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AAP details out-of-home living for children with disabilities
Despite a decline in the number of residents in state facilities, one-third of American children, adolescents and adults with intellectual or developmental disorders were on waiting lists for community-based support services in 2010, according to a recent AAP clinical report.
While the benefits of caring for a child with intellectual or developmental disorders (IDDs) at home are significant, researchers said out-of-home placement options sometimes are necessary.
“Caring for children and youth with complex needs and their families requires ongoing commitment from the primary care physician and the subspecialists who may be providing the majority of the child’s medical care,” the researchers wrote. “Ideally, the medical home model should provide this type of support; however, there are circumstances in which some parents need more care than can be provided from the medical home and in the community, given the current state of available resources.”
Several out-of-home options are available for children with IDDs, according to researchers. Skilled nursing facilities, or nursing homes, offer 24-hour care and can provide non-oral feeding, suctioning or other skilled services. These vary widely, and not every facility can provide more advanced services such as tracheostomy care, mechanical ventilator support, intravenous fluid or dialysis. Similarly, physician presence and standards of care differ since federal regulations are broad.
Other options include intermediate care facilities for non-24-hour nursing, public and private residential schools providing educational curricula at the expense of less specialized care, medical group homes and specialty hospitals providing long-term, technically demanding care.
Temporary options also exist for children whose conditions may improve. Transitional facilities provide short-term specialized care before a child is discharged or while a family is being trained for home care. Rehabilitation hospitals are similar but focus on more rigorous therapy intended for improvement, making these facilities unusual for children with IDDs.
Children in out-of-home care are at greater risk for infectious diseases, the investigators said. Their care is more regimented due to nursing protocols and less flexible than a parent’s judgment, although sometimes such care can benefit children with IDDs. While most facilities offer educational options for those unable to attend public schools, children often have limited interaction with nondisabled peers.
The transition to adulthood can be an issue in many residential facilities specifically licensed for pediatric care. If they are unable to be placed elsewhere, patients who have been in residential placement for long periods have difficulties adjusting upon discharge. For those that remain in pediatric settings, health problems may develop that cannot be treated outside of a specialized adult care facility.
When a parent decides the best treatment option for their child, financial considerations often are a primary concern. Although federal insurance and social programs may cover most expenses, certain facilities may decide that more medically fragile children cannot be cared for adequately for the accepted financial allocation. This can force children who require highly skilled care to stay at home, a potential issue when a family’s financial situation limits resources.
Physicians should play a significant role in providing care and helping parents or primary caregivers decide how to best care for the child, the researchers wrote. Pediatricians may be challenged when they believe that family care may not be the best option, yet families also can become frustrated if perceiving that health care professionals expect them to care for an especially difficult child at home.
Despite reporting continuous guilt and worry, parents generally did not regret the decision to place a child with IDDs in an out-of-home residential setting, the investigators wrote.
“The importance of trying to support families to care for the child at home cannot be overstated,” the researchers concluded. “However, parents of children with significant special health care needs may, at some point, consider out-of-home placement.”
Disclosure: The researchers report no relevant financial disclosures.
