NYAPRS Note: The following comes from the Bazelon Center for Mental Health whose executive director Bob Bernstein told our Board last week that “more than two decades after the Americans with Disabilities Act was passed and more than one decade after Olmstead was decided in the Supreme Court, people with psychiatric disabilities have shamefully little that they can point to as evidence of real Community Integration. Within public mental health, there are abundant slogans concerning “Olmstead compliance,” “person-centeredness” and “recovery,” but overwhelmingly people with psychiatric disabilities remain on the social margins. The Board-staff discussion will reflect our justifiable (we think) discontent with incrementalism in achieving Community Integration, and the sad reality that too little seems to be happening outside the context of litigation.”
The Bazelon Center’s Vision of Community Integration
• The Bazelon Center’s view is that people with disabilities should have the opportunity to live the same kinds of lives as people without disabilities. This means not only being free from discrimination that keeps them out of the social mainstream, but also having access to the tools and supports that allow people with disabilities to live like ordinary Americans.
- We have developed a concise set of Key Principles that reflect our perspective on community integration (see below) and are seeking support from key disability groups and from federal agencies.
- We continue to give high priority to the community integration of people with serious mental illnesses.
- More than 20 years after the ADA was enacted and more than a decade after Olmstead was decided, most individuals with serious mental illnesses served by public programs remain far from the goal of integration in where they live and how they live their lives
- A very large number of people with serious mental illnesses live in settings that perpetuate dependency and segregation. These include facilities that have traditionally been regarded as institutions (e.g., psychiatric hospitals and nursing homes), and also settings such as group homes, adult homes (“IMDs”), and apartment buildings for people with disabilities.
- Unemployment among people with serious mental illness is the highest among disability groups (almost 80% unemployment, and that’s the pre-recession level)
- Established technologies-for example, supported housing and supported employment-make this vision feasible for virtually all people with mental illness. However, actual achievement of this goal is obstructed by a number of factors, among them:
- Static public systems that continue to invest in service approaches that were state-of-the-art decades ago;
- Resistance from some stakeholders; and
- The lack of information among consumers and their families about essential civil rights and the positive outcomes that can be achieved by meaningful community services and supports. (In some instances, providers with vested interests have capitalized on this, frightening them about the risks of community living, instead promoting the “safe” and “family-like” atmosphere of congregate settings.).
• The Bazelon Center has adopted an intentionally ambitious strategy relating to integration for people with serious mental illnesses
- We advocate that virtually all individuals could live in their own homes with flexible supports and that if the resources now invested in various institutional models and services were appropriately redirected, the goals of the ADA could be realized for virtually all people with serious mental illnesses.
- The Bazelon Center no longer advocates for outdated and segregating service models, such as group homes, day treatment programs, or even apartment buildings designated for people with disabilities. In keeping with the spirit of the Americans with Disabilities Act, our goal is to promote full and meaningful integration.
- Moving public systems to the point where real integration is the natural product of services requires a significant change in culture, in protocols for assessing individuals’ needs, and in incentives that shape on-the-ground decision making.
Bazelon Center staff have advocated with the Center for Medicare and Medicaid Services to adopt Medicaid rules for home and community based services that would prevent HCBS funds from being used to support congregate settings, with the possible exception of when an individual makes an informed choice to live in a congregate setting. The Bazelon Center has been seeking sign-ons from national groups to the following statement to affirm that position with CMS going forward.
Community Integration for People with Disabilities: Key Principles
- Individuals with disabilities should have the opportunity to live like people without disabilities. They should have the opportunity to be employed, have a place to call home, and be engaged in the community with family and friends.
- Individuals with disabilities should have control over their own day, including which job or educational or leisure activities they pursue.
- Individuals with disabilities should have control over where and how they live, including the opportunity to live in their own apartment or home. Living situations that require conformity to a collective schedule or that restrict personal activities limit the right to choose.
- Individuals with disabilities should have the opportunity to be employed in non-segregated, regular workplaces. Virtually all individuals with disabilities can be employed and earn the same wages as people without disabilities. When needed for such employment, they should have access to supported or customized employment. They should be afforded options other than sheltered work, day treatment, clubhouses, and other segregated programs.
- Virtually all individuals with disabilities can live in their own home with supports. Like people without disabilities, they should get to decide where they live, with whom they live, when and what they eat, who visits and when, etc.
- To this end, individuals with disabilities should have access to housing other than group homes, other congregate arrangements, and multi-unit buildings or complexes that are primarily for people with disabilities. They should have access to “scattered site” housing, with ownership or control of a lease. Housing should not be conditioned on compliance with treatment or with a service plan.
- Individuals with disabilities should have the opportunity to make informed choices. They must have full and accurate information about their options, including what services and financial support are available in integrated settings. They should have the opportunity to visit integrated settings and talk to individuals with similar disabilities working and living in integrated settings. Their concerns about integrated settings should be explored and addressed.
- Government funding for services should support implementation of these principles. Currently, public funding has a bias toward institutionalization, forcing individuals to overcome myriad barriers if they wish to age in place and remain in their communities.