Providence, R.I., woman with Down syndrome lives independently, thanks to a network of assistants providing a new style of care

From The Providence Journal:

Megan Reynolds (pictured) is chatting with visitors, her foot resting on her knee as she puts on a sneaker, preparing for a trip to the gym.

Amie Cabral, next to her on the couch, gives Reynolds’ elbow a little nudge. “Wrong foot,” she says.

Reynolds, 22, switches feet. She resumes tying her sneaker and answering questions about her relationship with Cabral, 20 –– a Rhode Island College student who is one of her four employees.

“I usually prefer women to men,” Reynolds explains, “because women have better ways to help me put my emotions in check. My anger is an issue. …

“They help me with my daily living skills. They help me by bringing me to the doctors. They remind me to get my medication when I need to take it. They help with transportation to social events with friends.”

Reynolds, who has Down syndrome, participates in a program called self-directed care. With her mother coordinating, she uses the state money that supports her (in her case, about $35,000 a year) to hire her own assistants, rather than having an agency take care of her.

She lives with a roommate in a Providence ranch house, and personal assistants come to help for 45 to 55 hours a week. On her own, she takes the city bus to her job as an office worker and also does volunteer work.

Reynolds is the new face of developmental disabilities –– a young adult who never lived in an institution, who went to school, who takes care of herself and who has high expectations for independence and employment.

“She appears very, very capable if you were to meet her, and she is very capable, but she also needs help,” says Reynolds’ mother, Renee Doran.

The arrangement that supports Megan Reynolds exemplifies the web of services that have grown up since the state started moving people out of the Ladd Center, the notorious state institution, in the 1980s — a web that providers and advocates say is now at risk of unraveling.

The system of care for developmentally disabled people is facing an upheaval, made all the more difficult by expected drastic cuts in funding for services. Starting July 1, the state is revamping its payment methodology, introducing a new system intended to increase fairness and accountability.

The new system, called Project Sustainability, is also intended to save money — but not nearly as much as the House of Representatives wants to cut.

The House Friday approved $213 million for services to people with developmental disabilities in the fiscal year that begins Friday. That’s $25 million less than the revised budget for the current fiscal year, and $11 million less than what the governor recommended. (Because these services are funded by Medicaid, just under half of the reduction is savings for the state; the rest is federal matching funds that the state will not receive.)

Project Sustainability has been in development for two years, with the participation of providers. But the House budget cuts are new and unexpected, and come on the heels of three consecutive years of cutbacks. Even before the latest changes, several provider agencies had sued the state over payment cuts.

“The cuts are just so massive, it’s so hard to get my head around,” said Thomas P. Kane, president and CEO of CranstonARC, an agency serving some 400 people with developmental disabilities. “We’re going to have to stop some of the services we do.”

“There’s no easy answer here because we all know, including the advocates, that resources are shrinking,” said Mary Okero, executive director of the Rhode Island Developmental Disabilities Council, a state agency that is federally mandated and funded. “My concern is that some of our lawmakers don’t understand what a family goes through on a day-to-day basis to raise a child with special needs.”

John Young, deputy secretary of health and human services, acknowledges that, if the Senate goes along with the House budget, providers will be hard hit. But he pledged the state would work with them. “We have the obligation to figure it out as best we can,” he said. “Then, we will tell the Assembly if there are gaps we haven’t managed to close.”

The state is responsible for 3,597 adults with developmental disabilities — lifelong conditions such as Down syndrome, cerebral palsy or autism that impair one’s ability to live independently. Only a minority live in group homes — and, in fact, one in eight lives alone.

The rest live in supervised apartments, with relatives, or in “shared living” with a nonrelative. They draw on an array of services to help with daily tasks, provide transportation and keep them active and, often, employed. Caring for a person in a group home costs, on average, $108,000 a year, while these community-based services average one-quarter to one-third that amount.

Each individual receives a set funding level from the state based on his or her needs. Most clients choose one of 39 agencies to provide supports, but a few, like Megan Reynolds, hire help on their own.

Over the years, each of these agencies negotiated different payment rates, so that today the state pays different prices for the same services. The state Department of Behavioral Healthcare, Developmental Disabilities and Hospitals introduced Project Sustainability to bring clarity and fairness to the system.

Project Sustainability has two key aspects: a new method of assessing clients that ascertains which services each one needs to maximize independence; and a new payment schedule that pays each provider the same amount for a given service. There is little disagreement about the need for a fair payment structure, nor the value of the new assessment tool, but many concerns linger.

“Project Sustainability has become the cover for paying less money,” says Ray Arsenault, executive director of Spurwink RI, an agency serving 60 people. “We’re equalizing rates at a much lower level than the system needs.”

“If we were in a time of expanding budgets, this would be easier to absorb and adjust to,” says Donna Martin, executive director of the Community Provider Network of RI, a trade group representing 19 provider agencies. With the latest cutbacks, Martin fears some agencies will shut their doors.

The state hopes to encourage more of its developmentally disabled clients to move into self-directed care like Megan Reynolds. This approach allows greater independence and control, and sometimes costs less. Although self-directed care has been available for two decades, only 240 are taking advantage of it, and state officials say many more could.

But not everyone with a developmental disability could do what Reynolds does. Some people have severe intellectual or behavioral problems. (The state says that nearly half the developmental disabilities population will always need 24-hour care.) And not everyone has a smart, youthful, dedicated mother like Renee Doran, who spends countless uncompensated hours working as a one-woman employment agency for her daughter.

Doran, 46, a software engineer, lives in North Attleboro and has two other much younger children. But she still owns the house where Reynolds grew up and now lives, and five years ago she found a roommate for Reynolds, a woman who fills in as personal assistant only when one of the regulars is unexpectedly unavailable.

“My daughter by nature would tend to be isolated, so it’s important that she has people around her to talk to,” Doran says. “Otherwise, she’d spend her whole time watching TV or reading on the computer.”

Doran usually hires college students from nearby Providence College or Rhode Island College. Reynolds then meets the prospects to see if they hit it off. The personal assistants help Reynolds manage her life, prodding her to do such chores as her laundry — tasks she knows how to do, but has trouble staying focused on.

Doran worries that her daughter may become a victim of her own success. Will the state decide that she needs less help because she’s doing so well, or will it understand that she’s doing so well only because she has all this help? Will there be enough flexibility for Reynolds to try new things and grow in new ways?

“I want her to be striving to be better, striving maybe for a new job, or striving to develop new hobbies,” Doran says. “I want her to grow and change.”