, and medical changes through the years have allowed for an increase in needed support within the community. However, there continues to be a relatively small group of children who live in various types of congregate care settings. This clinical report describes these settings and the care and services that are provided in them. The report also discusses reasons families choose out-of-home placement for their children, barriers to placement, and potential effects of this decision on family members. We examine the pediatrician’s role in caring for children with severe intellectual and developmental disabilities and complex medical problems in the context of responding to parental inquiries about out-of-home placement and understanding factors affecting these types of decisions. Common medical problems and care issues for children residing outside the family home are reviewed. Variations in state and federal regulations, challenges in understanding local systems, and access to services are also discussed.

Health and Functioning of Families of Children With Special Health Care Needs Cared for in Home Care, Long-term Care, and Medical Day Care Settings

“…Trends in health care policy indicate a movement away from long-term institutional care to more home care despite the extensive medical needs characteristic of this growing population. 1,5,7 Data indicate that many parents, guardians, and other family members are already physically, mentally, functionally, socially, and financially challenged. These challenges need to be targeted with resources to sustain specific community-based support structures to help parent/ guardian caregivers of children with medically complex technology-dependent needs.…”

“…Today, care options available for families of these CSHCN remain limited due to lack of available health care, school, and community services. Some parents use out-of-home placement in hospitals, transitional care units, rehabilitation centers, or long-term/residential facilities [3][4][5] ; others use medical day care programs allowing continued employment, school, and care for other children or family members 6 ; other parents reduce or resign employment to provide home care creating a hospital-like environment in the home with or without home health nursing services.…”

Statement of the Problem: Health Reform, Value-Based Purchasing, Alternative Payment Strategies, and Children and Youth With Special Health Care Needs

“…37 Children whose families experience challenges in any or all of these areas are at increased risk for poor health outcomes and increased costs, including expensive permanent institutional care. 50 …”

Care of the Child with Special Needs

“…Advances in technology, support services, such as home nursing and therapies (physical, occupational, and speech), and changes in laws (Supplemental Security Income, federal education laws, Katie Beckett Act, Americans with Disabilities Act, and Affordable Care Act), [3][4][5] make this possible. At the center of providing the medical-home care is the child.…”

“…Children with special needs have complex medical disease, require technologic support, have developmental delays, with or without physical disability, or intellectual disability. 2,3 Their care plans are more extensive, the medical and social needs are different, and the physical examination is more difficult to perform. Providing maintenance care is important.…”