“It’s in our DNA. If there’s a family with a disabled individual, we’ll do anything and everything we can to support and assist that person and his or her family.” James Branciforte, President and CEO
By VELVET SPICER
Half a century ago, children and adults with intellectual or developmental disabilities often were misunderstood. There was a stigma associated with the differently abled and habitually they were failed, institutionalized rather than educated, hidden away rather than allowed to flourish. During the 1970s that began to change with the enactment of Public Law 94-142, the Education for All Handicapped Children Act, which guarantees a free, appropriate public education for all children with disabilities.
A national housing law also was passed that helped meet the housing needs of low income families and individuals with disabilities. Still, there was little in place to bridge the gap between education and adulthood for the hundreds of thousands of individuals with intellectual and developmental disabilities nationwide. Although Rochester in the 1970s had an offshoot of the national Association for Retarded Citizens (ARC), as the agency was then known, it was neither convenient nor cost effective for parents outside the city to send their children there as they aged out of high school. “The cost of transportation was the equivalent of sending a kid off to college,” said Lifetime Assistance Inc. founding director Donna Lowry. “And you only send a child off to college for four years; you send a handicapped child indefinitely.”
In 1978, Lowry and six other parents of children with developmental disabilities in the Brockport area were told by the ARC executive director that it had plans to add services on the west side, but not for five years. “And we decided we couldn’t wait five years,” Lowry said. Lifetime Assistance was born of that decision. “We had help from everybody we knew to start a program on the west side of the county,” Lowry recalled. “What helped us was the fact that there was a court case that said they had to decrease the population in the developmental centers and send the residents back to their county of origin, so they needed programs in Monroe County.” With Albany’s blessing, Lifetime Assistance founders Lowry and her husband Donald, Vincent Lista, Mary Lista, Joseph Harkin, Nancy Harkin and Mabel Koss started a day treatment center, now referred to as a day habilitation center, in November of that year. The facility was on Clinton Street in Brockport, where the village’s police department is now.
From those humble beginnings 40 years ago, Lifetime Assistance has grown from a tiny agency with seven founders to the region’s largest and most comprehensive developmental disabilities service agency, whose focus remains on being there for families. “The roots of the organization are built upon families in need,” said Lifetime Assistance CEO Jamie Branciforte. “It’s in our DNA. If there’s a family with a disabled individual, we’ll do anything and everything we can to support and assist that person and his or her family.” Lifetime Assistance serves 1,800 people in some 70 locations. The agency provides everything from homes for people to jobs to clinical services to a type of day service for people with severe disabilities. The agency employs 1,500 people and has numerous volunteers. “When we started out we just wanted a little agency to take care of our children on the west side of the county,” Lowry said with a laugh. “We have grown to be, I think, the largest agency in the county and I think part of that is due to our reputation, because it was started by parents and there are still parents on the board.” Branciforte, who himself has been with the organization three decades, said Lifetime Assistance has grown each year. Last year the nonprofit agency grew its revenues 7.5 percent, he said, and he expects the same in 2018. This year, the organization should see revenues of $75 million. “This is unusual,” he said. “It’s at a time where there’s very little growth or expansion in our field.”
Challenges and Opportunities
Early on, Lifetime Assistance faced many of the challenges other not-for-profit agencies face: negotiating contracts, working with government bureaucracy and funding. But the organization stumbled upon one unique challenge: finding appropriate facilities. “We didn’t have any equity,” Lowry recalled. There was a demand for housing in 1978 that Lowry and her colleagues were eager to help with, but the state at the time stipulated that facilities could not be purchased, they must be rented. “It had to be a large house; it had to have 10 or 12 people in it,” Lowry said. “Nobody wanted to rent to us because we had no equity, no way of building equity because we billed the state for the services we provided and when the money came back we paid it to the staff or to vendors.” In stepped two of the founding parents, who owned a restaurant and property they rented to college students. “In order to start our first (group) home, they moved out of their home and into one of their rental properties and rented us their home,” Lowry explained, noting that if Lifetime Assistance housed 10 developmentally disabled people, for example, 50 percent had to come from the community. “And that was the way it was for many, many years. And they finally let us start buying houses.”
