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ASAN-Kentucky Comment on New HCBS Waiver Regulations

by Kristen Guin, ASAN-Kentucky

I am writing on behalf of the Autistic Self Advocacy Network regarding the recent proposed new administrative regulations (907 KAR 12:010) for Kentucky’s Supports for Community Living 1915(c) Medicaid waiver.

We are pleased to support the following segment on employment for individuals with disabilities.

Section 4(9)(b)(4)(e): Shall not be reimbursable if they are for the primary purpose of producing goods or performing services in a segregated setting where the participant is earning less than the customary wage and level of benefits paid by an employer for the same or similar work performed by individuals without disabilities.

This part of the proposed regulations is in alignment with Centers for Medicare & Medicaid Services (CMS)’s September 2011 Informational Bulletin, which stressed that sheltered workshops, sometimes called pre-vocational services, are not an end unto themselves and should not be regarded as a final employment placement or goal for adults with disabilities. Per CMS’s own clarifications, we encourage rigorous implementation of their Informational Bulletin that clarifies core service definitions regarding employment supports within the 1915(c) waiver. The relevant language from the Information Bulletin states that “waiver funding is not available for the provision of vocational services delivered in facility based or sheltered work settings, where individuals are supervised for the primary purpose of producing goods or performing services.”

Recent research 2 on disability and employment indicates that individuals currently in supported employment who were previously placed in segregated settings such as sheltered workshops have higher support costs and receive lower wages than individuals with comparable disabilities who transitioned directly into supported employment. The research also indicates that those who have been in sheltered workshops have a lower rate of employment compared to people who have never been in a sheltered workshop placement.

We applaud the State for recognizing that sheltered employment is not the same as supported employment, and that individuals with disabilities should be provided with the appropriate supports to achieve fully inclusive and integrated employment in their own communities, with both disabled and non-disabled peers. It is important to ensure that service providers who seek to place adults with disabilities in sheltered workshops not be allowed access to waiver funds intended for community living supports, as the very purpose and nature of sheltered employment is directly contrary to the principles of community living.

Additionally, we urge the state to include further requirements in the new Level I Residential Supports category for provider-owned or controlled residential supports in the proposed regulations in order to prevent potential abuse or misuse of the regulations. This category should include the same requirements that CMS has recently proposed in their regulations defining home and community based services for the HCBS waiver (CMS-2249-P2). Those requirements are as follows:

In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modifications of the conditions (for example to address the safety needs of an individual with dementia) must be supported by a specific assessed need and documented in the person-centered service plan:

The unit or room is a specific physical place that can be owned, rented, or occupied under a legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that the tenants have under the landlord/tenant laws of the State, county, city, or other designated entity.

Each individual has privacy in their sleeping or living unit:
Units have lockable entrance doors, with appropriate staff having keys to doors;
Individuals share units only at the individual’s choice; and
Individuals have the freedom to furnish and decorate their sleeping or living units;

Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time;

Individuals are able to have visitors of their choosing at any time; and

The setting is physically accessible to the individual.

These requirements protect the inherent dignity and human rights of individuals with disabilities who have intensive support needs by ensuring that there is a legal framework for establishing the same rights and self-determination as adults without disabilities, especially in choosing how, when, and with whom to spend their own time. In order to live in fully inclusive and integrated communities, individuals with disabilities, especially those living in provider-owned or controlled housing units, need to be protected to the fullest extent of the law and its regulations. Without these legal protections, individuals with disabilities living in provider-owned or controlled housing can be subjected to legal harassment, unnecessary invasions of privacy, and institution-like regulations on their choices and self-determination. In addition to the requirements above, CMS also proposed to require that service-providers could not evict an individual with a disability from their current residence for refusing to accept any particular form of service or treatment. We strongly endorse this requirement and urge the Department to incorporate it within its regulations as well.

Individuals with disabilities should have access to housing options that allow them the same freedoms and range of choices as their peers without disabilities, regardless of the type and intensity of support services that they need. We believe that departures from these additional conditions should only be made with respect to access to food and locked doors. Access to food should be limited for individuals whose life may be endangered due to their disability if they have unlimited access to food, and lockable doors should be eliminated if locks would endanger the safety of a person with dementia. Outside of these specific exceptions, it is difficult to see how the remainder of the additional conditions are related to safety needs. Not limiting the scope of exceptions creates the potential for imposition of institution-like living arrangements for individuals whose goal ought to be community living.

We urge the Department to adopt these additional conditions in furtherance of the purpose of facilitating community living for people with intellectual and developmental disabilities in the State of Kentucky. These additional conditions affirm the practical aspects of community living by recognizing and prohibiting community living funding to housing arrangements that impose institution-like conditions on individuals with disabilities.

 

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 Centers for Medicare & Medicaid Services, Center for Medicaid, CHIP and Survey & Certification (2011, September 16). CMCS Informational Bulletin: Updates to the Section 1915(c) waiver instructions and technical guide regarding employment and employment-related services.

2 Cimera, R. E., Wehman, P., West, M., & Burgess, S. (2011, May); Cimera, R. E. (2011, March); Cimera, R. E. (2008)

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