The Autistic Self Advocacy Network applauds the Centers for Medicare and Medicaid Services’ decision to move forward on regulations defining the scope of settings acceptable under the 1915i state plan option. We concur with CMS that this definition, once final, should be applied under other HCBS funding streams, such as the 1915c waiver program. At the same time, we believe that the shift in requirements from CMS’ April 15, 2011 Notice of Proposed Rulemaking (CMS-2296-P) to the current NPRM (CMS-2249-P2) would allow states to utilize HCBS funds to support settings which are clearly not home and community-based. We urge CMS to consider the following recommendations to bring the proposed rule in compliance with the spirit, purpose and intent of the HCBS program.
Requirements of Provider-owned and controlled residential settings
We believe that housing and service provision should be de-linked entirely and would find it preferable to see a regulation that precluded provider-owned or controlled residential settings from receiving HCBS funds at all under the HCBS program. However, we acknowledge that compliance with such a provision would require more rapid evolution of the service provision system than CMS is willing to promote with this regulation. As a result, we believe it is critical that CMS incorporate as strong as possible a list of requirements on provider-owned and controlled residential settings.
We support CMS’s proposed list of qualities of home and community-based settings in Section 441.656(a)(1) (for state plan home and community-based services) and Section 441.530(a)(1) (for attendant services and supports in home and community-based settings). These conditions are critical to ensuring that provider-controlled settings designated as home and community-based operate in a way that promotes choice, autonomy and independence.
However, we have two significant concerns.
Housing Should Not Be Conditioned Upon Acceptance of Services.
We believe that the list of “additional conditions” is not complete, however, without the addition of a condition discussed by CMS at pages 69-70 of the preamble: that receipt of any particular service or support cannot be a condition for access to housing. CMS discusses two possible interpretations of this requirement. We think the appropriate interpretation is that, for a setting to be community-based, the owner or operator of the setting cannot evict a person because he or she refused to accept a particular service.
This requirement is often referred to as “Housing First,” and has received widespread acceptance as a method that not only promotes independence, choice and responsibility, but also results in significantly better outcomes than programs that make housing contingent on compliance with treatment. See, e.g., Sam Tsemberis et al, Housing First, Consumer Choice, and Harm Reduction for Homeless Individuals with a Dual Diagnosis (“housing first” model demonstrated far better outcomes than traditional housing models), National Council on Disability, Inclusive Livable Communities for People with Psychiatric Disabilities (Mar. 17, 2008), at 24-25 (same).
Experience has consistently shown that individuals with disabilities do better when provided with the opportunity to make their own choices. By contrast, requiring people with disabilities to comply with treatment on penalty of losing their housing promotes learned helplessness, dependence on others, and lack of self-worth. Worse, it leaves many individuals homeless because they cannot or choose not to follow a particular treatment regimen; as a result, often the individuals most in need of help are least able to access it.
“Housing first” models have promoted successful outcomes not only for people with psychiatric disabilities but for people with substance abuse issues or dual diagnoses, as well as for people who are homeless. Tsemberis et al, Housing First, Consumer Choice, and Harm Reduction for Homeless Individuals with a Dual Diagnosis.
We believe that a requirement that housing not be conditioned on acceptance of a particular form of service provision is a crucial component of the HCBS regulation for all people with disabilities. The absence of a right to refuse service provision without losing housing would mean that an individual would lose all meaningful choice, control and autonomy in the person-centered planning process with their service-provider. Effectively, it would allow service providers to utilize HCBS funds for settings that are fundamentally institutional in nature and provide individuals with disabilities with no recourse other than to move to new housing. Non-disabled individuals do not need to change housing arrangements in order to make changes to a housekeeper, child care provider or other person providing them with service provision. People with disabilities should possess the same right.
We believe that individuals with intellectual and developmental disabilities are particularly vulnerable to being placed in settings that are institutional in nature without this critical protection. As a result, if CMS determines that such a requirement would be inappropriate due to the existence of programs that tie housing to substance abuse treatment, we would urge CMS to craft a narrow exception allowing the requirement to be waived only for substance abuse treatment services, maintaining it for the broader scope of service provision on the grounds that such treatment services are distinct in character from other forms of service provision focused on activities of daily living and instrumental activities of daily living.. However, we believe that the optimal outcome would be for CMS to institute this requirement across the board for all types of people with disabilities.
Departures from the “Additional Conditions” Should only be Permitted with respect to Access to Food and Locked Doors
We have grave concerns about the proposed language stating that provider-owned or controlled residential settings do not have to meet the listed qualities of a home and community-based setting as long as a departure from these qualities is “supported by a specific assessed need and documented in a person-centered service plan” (441.656(a)(1)(vi), 441.530(a)(1)(vi)).
