Federal officials have issued long-awaited guidance to help states determine what living arrangements for people with disabilities are considered community-based rather than institutional.

The new guidelines from the Centers for Medicare and Medicaid Services clarify a 2014 rule outlining criteria for programs provided through Medicaid home- and community-based services waivers.

The rule calls for home- and community-based settings to provide full access to the community as well as offer privacy, foster independence and allow people with disabilities to make their own choices about services and providers. The criteria apply to homes, day and job-training programs and other non-residential offerings provided through waivers.

Advertisement - Continue Reading Below

CMS issued guidance on the rule five years ago, but that prompted questions from some states and stakeholders.

The latest information covers the “heightened scrutiny” process, a part of the rule which allows states to provide evidence to CMS demonstrating that a setting that appears to be isolated or have other institutional characteristics should in fact qualify as community-based.

The guidance revised the criteria of an isolating setting and removed examples of typically-isolating environments — which included farms, gated communities and residential schools — that were listed in the 2014 document.

CMS still defines settings as isolating and in need of further review if they offer limited opportunity to interact with the broader community. Other criteria include restricted choices for services or outside activities and locations that are “separate and apart” from the community, without opportunity for participation.

“Promoting community integration for older adults and people with disabilities remains a high priority for CMS,” wrote CMS Deputy Administrator Chris Traylor in a letter releasing the guidance that was sent to state Medicaid directors last month.

Alison Barkoff, who is helping lead the HCBS Advocacy Coalition and is also director of advocacy for the Center for Public Representation, said that the removal of examples could make it harder for states to identify places that require further review through the heightened scrutiny process.

She called on advocates to participate in public comment and stay vigilant in ensuring criteria are followed.

“The rule itself has not been changed. That’s really positive,” Barkoff said. “People are going to have to be very strong in making sure their state is actually identifying and reviewing those settings.”

But Alison Singer, a board member for the National Council on Severe Autism, said she was glad that CMS was no longer singling out farmsteads, like the one in New York where her 21-year-old daughter with autism lives.

“They are out in the community all the time, selling what they grow on the farm, participating in community festivals and going to the movies,” said Singer, who also serves as president of the Autism Science Foundation. “She is much more included in that setting than many people I know who live in group homes that are technically in the community.”

The rule pertaining to home- and community-based settings was originally supposed to take effect this year, but in 2017 the deadline was extended until March 2022. Medicaid officials said they developed the rule after hearing reports of homes built on the sites of former institutions that were being labeled community-based.

Advocates said the rule is important for providing people with disabilities choices about where and how to live.

“It is really about some incredibly basic protections,” Barkoff said. “When you live in a community-based residence, it’s your house so you should be able to decorate the walls, choose the person you share a bedroom with, eat when you’re hungry and make some basic decisions about your life.”