The day at The Arc of Alachua County begins at 8:30 a.m. when clients walk through the doors of the one-story facility at 3303 NW 83rd St., right across from Santa Fe College. Some clients need to go to the nursery first to take medication or have their vital signs checked. Others may need to go to the University of Florida to see a physician.
Until 2:30 p.m., they have a busy schedule filled with educational and recreational activities that prepare them to be active participants in society. And that’s what they want. People with disabilities want to be treated like anyone else. They want to be employees; they want to vote, and they want to live independently.
“Our mission is to try to build up our clients to the point where they can learn, grow and become full participants in the community,” said Mark Johnson, development and public relations coordinator for The Arc of Alachua County.
In 1966, parents of children with intellectual and developmental disabilities saw the need to create a space that could offer them appropriate services. Today, The Arc of Alachua County is one of the largest nonprofit organizations of its kind in the county, serving about 300 adults with disabilities and providing them with resources so they can fully participate in the community. Out of approximately 29 Arcs in Florida, The Arc of Alachua County is the state’s fifth-largest. This October marked its 55th year.
The Arc works with people with developmental disabilities such as spina bifida, autism, cerebral palsy, Down syndrome and various intellectual disabilities. Johnson said that the Arc has also been internationally recognized for having one of the best Prader-Willi Syndrome (PWS) programs in the southeastern U.S. PWS is a rare genetic condition that affects multiple parts of the body, but not the intellect. “Intellectually, they are capable of everything,” Johnson said.
“We provide meaningful activities during the day, including education, recreation and work opportunities,” said Danielle Towery, chief operating officer of The Arc of Alachua County. “We also provide independent and semi-independent living supports and community-based group home residential supports.”
Cultivating life skills
In the afternoon, vans waiting outside the facility pick up clients and take them to the group homes. The Arc has about 17 group homes spread throughout the Gainesville area. Each participant is allowed to choose where to live, and, in these homes, they continue with their routines while learning the tools they need to achieve their level of independence.
“The majority of our clients live in one of our group homes, and in the afternoon, they go back to their homes and live a life like you and me growing up,” Johnson said. “There are about four to six people in a home together, and they have a staff member that is like a parent to them.”
Johnson said that the staff member helps them with grocery shopping, deciding what to cook and how to prepare a meal, what to watch on TV or what activity to do, like playing board games or going for a walk.
According to Towery, all services and activities are provided by well-selected and well-trained Direct Support Professionals.
“They need to learn what’s available to them in their communities like work, recreation, leisure and residential, and the skills, supports and services to access the community just like anyone else has access,” Towery said.
The Arc also has a Supported Employment Program that oversights individuals who have a job in the community and teaches them the tools and skills they need to find a job.
“We want them to realize that they have the potential,” said Johnson. “We have a client who has been working with the public-school system for over 30 years, and others who have been employees of the university, local retail and groceries stores around Gainesville.”
But other clients with severe intellectual disabilities cannot expect to be employed, said Johnson.
“Our goal is not to have them learn how to use a computer so that they can get a job. Our goal is to make their lives better,” he said.
People with disabilities in Alachua County are referred to The Arc by a doctor, a family member or a waiver support coordinator (someone who works with disabled people in Florida).
“We provide services to these individuals if we have a slot open for them,” said Johnson. “In Florida, we have several issues with treating, caring and supporting people with disabilities.”
Challenges in Florida
Johnson said that there is a waiting list of about 10 to 11 thousand disabled people to receive services. He said there are not enough providers because the state of Florida does not give enough reimbursement or financial support for services that people with disabilities need.
“Florida is probably 48th in state funding for people with developmental disabilities, which is not a very good position,” said Johnson. “If we are not funded well, we can’t pay employees, and therefore we can’t serve, so, one of the things The Arc is doing is lobbying the state to try to fund these people better.”
“We know what happens if we don’t have The Arc and other private providers,” Johnson added. “They can either go home to a family that might care for them but who doesn’t have the knowledge or ability to do it appropriately, or they can go to a state institution which really doesn’t offer the quality of care that we do.”
Towery said that The Arc and other private providers prevent people with disabilities from being institutionalized, which is more expensive and more restrictive.
“In in-state institutions, they are more or less warehoused; they are just kept in a room,” said Johnson. “Our clients would not be able to participate in society if they were in a state institution or be with loving parents or caregivers that care for them but can’t help them flourish.”
The Arc also works to raise community awareness and reduce societal stigma about people with disabilities. People with disabilities are just like everyone else, Johnson says. They have boyfriends and girlfriends, they care about politics, they might be angry for following a diet and not eating a piece of cake at night.
“They are fun,” he said. “They really are the best people in the world.”