People with I/DD face a housing crisis with many contributing factors, such as a serious lack of safe, affordable, accessible and integrated housing, and significant housing-related discrimination. Outmoded public policy and programs which unnecessarily segregate people with I/DD, as well as lack of coordination among funding systems, also pose major barriers.
Historically, families with a child with a disability had to either place their child in an institution, or manage without any supports or services at home. Institutions create an isolated, unnatural way of life that is inappropriate and unnecessary, while consuming a disproportionate share of limited public resources. As people with I/DD have left institutions or their family homes, they frequently have been placed in group homes, often larger than family-sized, typically owned or leased by provider agencies. People in those settings may have little control over where and with whom they live, the services they receive, or the routines of daily life.
The recognition that people with I/DD belong in the community has led to a growing demand for community-based housing. This demand is fueled by persons choosing to leave institutional settings, by young adults educated in inclusive schools, and by adults with I/DD who live with elderly parents.
However, people with I/DD are among the nation’s poorest citizens. For many, Social Security and Supplemental Security Income benefits, which are often far lower than typical rents, are their primary or sole source of income; beneficiaries are generally priced out of rental markets across the country.
Affordable housing programs are drastically underfunded, with long waiting lists. In addition, Medicaid, the principal source of funding for services and supports for people with I/DD, typically does not allow funds to be used for rent or other community-based housing-related costs.
These factors pose major barriers to community living, making it difficult for people to move from segregated facilities into the community, and putting many people with I/DD at risk of unnecessary institutionalization or homelessness.
People with I/DD have the right to live in safe, accessible, affordable housing in the community.
- People must have freedom, authority, and support to exercise control over their housing, including choice of where and with whom they live, privacy within their homes, access to flexible supports and services when and where they choose, choice in their daily routines and activities, freedom to come and go as they please, and housing that reflects their personal preferences and styles. Providers should honor individual choices and preferences.
- Housing should afford people with I/DD the opportunity to interact with people without disabilities to the fullest extent possible.
- The health and safety of people with I/DD must be safeguarded wherever they live, but should always be balanced with the right to take risks and exercise choice and control.
- To ensure that people with I/DD can make informed decisions about where and with whom they live, they and their families must be given understandable information about the benefits of living in the community, have the chance to visit or have other experiences in community settings, have opportunities to meet other people with disabilities who are living in the community, and have any questions or concerns addressed.
- All children and youth need a home with a family that provides an atmosphere of love, security, and safety.
- Adults with I/DD should receive the supports they need to transition out of the family home when they wish to do so.
- Housing for people with I/DD must be coordinated with home and community-based support systems, including transportation services, and should ensure access to other typical public resources.
- There must be adequate funding of services to support people to live in the community. Funding must be stable and not subject to arbitrary limits or cuts. People with I/DD must not be subjected to unnecessary institutionalization or removal from their homes and communities due to state budget cuts.
- Public policy should promote small, typical living situations for people with I/DD. Information about innovative housing models that promote independence should be widely disseminated.
- Housing for people with disabilities should be scattered within typical neighborhoods and communities, and should reflect the natural proportion of people with disabilities in the general population.
- Public funds must be shifted from restrictive institutional settings to community supports. Institutional settings and large congregate living arrangements are unnecessary and inappropriate for people with I/DD, regardless of type or severity of disability.
- Affordable housing options must be available to people with I/DD, including those with very low incomes. Affordable housing programs must be expanded and funded to eliminate long waiting lists. Public policies must ensure that people with I/DD receive their fair share of all local, state, and national housing resources.
- Universal design and visitability2 standards should be adopted for all new housing. New and significantly renovated multifamily housing should include fully accessible units in numbers that reflect the natural proportion of people with disabilities in the general population.
- People with I/DD have the right to be free from housing discrimination, and there must be robust education, outreach, and enforcement of that right. People with I/DD must have opportunities comparable to those of people without disabilities to rent or buy their own homes.
Joint Statement with the American Association on Intellectual and Developmental Disabilities (AAIDD).
1 “People with intellectual disability (ID)” refers to those with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18”, as defined by the American Association on Intellectual and Developmental Disabilities (AAIDD) Manual, Intellectual Disability: Definition, Classification, and Systems of Supports, and the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM IV), published by the American Psychiatric Association (APA). “People with developmental disabilities (DD)” refers to those with “a severe, chronic disability of an individual that- (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care. (II) Receptive and expressive language. (III) Learning. (IV) Mobility. (V) Self-direction. (VI) Capacity for independent living. (VII) Economic self-sufficiency; and (v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated,” as defined by the Developmental Disabilities Assistance and Bill of Rights Act 2000. In everyday language people with ID and/or DD are frequently referred to as people with cognitive, intellectual and/or developmental disabilities.
2 Universal design means buildings, products and environments that are inherently accessible to both people with and without disabilities. Visitability is a set of construction standards through which housing offers a few specific accessibility features making it possible for people with disabilities to visit friends, family and neighbors.