Clarification of the HCBS rule from CMS

In Memory of Lewis, the garden store cat

The federal Centers for Medicare and Medicaid Services (CMS) issued a rule in January 2014 that attempts to define the settings in which people with developmental and other disabilities can receive Home and Community-Based Services (HCBS). HCBS are paid for with Medicaid funds under Medicaid waiver and state plan programs. In Michigan, this rule applies to Medicaid Waivers that include the Habilitation Supports Waiver (HSW) for people with DD and the Children’s Waiver Program (CWP). The more generally available CMS-approved state plan services and other programs for people who are elderly or have physical or mental disabilities are also covered by the rule.

According to a Fact Sheet on the HCB settings rule, “the changes will …maximize the opportunities for participants in HCBS programs to have access to the benefits of community living and to receive services in the most integrated setting and will effectuate the law’s intention for Medicaid HCBS to provide alternatives to services provided in institutions.”

People with disabilities and their families should be forewarned that much of what they hear about the rule may not be what the rule actually says or how the CMS interprets it. The rule is confusing, however, and lends itself to the kind of controversy it has been generating. It needs fixing, but for now this is what we have to live with.
 
Some alarming statements have been made about what the rule means for people living and receiving services in congregate settings where more than a  few people with disabilities are served together. The rule does not define the term “congregate” or "community" nor does it give a magic number at which point CMS believes that people with disabilities associating with one another are in danger of losing their civil rights. How the rule is being interpreted varies widely. 

At a Waiver Conference sponsored by the Michigan Association of Community Health Boards (MACMHB) in November 2014, the person presiding over a session on the detailed requirements of the new rule gave her opinion that by the time the rule is fully implemented in March 2019, congregate settings will no longer be funded by Medicaid because they will not meet the requirement to integrate people with disabilities into the community. The federal CMS interpretation of its own rule is different from that given at the Waiver Conference.

Most people with disabilities and their families welcome changes that call for better enforcement of rights that are already in place and improvements in conditions that make life better for people with disabilities, but the new rule could cause unnecessary disruption and hardship, depending on how it is interpreted. Although the rule purports to be the fulfillment of the Americans with Disabilities Act and its interpretation by the Supreme Court in the Olmstead decision, that is a dubious claim. 

The HCBS rule is being interpreted by many disability advocates as a requirement for states to impose on people with disabilities and their families the ideology of Full Inclusion, the idea that everyone can and should be fully integrated into the community (whatever that means), regardless of the severity or nature of a person’s disability; anything separate or different, no matter how necessary it is to the comfort and survival of the person with a disability, is considered to be inherently isolating and segregating.  The adoption of this interpretation of the rule by the state, could limit individual choice and diminish the quality of services available for a population of people with widely diverse needs.

There are some things in the rule and the CMS interpretation that can mitigate the potential harm to people in programs under the most scrutiny, including programs or residential care provided in congregate settings. In this document that includes “Questions and Answers Regarding Home and Community-Based Settings”, the CMS sets out some of the principles in implementing the HCBS rule. READ THE DOCUMENT. I have selected some of the things I think are important to know, but you may pick up on other parts that are more important to you:


Public Notice and Comments

The first part of this document deals with Public Notice and Comments. This link to HCBSAdvocacy.org provides information on due dates for comments, state documents, and other information. A few of the links at this Website are incorrect or don’t work, but overall, it seems to be the best source of information and the easiest Website to use. Another source is the Michigan Department of Community Health Website.

Home and Community-Based (HCB) Settings - General

Q. #3: Does the HCB setting requirement apply to an enrollee’s private home or the relative’s home in which an enrollee resides?
A. The regulations allow states to presume the enrollee’s private home or the relative’s home in which the enrollee resides meet the requirements of HCB settings. … While a private home may afford the individual a home-like setting, the person-centered plan and provision of appropriate services that support access to the greater community are critical components to ensure community integration, especially for an individual with limited social skills.

Q.#4: Is there a minimum number of residential settings that must be offered to an individual?
A. …an individual must be able to select among setting options that include non-disability-specific settings and an option for a private unit in a residential setting. The individual’s person-centered plan should document options …considered…based on the individual’s needs, preferences, and for residential settings, resources available for room and board.

Q. #6: What is the meaning of “non-disability-specific settings”? does this requirement mean that the options must include settings in which other individuals with similar disabilities do not reside or receive services and support?
A. “Non-disability-specific” …means that among the options available, the individual must have the option to select a setting that is not limited to people with the same or similar types of disabilities….People may receive services with other people who have either the same or similar disabilities, but must have the option to be served in a setting that is not exclusive to people with the same or similar disabilities.