In far too many instances, we fear, this exception will swallow the rule. Many if not most providers that assert programmatic justifications for departing from the “additional conditions” will continue to do so. We fear that in practice the proposed rule would permit service providers to impose numerous restrictions on individuals’ autonomy and choice for their own convenience in the name of effective service provision.
Moreover, service plans that limit individual choice are inconsistent with principles of person-centered planning upon which the proposed regulations are founded. Maximizing independence and individual choice is key not only to integration but also to effective services.
Departing from the “additional conditions” for provider-owned or controlled settings is rarely required to ensure that a person receives effective services. We agree that such departures might be justified in rare circumstances — for example, restricting access to food where unlimited access to food could endanger a person’s life due to his or her disability, or eliminating lockable doors where locks would endanger the safety of a person with dementia. However, it is hard to see how some of the limitations that would be permitted by the proposed rule are related to safety or other legitimate service needs — for example, requiring a person to share a unit against his will or eliminating a person’s freedom to decorate his room. Modifying these types of requirements would clearly push a setting across the line into an institution.
Moreover, allowing departures from key elements of home and community-based settings would be inconsistent with the common understanding of people with and without disabilities about what is a “home” and what it means to be part of “the community.” In a 2003 report, the National Council on Disability reported the results of interviews with individuals with disabilities and others concerning their understanding of “the most integrated setting.” The Council noted that the most common response was “a place where the person exercises choice and control.” (“What people themselves want!… Self determination is essential. People decide for themselves what they want and need.”) The second most common response was “A home of one’s own shared with persons whom one has chosen to live with,” or where one lives alone. The third most common response was that home living for people with disabilities “should be like home living for other community members.”
Adults without disabilities would not consider a “home” or living in a “community” to be characterized by an absence of choice over with whom they live, when to have visitors, whether and how to decorate or furnish their living space, whether to lock doors, and when and what to eat. Such qualities would, in most people’s minds, more resemble an institution than a “home” or “community” living.
Allowing departures could well have the effect of “normalizing” the elimination of choice and independence, even if CMS were to impose requirements that the restrictions be directly proportionate to a specific safety need and be reviewed for effectiveness and continuing need. We would suggest that CMS not allow such modifications, except with regards to access to food and lockable doors and that even exceptions to those two requirements be tied to a specific and documented safety need and reviewed for effectiveness and continued need.
- CMS should incorporate within the Final Rule a requirement that receipt of any particular service or support cannot be a condition for living in a unit.
- CMS should require that any modification to the conditions placed upon provider-controlled or owned residential settings be supported by a specific assessed need documented in the person’s person centered plan and should limit the acceptable scope of modifications to the conditions placed upon provider-controlled or owned residential settings to access to food and lockable doors, as the other requirements do not have an impact on health and safety and placing limitations upon them would be fundamentally incompatible with the spirit, purpose and intent of the HCBS program.
Settings that are institutional in nature or have the qualities of an institution
Disability-Specific Settings and Settings on the Grounds of an Institution Should Never be Considered HCBS
CMS proposes to exercise a “rebuttable presumption” that a setting is not Home and Community-Based, requiring CMS to engage in heightened scrutiny, for settings that are, “located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex.” This represents a significant step back from CMS’ absolute requirement in its April 2011 NPRM that HCBS funds cannot be used for settings that meet those criteria.
We recommend that CMS re-establish an absolute prohibition against utilizing HCBS funds for settings that have the characteristics listed above. In so far as CMS is concerned that assisted living facilities for elderly individuals will not be allowed to be funded under HCBS waivers through such a definition, other options exist to address these concerns. For example, CMS could create a “safe harbor” provision for assisted living facilities, as they did in the April 2011 NPRM. Alternatively, CMS should consider splitting the non-elderly disabled and elderly populations, utilizing the definition of older individual established in the Older Americans Act (an individual 60 years of age or older), thereby allowing such settings to be utilized for the aging community but not the non-elderly disabled population.
Settings that have the characteristics of an institution should not be considered home and community-based
Pages 70-71 of the preamble identify particular characteristics that would render a setting not home and community-based. CMS should revise Sections 441.656(a)(2)(iv) and 441.530(a)(2)(iv) to clarify that settings are not home and community-based if they: “are isolated from the larger community, do not allow individuals to choose whether or with whom they share a room, limit individuals’ freedom of choice on daily living experiences such as meals, visitors, and activities, or limit individuals’ opportunities to pursue community activities.” It is hard to imagine that such settings could ever be home and community-based. If CMS declines to revise Sections 441.656(a)(2)(iv) and 441.530(a)(2)(iv) in this way, it should say in Sections 441.656(a)(2)(v) and 441.530(a)(2)(v) that such characteristics give rise to a rebuttable presumption that the setting is not home and community-based.
