‘Unbelievably cruel’: Advocates decry threat to home care program

Alexi and Lorra Jorden have come to rely on personal care attendants who visit their home to help Alexi with daily activities. The attendants, including two biomedical students from the University of Connecticut, assist him with everything from brushing his teeth to using his communication device, providing crucial support for Alexi, who has multiple disabilities including profound autism.

But the program that makes this care possible—Community First Choice (CFC)—now faces elimination under a proposal from Connecticut Governor Ned Lamont.

“For the governor to even propose cutting this program is just unbelievably cruel,” said Lorra Jorden. “The legislature should just throw it back in his lap and say, ‘No.'”

The governor’s plan would transition approximately 7,000 Connecticut residents currently enrolled in CFC to home- and community-based “waiver” programs. While both CFC and waiver programs are funded through Medicaid, they function quite differently.

CFC allows individuals to hire and manage their own personal care attendants, including family members in some cases. The program has no enrollment cap—anyone who qualifies can participate. In contrast, waiver programs have capped enrollment, resulting in waitlists that can stretch for years, leaving people dependent on family caregivers or institutional settings.

Medicaid’s long-term care costs represent a significant portion of Connecticut’s budget. In fiscal year 2025, the state spent more than $4.3 billion on long-term care, accounting for almost 40% of its entire Medicaid budget. About 60% of that spending went toward home and community-based care, while the remainder funded institutional settings.

State officials acknowledge that community-based care is typically more cost-effective than institutional care. However, they argue that CFC enrollment and costs have grown unsustainably. Between 2018 and 2025, enrollment more than doubled, with annual costs rising from $88.8 million to $371 million.

“We then have these years-long waitlists on our waiver programs,” explained Chris Collibee, a spokesperson for the governor’s budget office. “Our goal is to reinvest some of those (CFC) savings into the waivers so that you’re not on the waitlist for years.”

The Lamont administration has also suggested that managing care independently can burden some participants. “Right now, participants often have no choice but to act as employers themselves, taking on responsibilities like recruiting, managing, and, at times, the emotionally difficult process of dismissing a caregiver—all while tracking their budgets and care plan hours,” said spokesperson Rob Blanchard.

The governor’s office says current CFC enrollees could maintain their services, but new applicants seeking community-based care would need to qualify for a waiver program—potentially facing long waitlists.

Disability advocates strongly oppose the proposal. Mary-Ann Langton, a West Hartford resident who has participated in CFC since its inception in 2015, emphasized the program’s importance to her independence.

“I don’t belong in a nursing home. I belong in the community,” Langton said.

Sheldon Toubman, an attorney with Disability Rights Connecticut, called the governor’s rationale “bogus.” He argued that if the administration truly wanted to reduce the burden of self-directed care, they could offer agency-based services alongside CFC rather than eliminating the program entirely.

“Even if we came up with the money for these people, what about the people already waiting on the waiting list for years?” Toubman asked members of the Appropriations Committee during a public hearing.

Some waiver program waitlists extend as long as 10 years, advocates note, forcing many to enter institutional settings while waiting for community-based alternatives.

Tom Fiorentino, who heads a Department of Social Services subcommittee that advises on CFC, likened the proposal to removing someone’s oxygen and promising a replacement later. “That’s not how you run programs,” he said.

Fiorentino, also a board member of The ARC Connecticut, which advocates for people with disabilities, noted the irony in the timing. “We did not expect to be blindsided by our own state government with a cut,” he said, explaining that the disability community had spent the past year concerned about potential federal cuts.

Advocates question why CFC has been singled out when other Medicaid programs haven’t faced similar scrutiny. “It is a bargain on a per-person basis when compared to other state Medicaid programs,” Fiorentino argued.

For families like the Jordens, the value of CFC is clear. “It has been a wonderful, successful program to keep people like my son at home, safe and sound,” Lorra Jorden said, emphasizing that the program allows families to maintain dignity and independence while receiving necessary support.

As the debate continues, thousands of Connecticut residents with disabilities and their families remain uncertain about the future of their care arrangements and their ability to continue living independently in their communities.