Helping Families Raise Children With Special Health Care Needs at Home

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One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6–7). Congregate care, in this regard, is defined as any setting in which 4 or more persons with disabilities reside, regardless of whether the residence is located in the community, such as a school, group home, nursing facility, or institution. Although this particular public health objective may reflect an unfamiliar concept for some pediatricians, the American Academy of Pediatrics supports the goals and objectives of Healthy People 2010 as well as the medical home and the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families. To advise families caring for children with special health care needs effectively, the pediatrician should be familiar with the principles of permanency planning and well informed of local family-support services. The pediatrician should also work with the family to identify the range of long-term supports and services available for their child. These supports may include respite for biological families as well as various additional parenting models such as shared parenting, foster care, alternate parents, and adoption. Although family-based supports are preferable, families may consider other out-of-home placements including group homes, placement in a nursing facility, or other forms of institutional care when sufficient family-based services are not available. Once all the options are understood, issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals with expertise in permanency planning and long-term supports and services.

The purpose of this clinical report is to educate physicians on the philosophy of providing a permanent family environment (permanency planning) for all children, including those with special health care needs, and the importance of adequate and accessible community services to support and maintain the well-being of all family members.