Centers for Medicare & Medicaid Services
Dept of Health and Human Services
Attention: CMS—229—P
PO Box 8016
Baltimore, MD 21244-1850
Re: CMS—22296-P
Comments from the Autistic Self Advocacy Network on Proposed Rulemaking on Home and Community Based Services
To Whom It May Concern:
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.
Additionally, we have several recommendations on how to strengthen the proposed rulemaking further to ensure the integrity of the Medicaid program’s HCBS funding streams. These recommendations were not developed in a vacuum. The Autistic Self Advocacy Network worked in collaboration with two other national self-advocacy organizations, Self-Advocates Becoming Empowered and the National Youth Leadership Network, to produce a joint report (attached) entitled “Keeping the Promise: Self-Advocates Defining the Meaning of Community Living” laying out what is and is not community living. The report was the result of a full-day summit of national leaders in the self-advocacy movement representing tens of thousands of people with intellectual and developmental disabilities across the country. Additionally, dozens of people with intellectual and developmental disabilities, most of whom were receiving Medicaid-funded Long Term Services and Supports, were interviewed as part of the development of the report. We engaged both through our summit and through our interview team and interviewees a wide array of different backgrounds, experiences and identities reflective of the broad diversity of our great nation. Our participants came from across the country and from every age group. They differed not only in the types of disabilities and accommodations, but also in their languages, their incomes, their religious beliefs, their sexual orientations, their mode of communication, their races and ethnicities and every other manner of diversity. Some came from big cities, others small towns and rural areas. Some talked about having spent time in institutions – others had grown up in the community. Some have spent many years of their adult life in a sheltered workshop or day program – others are competitively employed. While we know that no effort can capture every aspect and facet of our wide and diverse community, we believe that this report and the process that led to it was broadly inclusive and captured many voices typically left out of these discussions. We assert the need to leave no voice behind and are proud of the diverse community this report represents.
We recommend that CMS closely examine the attached Keeping the Promise report for further information on what should constitute both the letter and the spirit of life in the community. Our specific recommendations in response to the proposed rulemaking follow below:
1. The rule should clarify that the funds may not be expended on services that are delivered in segregated settings, including non-residential settings. Thus, the waiver should not fund services in sheltered workshops, adult day care, or other congregate settings created solely for people with disabilities. To quote the Keeping the Promise report, “We lose an important aspect of community life if we spend our time only around people with disabilities, in day habilitation centers, and are not able to be included in our broader communities…We must have opportunities to work in jobs as part of the general work force, among people who do not have disabilities. Opportunities for earning wages and benefits should be the same as everyone else. CMS funding should be used for supported employment and not be used for sheltered workshops or settings paying sub-minimum wage for people with disabilities. CMS community funding should not be used for any segregated settings, including day habilitation centers. Anything that segregates us from our communities is not community.”
2. CMS should clarify that HCBS funds may not be used for congregate care settings, except where small groups of persons with disabilities choose to live together and where the setting does not have the qualities of an institution. The rule should also forbid states from using HCBS waiver funds to provide services to individuals living in a setting in which they are required to receive and participate in services as a condition of continued tenancy. CMS should review state applications to ensure that these standards are met.
3. The NPRM lists the qualities of an institution (regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit an individual’s ability to engage freely in the community). This list is extremely important. It defines settings that do not meet the definition of “community based” and should be included in the regulation itself, in order to provide states with a clear understanding of settings that are institutional and ensure compliance with the rule. We propose the following items, drawn from the Keeping the Promise Report, that we believe should be included in a list of characteristics of an institution:
a. Includes only people with disabilities;
b. Includes more than 3 people who have not chosen to live together;
c. Individuals cannot lock door to their bedroom or bathroom;
d. Regimented meal and sleep times;
e. Limitations on visitors, including who may visit and when they may do so;
f. Restrictions on when an individual can enter or exit their home;
g. Restrictions or pressure aimed at controlling an individual’s religious practices, beliefs or expression;
h. Inability to select or remove support staff at the individual’s request;
i. Restrictions on an individual’s sexual preferences or activity;
j. Requirements that individuals must change housing if they wish to alter the personnel providing their support or the nature of their support;
k. Restrictions on access to the telephone or internet;
l. Restrictions on access to broader community life and activities;
4. The regulation should specify that a “housing complex designed expressly around an individual’s diagnosis or disability” includes complexes that serve individuals with different diagnoses or disabilities and not just complexes that serve individuals with a particular diagnosis or disability.
5. The regulation should specify that an HCBS setting must not be located on the grounds of, or immediately adjacent to, a private as well as a public institution.
6. CMS should consider providing a non-exhaustive list of characteristics of an HCBS setting. Several possible characteristics to include, but by no means all, are provided below:
a. If individuals share a living arrangement, they have chosen to do so and with whom they will be doing so;
b. Individuals have lockable access to and egress from their own living area;
c. Access to the greater community is easily facilitated based on the individual’s needs and preferences;
d. Individuals have the right to hire and fire their own staff;
e. Individuals may choose what, when and where they eat, drink and engage in social activities;
f. Individuals have access to affordable, accessible transportation to participate in the broader community, including the attendance of places of worship.