(Photo from the Harry S. Truman Library)

Elderly people, people with disabilities, and representatives of people in those categories are getting excited about a chance to help shape the new federal Community First Choice (CFC) community-based long-term care (LTC) program.

Officials at the Centers for Medicare & Medicaid Services (CMS) devoted much of the preamble to the final rule for the CFC program explaining who should get seats on new state “development and implementation councils.”

The drafters of the Patient Protection and Affordable Care Act of 2010 (PPACA) added Section 2401 – the CFC program provision — and other provisions to PPACA in an effort to increase the chances that people who need long-term care (LTC) will be able to stay in their homes rather than having to enter nursing homes.

State government agencies run state Medicaid programs using a combination of state and federal money. CMS, an arm of the U.S. Department of Health and Human Services (HHS), influences the state Medicaid programs by tying access to federal aid to success at meeting federal program requirements.

The CFC program is supposed to expand Medicaid long-term support programs by providing a 6-percentage-point increase in federal Medicaid matching funds to a state that provides community-based attendant services and supports to beneficiaries who would otherwise be confined to a nursing home, CMS officials say.

A state is supposed to consult with its CFC development and implementation council when it develops or updates its CFC plan.

The CFC program law requires that each state council “include a majority of members with disabilities, elderly individuals and their representatives,” officials say in the preamble to the CFC final rule.

Many states have already been using the rules spelled out in draft regulations to start the process of organizing the councils. 

Commenters have asked the CMS officials writing the final rule to include seats for caregivers on the council, ensure that some seats on the council go to people with the most severe disabilities, and take steps to emphasize how much authority the CFC development councils ought to have.

CMS officials have declined to elaborate much on the language in PPACA Section 2401. In response to a suggestion that CMS require that the CFC development councils include care providers, for example, officials say, “We disagree.”

“The statute only directs that the majority of the council must consist of elderly or disabled individuals, and their representatives,” officials say. “We do not believe it is appropriate to require other representation.”

CMS officials also have declined to elaborate on PPACA Section 2401 requirements for development council openness.

“We agree that the council’s meetings and other functions should be accessible to individuals to facilitate their full participation,” CMS officials say in the preamble.

A state should describe how it operates its CFC development council, including how it provides for openness, in its CFC application, or “state plan amendment” (SPA), officials say.

“We do encourage these meetings to be held in a way that facilitates participation by a broad range of individuals,” officials say.

But “states have the flexibility to decide how to meet these requirements,” officials say.

A state also can decide whether to use an existing council to meet the CFC council requirement, set its council’s meeting schedule, and decide how to use its council’s recommendations when drafting its SPA, officials say.

“States need to consider the council’s input and should make every effort to incorporate the feedback of the council in these decisions,” officials say. “However, we are not interpreting ‘collaboration’ as total concurrence.”

Members of Congress created the CFC program because of concerns that Medicaid — the government program that provides support for many people who need long-term care — focuses mainly on paying for nursing home care, even when some people want to stay at home and might be able to get along at home with a package of home care and adult day care services that would be cheaper than nursing home care.

Advocates of the focus on nursing homes argue that a nursing home is often the most affordable, most practical vehicle for providing LTC for an individual with severe disabilities.

Critics of that approach say it ends up trapping people who would be happier if they could live outside a nursing home.

CMS officials note that HHS is also working on expanding a separate but related Home and Community-Based Services state Medicaid plan option program that was authorized in 2005. The program should make it easier for states to provide home-based and community-based services, officials say.