Q. #7: What is the meaning of a “private unit in a residential setting?” Does this mean that an individual must be afforded the option of a private bedroom regardless of the individual’s financial resources to pay for room and board?
A. …The regulatory requirement acknowledges that an individual may need to share a room due to the financial means available to pay for room and board or may choose to share a room for other reasons. However, when a room is shared, the individual should have a choice in arranging for a roommate.

HCBS Settings - Residential

Q. #1: Are settings on the grounds of or adjacent to “private” institutions considered not to be home and community-based (HCB)?
A. It depends. [Such settings] are not automatically presumed to have the characteristics of an institution. However, if the setting isolates the individual from the broader community or otherwise has the characteristics of an institution or fails to meet the characteristics of a home and community-based setting, the setting would not be considered to be compliant with the regulation….A state’s assessment of settings that isolate should be informed by the public comments received prior to submission of the transition plans. Also, states may elect to adopt more stringent settings characteristics that would not allow a setting to be on the grounds of a private institution….

[Comment: Let’s hope that the comments of the individual’s and families who are directly affected by the state’s assessment are given more weight than comments from people who have little direct knowledge of the setting in question nor any stake in the assessment process and are driven primarily by their own ideology of where people with disabilities should live.]

Q. #2: Must the individual be given a key to his or her bedroom door and be permitted to carry it outside the residence? What types of staff or caregivers would not be considered appropriate to have keys to and individual’s bedroom?…
A. Individuals should have access to their homes at all times unless appropriate limitations have been determined and justified in the person-centered plan…[There are conditions under which the requirements of the rule can be modified depending on the individual’s assessed need for something different.]

Q. #5: Do the [HCB] requirements address the number of individuals living in a residential HCB setting?
A. No. While size may impact the ability or likelihood of a setting to meet the HCB settings requirements, the regulation does not specify size…The HCB rule defines the minimum qualities for a HCB setting as experienced by the individual; states may set a higher threshold for HCB settings than required by the regulation, including the option to establish size restrictions and limitations.

HCB Settings-Non-Residential

Q. #1: Are settings on the grounds of or adjacent to “private” institutions considered not to be home and community-based (HCB)?
A. It depends. [Such settings] are not automatically presumed to have the characteristics of an institution. However, if the setting isolates the individual from the broader community or otherwise has the characteristics of an institution or fails to meet the characteristics of a home a [HCB] setting, the setting would not be considered to be compliant with the regulation…
 
Q. #4: Does the regulation prohibit facility-based or site-based settings?
A. No. The regulation requires that all settings, including facility- or site-based settings, must demonstrate the qualities of HCB settings, ensure the individual’s experience is HCB and not institutional in nature, and does not isolate the individual from the broader community…

Q. #5: do the regulations prohibit individuals from receiving pre-vocational services in a facility-based setting such as a sheltered workshop?
A. No. …a state could allow pre-vocational services delivered in facility-based settings that encourage interaction with the general public (for example, through interaction with customers in a retail setting)….

Q. #6: Will CMS allow dementia-specific adult day care centers?
A. the HCBS regulations do not prohibit disability-specific settings: as with all [HCB] settings …, the setting must meet the requirements of the regulation, such as ensuring the setting chosen by the individual is integrated in and supports full access of individuals receiving Medicaid HCBS to, the greater community, that individual’s rights of privacy, dignity and respect and freedom from coercion and restraint are respected, etc. …

Q. #9: If a state determines that a current HCB setting is not compliant with the new regulation, does it have to stop providing services in that setting immediately?
A. No. …the state has until March 2019 to bring its HCBS programs into compliance with the rule, consistent with its State Transition Plan. States can claim federal matching funds for these services during the transition period.

HCB Settings - Restrictions

Q. #2: What, if any, restrictions on an individual’s choice of roommates, visitors or with whom to interact (e.g., when there is documented history of abuse or exploitation by another individual) are permissible?
A. An individual’s rights, including but not limited to roommates, visitors, or with whom to interact, must be addressed as part of the person-centered planning process and documented in the person-centered plan. Any restrictions on individual choice must be focused on the health and welfare of the individual and the consideration of risk mitigation strategies. The restriction, if it is determined necessary and appropriate in accordance with the specifications in the rule, must be documented in the person-centered plan, and the individual must provide informed consent for the restriction.

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States have a great deal of discretion in the services they provide to Medicaid beneficiaries under state plans and waiver programs. Assuming that the federal HCBS rule remains in its present form, the action right now and probably for the next 5 years will be at the state level. Active participation by people with disabilities and their families is the best way to assure that the state will provide a full array of services and choice to people with disabilities.

Also, see sections of the HCBS rule that recognize the authority of court-appointed guardians to make decisions on behalf of their family member or ward.