The American Academy of Pediatrics (AAP) article fails to emphasize the developmental imperative for all children to grow up in loving, nurturing families, whether their family of origin or another family, and that need is just as great or greater for children with complex support needs. The article lays out details for pediatricians only about institutional care when children with complex support needs are no longer able to continue to live with their families.
Some families may be seeking additional supports for their child at home, and for those families additional supports may be critical. But the AAP article leaves the impression that there are only 2 options: living at home with supports or in one of a variety of congregate care settings described in the AAP article. There is another option that honors the child’s developmental needs to grow up in a loving, nurturing family. A number of states have developed the capability for a child’s family to choose an alternative family who welcomes the child into their home and raises the child with the input of the child’s family. Alternate families are not part of the child welfare system. No judgment of neglect is made when parents are no longer able to care for their child, whether because they have a chronic health condition, their child’s episodic health care crises put their jobs at risk, or they face some other barrier. We recommend first exploring additional supports for the family and child to make it possible for them both to thrive. But sometimes that is not enough. And when that happens, the child should not be forced to forgo the developmental benefits of a nurturing family and have some form of institutional care as the only option. Settings with only shift staffing patterns deny the child an attachment to a single adult.
In some states these arrangements are funded and supported under the name of life sharing, host homes, resource families, or shared living. Because there is variation between states in how to access this alternate family service, we strongly recommend that each state AAP chapter establish a mechanism to identify the agencies in their state that offer life sharing and provide pediatricians with an outline of the process that includes specific contact information and how they can assist in making those arrangements, such as making a referral or providing documentation of medical needs.
We appreciate that there will be instances when a child is not able to remain at home with his or her family. When this occurs we firmly believe that the AAP could play a helpful, perhaps critical role in encouraging states to make family-based alternatives more readily available to children with complex health care needs. It is critical that pediatricians have information about alternate families as the next best choice rather than directing families to institutional care as the only referral option because they lack knowledge of how to make referrals to agencies that can assist with arrangements for alternate families.
Conflict of Interest:
Elisabeth T. Healy is the executive director of the Parent Education & Advocacy Leadership Center.
- Copyright © 2015 by the American Academy of Pediatrics