The challenges, and opportunities, would continue as the agency grew. Lifetime Assistance desperately wanted a workshop, a place in which those with developmental disabilities could go to work and earn a little money for doing small tasks for local businesses. “But we had to settle for what the state was willing to pay for,” Lowry said, and a workshop was not among the things the state would fund in Lifetime Assistance’s early days. Eventually that changed and the agency was allowed to open its workshop in Spencerport, Lowry said. LAICO Industries was founded in 1980, offering employment opportunities for 70 people. Robert and Jacqueline Sperandio, of Sporting Dog Specialties Inc., award LAICO its first contract. “There are some people who go to the workshop who progress to the point where with training through the Department of Vocational Rehabilitation they eventually can go out and work in the community,” Lowry explained of the individuals at LAICO. “There’s a lot of things you don’t think about that someone can do. And I’m
not telling you they get paid a lot of money, because they don’t, but they’re not sitting at home doing nothing. They’re in the community, they have friends, there are activities for them.”
Another challenge Lifetime Assistance, and other agencies like it, have and will face are limited resources and limited public funding available to enhance current services. “And what that has resulted in in our field is tremendous pressures on the frontline direct service professionals (DSP) who are delivering the heart and soul of our work,” Branciforte said.
“They are delivering on our mission every day.”
Lifetime Assistance works with state government to ensure good salaries, Branciforte said, but despite some measured
success there also remains a shortage of workers within the human services field. “Somebody can go to work at one of the big box stores for comparable hourly pay and a job that is much less demanding,” he acknowledged. “We really need to work hard in that regard to make sure there are solid, good, meaningful wages for our front line, direct support professionals.” That’s a societal decision, Branciforte said. “Do we value the work of that profession—whether it’s at Lifetime or whether it’s in home care for an elderly parent or in a nursing home—to really pay quality wages and meaningful wages where somebody can make a living,” he said. “If we do, I think the future is bright. If we don’t, I
think we will all have challenges.”
The next 40 years
To that end, Lifetime Assistance and Action for a Better Community Inc. have partnered on a state economic development grant to work on anti-poverty initiatives through employment, Branciforte said. “Because ABC has a good track record and a good model for reaching into economically disadvantaged communities, what we have said is, help us connect with people, help us define the barriers to employment and help us to train people and develop new employees, and we will promise these employees a job,” he explained. The program began in April and Lifetime Assistance has promised jobs to 70 people from impoverished neighborhoods over the next 12 months. “It’s exciting; it’s collaboration,” Branciforte said. “That’s the spirit of services today and tomorrow. Collaboration is an absolute key to the success of human service agencies.” Branciforte said one of the major changes in the next three to five years is a move from public policy into managed care funding methodologies. Funding for Lifetime Assistance’s services will be based on value-
based outcomes, how well the agency is doing at delivering its services. “So what we’ve done at Lifetime Assistance
is we’ve banded together with about 35 other agencies to prepare for the switch to managed care, basically managing services and budgets together,” he explained. Those 35 agencies are from communities in the state’s 17 westernmost counties. “We’ve developed a new entity called Person Centered Services, and that entity launches its first major step on July 1, where these 35 agencies will together develop a care coordination organization to pool together one another’s resources to provide the absolute best care and the best managed service model based on an individualized life plan where families have one central place to go.”
Branciforte also said the coming years will bring a welcome shift to a person driven service modality that will place an
emphasis on integration and inclusion. Last year the agency opened Frances Apartments in Brockport at which one-quarter of the apartments are set aside for people with developmental disabilities. “The whole idea of that model is we’re
not segregating people with disabilities,” he said. “That exemplify es where we’re headed, in that people not that long ago
were warehoused. They were separated in a very real way and a very sad and tragic way in institutions, in cold, cinder block buildings, because they happened to have a disability.”
One thing that will not change in Lifetime Assistance’s next four decades is its culture, said Patrick Burke, former chairman of the Lifetime Assistance Foundation board of directors. Burke has been on the board for more than 20 years.
“They really are a special organization. They’ve developed a culture of caring in a world that’s way too clinical,” Burke said. “No matter what the disability or ability of a person, there’s got to be a culture of caring to make it work well, and I think they’ve been fantastic at doing that.” Burke noted how difficult it is for an organization to maintain its culture as
it grows, but said Lifetime Assistance’s founders, board and current leadership are dedicated to that task. “They quietly go about serving the community that’s rarely in the spotlight, people with developmental disabilities,” Burke said. “And I think that speaks volumes about Rochester as a community, that we can have organizations like Lifetime that for 40 years has served the community of people with developmental disabilities and their families. It’s very hard work.”
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