WHY CONGREGATE CARE SETTINGS AND GROUP HOMES ARE CONCERNING
As existing housing models prove insufficient in providing residents with the health outcomes, safety, dignity, and autonomy they deserve, housing options must evolve. As evidenced by scientific research and as witnessed during the era of COVID and other natural disasters, studies display how congregate settings repeatedly fail those of us with developmental disabilities. WE MUST BROADEN OUR UNDERSTANDING OF THE LEAST RESTRICTIVE ENVIRONMENT. CHInyc is at the forefront of this movement.
Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy - New York Times Children with developmental disabilities were held under brutal conditions at a notorious New York facility. Decades later, they still face abuse and neglect.
Group Home Beneficiaries Are at Risk of Serious Harm - Office of Inspector General US Department of Health and Human Services
OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries at risk of serious harm.
These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.
The outcomes of individualized housing for people with disability and complex needs: a scoping review
Disability and Rehabilitation Volume 44, 2022 - Issue 7 Stacey Oliver, Emily Z. Gosden-Kaye, Dianne Winkler & Jacinta M. Douglas
“Since the welcomed closure of institutions, group homes have become a dominant form of housing and support for adults with disability [Citation15,Citation16]. Although group homes aim to resemble suburban homes, in this model people with disability are often treated as service users or recipients of care who live according to staff routines, rosters and priorities [Citation17]. Thus, similar to institutional care environments, group homes maintain large power imbalances between staff and residents, and service centred terminology is typically used to describe them [Citation17]. Concerns about group homes have been raised due to the limited choice available to residents regarding with whom and where they live, as well as inadequate engagement and participation outcomes [Citation18–20]. Research findings also suggest people living in group homes are vulnerable to abuse and neglect [Citation21–25]. In recognition of the potential negative outcomes, international trends in living arrangements for people with disabilities are now moving away from group homes and towards more individualized housing options which aim to prioritise principles of self-determination and community inclusion [10; Article 19].”
COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State
Disability and Health Journal Volume 13, Issue 4, October 2020, 100969 - Scott D. Landes PhD, Margaret A. Turk MD, Margaret K. Formica MSPH, PhD, Katherine E. McDonald PhD,, J. Dalton Stevens MA
People with IDD living in residential group homes were at greater risk of severe COVID-19 outcomes: case rates – 7,841 per 100,000 for people with IDD compared to 1,910 for New York State; case-fatality – 15.0% for people with IDD compared to 7.9% for New York State; and mortality rate – 1,175 per 100,000 for people with IDD compared to 151 per 100,000 for New York State. Differences in cases and mortality rate were confirmed across regions of the state, but case-fatality rate was only higher for people with IDD in and around the New York City region.
MORE TROUBLING REPORTS
In State Care, 1200 deaths and Few Answers NY Times
At State Run Homes, Abuse and Impunity NY Times
How Troubled State Group Homes for Disabled New Yorkers Operate for Years After Early Alerts NYC News Service
What We Know About Homelessness and Intellectual Disability Psychology Today - People with intellectual disabilities are more likely to become homeless at an older age due to the breakdown of a relationship or the death of a primary caregiver.
RESEARCH INDICATES NEED
“People with intellectual disabilities are more likely to become homeless at an older age due to the breakdown of a relationship or the death of a primary caregiver.”
- Psychology Today
INTEGRATED MICRO COMMUNITIES MAKE SENSE
Report by Autism Housing Network - Intentional communities are a sustainable housing option in a time of great need that fosters interdependent, integrated relationships.
There is an urgent need for the development of sustainable housing and individualized supports in advancing more person-centered options. Fortunately, the law, including the new Medicaid Home and Community-Based Services (HCBS) regulations, supports the continuation and expansion of a unique housing model that leverages public-private partnerships and provides real community to residents. Called “intentional communities,” this movement is rapidly growing and seen as one solution to the present housing crisis.
The World Health Organization (WHO) has defined quality of life as an "individual's perception of their position in life in the context of the culture and value systems in which they live." WHO further explained quality of life is a "broad ranging concept affected in a complex way by a person's physical health, psychological state, level of independence, social relationships, personal beliefs, and their relationship to salient features of their environment." In light of this definition, the study results offer the opportunity to broaden the definition of "least restrictive environment" for individuals with disabilities, and for those who influence their quality of life. Least restrictive environment must not be defined as where a person receives services or engages in life experiences; it must be about the positive and meaningful outcomes that come from their life experiences. The planned community model is not more restrictive by design. From the study results, the planned community experience cultivates key quality of life outcomes for individuals with disabilities including: A sense of community contributing and having sense of purpose in day-to-day life experiences, equality, discovery
The study results, including the Behavior Conditioning Model and the resulting Pathfinder Village Community Model, can serve as a comparative guide for further research to assess the positive influences and life outcomes for individuals with disabilities that are supported in other types of residential settings (community based living, supportive living, group homes, etc.).
The Importance of Community Integration for People with Disabilities - United Disabilities Services
Around 61 million people (nearly one in four) people in the United States are living with some sort of disability. But people with disabilities are often excluded from social relationships, community participation, leisure activities, and employment. Community integration for people with disabilities seeks to remedy these disconnects by creating inclusive, diverse societies.
Psychology Today - studies from the Bronfenbrenner Center at Cornell Universty found that it may be possible to prevent people with intellectual disabilities from becoming homeless by paying special attention to their needs after the death of a caregiver or loved one. Offering coordinated health care and social services at this major turning point is a particularly powerful way to keep people with intellectual disabilities in stable housing.
CHInyc recognizes that housing stability is not a luxury and that people living with cognitive disabilities are significantly more vulnerable to poor health outcomes throughout their lifetimes.
Providing stable housing in NYC, in an inclusive, safe, disability forward environment provides opportunity and a higher quality of life for all residents.