New regulations for Medicaid, Home and Community-Based Services could alter the lives of people with disabilities. That’s why it’s important for Minnesotans who receive Medicaid to weigh in on the proposed federal community setting regulations and their impacts. More than a dozen people attended a July 22 session at Lutheran Social Services in St. Paul to learn about regulations and how to comment to the Minnesota Department of Human Services (DHS) about a transition plan.

“At the heart of the rule, it gets to what it means to live in an integrated community,” said Sean Burke of the Minnesota Disability Law Center. Another aspect of the rule changes is that settings considered to be institutional in nature would have to prove that they indeed provide community-based services After five years’ of work, the Centers for Medicare & Medicaid Services (CMS), this spring released proposed rules on community-based services to the states. The proposed rules, when finalized, will define the settings in which it is permissible for states to pay for community-based services. The purpose is to ensure that individuals receive services in settings that are integrated in and support full access to the greater community. Opportunities to seek employment and work in competitive and integrated settings, engage in community life, control personal resources, and receive services in the community, to the same degree as individuals who do not receive services, are among the characteristics of everyday life service covered by the rules.

Burke said that like many federal regulations, the rules can be interpreted fairly broadly. Minnesota and other states will prepare their own plans to comply with and transition into following the new regulations.
The Minnesota state plan for the transition is to be released in late August, with the transition to be made by year’s end.

“Minnesota is in a good position as compared to other states but we can do better,” Burke said. That is why public input is vital.

The CMS changes are part of a process that began in the 1970s, as Minnesota and other states began to move away from housing people with disabilities in large institutions. CMS created the HCBS in the early
1980s. The response took different forms in different state, said Burke. In Minnesota it began with four-person foster care or group homes as an alternative to institutional settings.

Passage of the federal Americans with Disabilities Act in 1990 then set the stage for the Olmstead U.S. Supreme Court decision nine years later. That case centered on the rights of people with disabilities to live in the community.

In Minnesota, the court case that raised the issue of the need for community-based setting was Wilkins versus Likins, which began in 1972 and ended with a U.S. District Court ruling in 1974. In that case six residents of Minnesota state hospitals filed a lawsuit alleging that their rights had been violated. The court ruled in their favor, opening up more community-based living options.

Despite decades of legal challenges, problems remain. One issue is that some programs funded through HCBS appear to be more institutional in nature than they should be, Burke said. An example is in New York State, where places with as many as 200 residents considered themselves to be “group homes.” Those settings were challenged as not being true community settings. The federal Department of Justice became involved, which forced CMS to work on new rules.

Any place defined as a community setting must have several characteristics, Burke said. The setting must be integrated in and support full access to the greater community, including opportunities to seek employment and work in integrated settings, engage in community life, control personal resources … and receive services in the community.

The setting is selected by the individual from among setting options including non-disability specific settings and an option for a private unit in a residential setting. Setting options are identified and documented in a person-centered service plan and are based on the individual. In residential settings, resources available for room and board are also considered.

The setting ensures the individual’s right of privacy, dignity and respect, and freedom from coercion and restraint. It also optimizes but doesn’t regiment individual initiative, autonomy and independent in making life choices. These include but are not limited to daily activities, physical environment, and with whom a person interacts.

Another consideration is that a setting must facilitate an individual’s choice for services and supports, and who provides them.

In provider-owned or controlled residential settings, additional conditions have to be met, said Burke. Those conditions range from the need for physical accessibility of a facility to the privacy and lifestyle choices of the individual served. Choices can include whom one’s roommates are, privacy in a room and how a room is furnished and decorated.

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