Other Considerations in defining settings incompatible with HCBS
Additionally, we think the proposed regulation too narrowly identifies settings that are not home and community-based.
Section 441.530(a)(2)(iv) excludes from the definition of home and community-based settings a “hospital providing long-term care services.” We urge you to revise this provision to exclude “a hospital” without the qualification that it must provide long-term care services. A hospital providing acute care or other services besides “long-term care services” is no more home or community-based than a hospital that provides long-term care services. In fact, the parallel provision in Section 441.656(a)(2)(iv) excludes any hospital, without the qualifier in Section 441.530(a)(2)(iv).
Board and Care Homes
In our view, board and care homes for people with disabilities should be identified as settings that are not home and community-based. Section 441.530(a)(2)(iii) appropriately excludes from the definition of home and community-based settings “an intermediate care facility for the mentally retarded.” Like ICF/MRs, including small ICF/MRs, board and care homes should not be considered home and community-based because of the institutional manner in which they operate.
As SAMHSA itself has noted, board and care homes are institutional by nature. See, e.g., U.S. Dep’t of Health & Human Services, Substance Abuse and Mental Health Administration, Transforming Housing for People with Psychiatric Disabilities, at 2 (vast majority of residents in board and care homes, including small homes, live in institutional rather than homelike environments, have little or no interaction with people without disabilities, and lack meaningful opportunities for community involvement). A wide array of stakeholders — including state mental health officials, federal government officials, service providers and other professionals, family members, disability and health advocates, consultants, and a bank development corporation – who contributed to SAMHSA’s report issued a statement to the same effect:
We firmly believe that board and care homes serving people with psychiatric disabilities—as currently configured—are generally not consistent with the ADA and the Olmstead mandate, and that the overreliance on such homes undermines community integration and the transformation of the public mental health system called for by the President’s New Freedom Commission on Mental Health.
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Every person with a disability deserves a range of housing choices and to live in a home of his or her own. That includes the full rights of tenancy, including a lease, a key, privacy, and the choice of roommate, where relevant.
We believe that state and federal government should take urgent action to ensure that public funds are no longer expended to support segregating living arrangements such as board and care homes.
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- CMS should shift from a rebuttable presumption of non-compliance with the HCBS program “for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex” to an unequivocal requirement that said settings are not acceptable under HCBS funding authorities. CMS should consider splitting the non-elderly disabled and elderly populations, utilizing the definition of older individual established in the Older Americans Act (an individual 60 years of age or older), thereby allowing such settings to be utilized for the aging community (i.e: assisted living facilities) but not the non-elderly disabled population.
- Section 441.530(a)(2)(iv) should be revised to exclude all hospitals from the definition of home and community-based settings, consistent with Section 441.656(a)(2)(iv).
- Sections 441.656(a)(2) and 441.530(a)(2) should identify “board and care homes for individuals with disabilities” as among the settings that are not home and community-based.
- CMS should delete the requirement that a setting must be identified in a person’s service plan (441.656(a)(1)(ii), 441.530(a)(1)(ii)) to be considered home and community-based. The level of specificity with which a particular setting must be identified in a service plan is not clear, and in any event, applied to the 1915(i) option, the requirements could inappropriately prevent individuals from receiving services when their desired living setting is not specifically identified in a service plan.
- CMS should say that the setting must have been “selected by the individual following a meaningful opportunity to choose from among alternatives including the setting that is the most integrated setting appropriate for the individual.” See (441.656(a)(1)(ii), 441.530(a)(1)(ii)) (proposed regulation says “selected by the individual from all available alternatives”).
- CMS should clarify that all settings in which the individual does not have a regular lease or full ownership rights should be considered provider-controlled. This would include adult foster care settings.
- CMS should clarify that all settings which require individuals to automatically transfer all or the majority of their income to their service provider or to name their providers as their representative payees for the purpose of SSI, SSDI or other disability payments are not Home and Community Based for the purposes of the Medicaid program.
 94 Am. J. Pub. Health 651 (2003), http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448313.
 See, e.g., National Council on Disability, Inclusive Livable Communities for People with Psychiatric Disabilities, supra, at 24-25 (better treatment outcomes for “housing first” community mental health programs where residents decide whether and which services to accept than for traditional programs where individuals are closely supervised at the outset and gradually moved along a continuum with increasing independence).
 National Council on Disability, Olmstead: Reclaiming Institutionalized Lives (Sept. 29, 2003), at 9, http://www.ncd.gov/publications/2003/09292003-1.