I think besides actual life-and-death situations, that the hardest choice for caregivers of children with special needs of any age is out-of-home placement. I want to preface this by saying in general I am an inclusion advocate and that out-of-home placement is usually the last resort. This is also an individual decision based on family circumstances. I have heard from parents of older children that they are fearful of the physical strength of the child, or perhaps size is an issue for parents who could no longer lift the child daily for personal care. I have also heard from parents of children with behavioral issues that they are concerned the child with hurt themselves, or someone else. I’ve also been contacted by families who are worried about the effect on siblings.
In most cases, community based supports and services lead to success. Also it doesn’t have to be “zero to 60” because there are a variety of placement options that families may not know about. For example, there may be therapeutic day programs that have the structure that the child needs and then they can return home, just like school, and parents can also get training. It may be something as simple has home modifications for lifts, accessible bathrooms, modified vans, etc. which allows the individual to remain at home. There are even interim behavioral health programs for students who may have been hospitalized for mental illness and aren’t yet ready to return to school, so this is a good in-between phase. Good discharge planning can avoid readmission and keep children at home. If residential placement is needed for a child to receive a free, appropriate public education (FAPE), the placement is at the district’s expense. For children of transition age (14 and above), Centers for Independent Living (CILs) have “nursing home diversion” programs, because sadly children can even end up in a nursing home and Medicaid which pays for long-term care has an institutional bias, even though it’s less expensive to provide home care for individuals who need around-the-clock-care. CILs will help with activities of daily living (ADLs) and independent living (IL) skills to maximize independence.
The American Academy of Pediatrics is coming out with a paper on out-of-home placement which I reviewed. I found that pediatricians agree that this is done in rare cases as a last option for desperate families. The pediatricians are non-judgmental and understand the challenges for families. Lack of community based supports and services are the single largest factor in institutional placement. Our Medical Home project found that the most requested information was linkage to community supports. More people enter institutional care due to caregiver burnout rather than deterioration of their condition. Most children who require help with ADLs and even skilled nursing care, can live with their families, with appropriate supports. The disability community, and evidence-based practices, argue for the opportunity with non-disabled peers in the least restrictive environment (LRE) to the maximum extent possible. Listed below are resources for families to help support their child with special needs.
Centers for Independent Living
Family-to-Family Health Information Centers
Governor’s Councils on Developmental Disabilities
National Alliance on Mental Illness (classes/support)
Parent Training and Information Centers (education advocacy)