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Tuesday, June 14, 2011

Autism and Community Living

Michelle Diament reports at Disability Scoop:
As the public comment period draws to a close on a federal proposal detailing what qualifies as community-based housing for people with disabilities, the issue is sparking controversy.

The proposal from the Centers for Medicare and Medicaid Services was first announced in April and is open for comment through Tuesday.

Under the plan, residences that include “regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community” would be excluded from Medicaid home and community-based services waivers.
What’s more, qualifying homes could not be designed exclusively for people with disabilities.
Federal officials say they recommended the rules update after hearing about situations where new housing dubbed “community-based” was being built on the site of existing institutions.

However, some parents and disability advocates are criticizing the changes saying that they would limit options for adults with disabilities who may desire to reside near those like themselves.

All can agree that the atrocities of institutionalization must never be repeated, but the NY Times study in March 2011 exposed institutional-like abuses, not done in a large congregate care facilities, but hidden under our noses in urban and suburban group homes with less than 6 residents. One cannot even begin to imagine “community” in the midst of physical, spiritual, and financial abuse. With the advances in affordable security technology, education on self-determination, and person-centered philosophies, the fact that this kind of abuse still occurs is a slap in the face of humanity. If the CMS seriously desires to set standards and expectations of service providers, major initiatives of accountability, continuing education, and incentives of Direct Care Providers are needed!

Thus, the definition of “community” should not in any way be tied to physical size, number of residents, or geographic access to public amenities in unrealistic hopes to avoid institutional-like abuses. Community is synonymous with relationships, and relationships are found between the hearts of those who live, work, and play together. If the CMS desires to identify home and community-based settings, they must evaluate people, not places.

Gene Bensinger reflects on the proposed change here.

The Autistic Self-Advocacy Network says:

We appreciate this opportunity to provide comment on CMS’ proposed rulemaking providing for minimum standards for HCBS settings. The proposed rule would require that HCBS settings must be integrated in the community, must not be located in a building that is also a publicly or privately operated facility that provides institutional treatment or custodial care, must not be located on the grounds of, or adjacent to, a public institution, and must not be a housing complex designed expressly around an individual’s specific diagnosis or disability. We strongly support these protections. HCBS funds are limited and designed to serve specific purposes, not to be available to any and all settings which operate under the name “community”. By putting in place minimum standards to ensure that Home and Community Based Service are delivered in the community, CMS will be taking an important step towards protecting the civil rights of Americans with Disabilities and in securing the integrity of the Medicaid program. This rule will ensure that HCBS funds are not spent in settings which are congregate in nature or have the characteristics of an institution. We believe that it is imperative that CMS follow through on its proposed rulemaking.

Contrary to concerns raised that such a measure will limit choice, we believe that these minimum standards will enhance choice for people with disabilities and family members. HCBS funds represent one of several funding streams for long term services and supports. Institutional settings possess their own funding streams, and the corruption of HCBS funds for institution-like settings restrict the choices available to individuals and families by forcing a choice between two institutional settings. By putting in place minimum standards, we anticipate this rule will serve as the impetuous to a wave of innovation for supportive housing arrangements that give people both immediate, permanent housing in their own apartments or homes and access to voluntary, supportive HCBS services designed by the individual and provider to ensure success. By ending a state of affairs in which both institutional and HCBS funding streams fund settings which have the qualities of an institution, choice will only be enhanced for individuals with disabilities and family members.