In the vast majority of cases, individuals with disabilities such as cerebral palsy or injuries such as HIE are cared for in a home environment, especially if they do not have medically complex needs. It is very rare that children are placed in an out-of-home environment as minors; now, many more resources are available for helping families obtain the resources needed to make their home accessible and safe. In the vast majority of cases, families overwhelmingly reported that home care for their child produced better outcomes both for the individual and for the family unit as a whole. Furthermore, the employment of the medical home model for children with disabilities has made it easier to obtain patient-centered medical care and provide needed services to a child with more complex medical needs.
In exceptionally rare cases, children with disabilities can be placed in out-of-home care if their parents do not have the resources or community support to safely care for their child, but this occurs in fewer than 5% of cases in the United States. Once the children are no longer minors, their housing options diversify somewhat. In some cases, individuals stay in their parents’ residences. In other cases, they may move into a supported housing environment with individualized residential supports where they can live semi-independently, and in some cases be employed. Current trends in disability discourse support the funding of community-based programs, especially as these programs most often adhere to the concept of ‘least restrictive environment,’ which some other facilities do not share.
While the following options are rarely utilized for the care of minors with intellectual or developmental disabilities, these options do exist and may still be useful in a very small and specific subset of cases. Funding is variable and can depend on the availability of waivers and individual state programs.
One resource for finding available housing arrangements is the Care Lookup website, which provides information regarding a wide variety of continuing care arrangements, including intermediate care centers and other options. Another is Living Arrangements for the Developmentally Disabled, Inc., a nonprofit group that seeks to provide housing for individuals with developmental disabilities.
Types of Out-of-Home Care
- Skilled nursing facilities (SNFs or SNF/DDs; skilled nursing facilities for developmental disabilities): Skilled nursing facilities are known as ‘nursing homes.’ These settings provide care for individuals that require 24-hour skilled nursing daily. Pediatric SNFs focus on caring for a population of young individuals (children and young adults) with complex medical problems; many of these individuals have intellectual and/or developmental disabilities (I/DD). These facilities sometimes also provide respite care on a temporary basis. Standards and services provided in these environments can vary significantly depending on the state.
- Community Integrated Living Arrangement (CILA): A service arrangement for individuals with developmental disabilities that focuses on the service needs of the individual in his or her home or community where a small number of individuals with disabilities live together in an apartment, condominium or modified home setting. CILAs are licensed by the State. Group residences (as described below) are one variety of CILA.
- Group residences/medical group homes: Care settings where a group of eight or fewer individuals with intellectual or developmental disabilities live together in a home-like setting under the supervision of licensed professionals who can assist with certain tasks. These settings are usually adapted single-family homes housed within a residential neighborhood. Admission is regulated into these facilities.
- Intermediate care facilities (ICF/DD; intermediate care facilities for developmental disabilities): These are typically residential facilities that provide daily care for individuals that may need 24-hour support or supervision, but do not need 24-hr. skilled nursing. Typically, assistance is provided with the activities of daily living (ADLs). These facilities can be in a nursing home setting, in small individual homes on a specific campus or in a dorm-style residence.
- Acute care facilities: This fairly new care model provides hospital-level complex interventional care to individuals who require long-term complex medical care. Treatments include mechanical ventilator management with frequent adjustments, frequent medication changes, parenteral fluids, dialysis, complex wound care, and other interventions.
- Residential schools: Some children and adolescents are placed in residential schools which provide expertise and specific curriculum adjustments for individuals with specific disabilities. Some focus on behavioral or psychiatric difficulties, while others focus on physical disabilities. Usually, children return home during vacations.
- Community Living Facilities (CLFs): These facilities are for individuals who need support and guidance in many of the areas related to the activities of daily living but do not require constant supervision; the purpose of these facilities is to prepare residents for more independent living. Residents typically live in apartment-style complexes, with staff available on-site.
- Enhanced foster care: A very uncommon option used only in situations where parents are unable to provide care to their children. Enhanced foster care provides a home for children with disabilities on a temporary basis.