Impact Feature Issue on Parenting Teens and Young Adults with Disabilities

If families are to help their young adult son or daughter successfully transition to life away from the family home, it is important that they have accurate information about the realistic options available. The systems for providing housing and support services for persons with intellectual and developmental disabilities (ID/DD) vary among the states and within individual states, as does the terminology describing the different options. It is very important to establish a good relationship with your young adult’s county case manager (if your son or daughter has none, contact your county social service agency to request that one be assigned) so that you can get a clear and complete picture of all the services and supports for which your son or daughter is eligible, as well as their availability. 

Minimum Standards

• Services must be provided in a timely fashion.
• Services must be provided in the “least restrictive alternative” (i.e., the most integrated and inclusive setting and circumstances possible within the general community).
• Services, including supervision and oversight, must be provided in such a manner as to assure the health, safety and welfare of the recipients.
• Services must provide opportunity for training and support to reduce the recipients’ dependence and to provide an improved quality of life.
• Services must be provided in a manner fully respectful of the individual worth and dignity of each recipient and of their desires and preferences.
• Persons with ID/DD may appeal decisions affecting them in a formal social services hearing before an independent hearing officer.

First Planning

• Living expenses (housing, food, personal needs) are generally funded by monthly federal Supplemental Security Income (SSI) allotments to your son or daughter, as well as any state supplemental allotments and personal income from work and/or family.
• Residential services are generally paid for by Medicaid (a state-federal program) funds, but some persons receive services wholly funded by state and/or county dollars. Service funds may not be used to pay living expenses.
• A single agency may provide both room and board and specialized services for an individual, but this is unnecessary and, increasingly, separation of a person’s living arrangements and the specialized services they receive is seen as desirable (e.g., it becomes possible to change the service provider without having to move from the residence).

Where People Live

congregate care residences, foster care/host family residences,their own homes.

• Almost two-thirds lived in congregate care residences in which a number of people with ID/DD lived, residences that were owned or rented and managed by the residential services provider.
• Nearly one-tenth lived in foster care/host family residences, where one or more persons with ID/DD lived with a family not their own, with additional services provided by an outside agency or, in some cases, by the family members.
• More than one-fourth lived in their own homes, which they or their family owned or rented and managed. They may have chosen to live alone or with others. They may have chosen their service provider(s).

In the past, with the nearly total reliance on congregate care settings, it was common practice to place people with ID/DD in existing residential settings to “fill the beds.” In the early 1980s, with the advent of the Medicaid Home and Community Based waiver, that practice became outdated and ill-advised. It then became possible to provide specialized services to persons with ID/DD in settings of their own choosing. Thus, deciding on a living arrangement first and then arranging necessary services to be brought into that living arrangement is a logical and far more desirable approach than placement simply to fill an empty bed. This does not mean, of course, that there are no limitations to choice. Afford-ability, availability, and eligibility are all real-life factors that must be considered. However, for an increasing number of families and individuals, housing chosen and controlled by the residents, with services selected and managed by the recipients, are worthy goals and realistic options.

Selecting a Residence

• Does your son or daughter want to live here?
• Can your son or daughter afford to live here?
• Do the other residents, if any, seem compatible with your son or daughter and he or she with them?
• Does the residence seem safe (e.g., door and window locks, fire extinguishers and smoke detectors, on-site building manager)?
• Does the neighborhood seem safe (e.g., traffic, crime, street lighting, general state of the area, natural hazards)?
• Is the location convenient to family and friends, employment or other day activities, shopping, places of worship, social and recreational activities, health care, and public transportation?
• Is the service provider also the building manager?
• Who owns the building?
• What rent/lease arrangements are required for your son/daughter?
• What things, if any, bother you about the residence?
• What are the positive factors about this residence?

Finally...

Rarely, if ever, can a parent assume that the essential contacts with adult service programs will be made during the transition process from high school to adult life without the active involvement of the parents. Informed assertiveness on your part is significantly more likely to achieve the desired result as you seek to help your son or daughter find a home in the community with services they need and want.