Twenty-two years ago, no one could help Agnes McCray get a changing table when she was pregnant with her first child.
McCray, who has cerebral palsy and uses a wheelchair, said everyone else told her there was no such thing as a changing table accessible to someone in a mobility device.
That was, until she called Enable, an agency in Syracuse that provides advocacy and services to the disabled, or what McCray calls “extravagant disabilities.”
“Don Myxner, who is their mobility device specialist, he actually built me a table that I was able to pass on to three other mothers with extravagant differences,” McCray said. “That’s the difference they make, their family support and the foundation that’s built with it. Most programs that you see or most agencies are just getting into the family support piece. Enable is all about the families, whether it’s the parents of the persons with extravagant differences or it’s someone like me. I know they’ve been there for me as my children were growing up, both for myself and for my three children.”
Enable, which is also known as the United Cerebral Palsy and Handicapped Children’s Association of Syracuse Inc., provides clinical, educational, personal and community services to people with disabilities all over Central New York. The agency serves more than 1,500 adults and children each year.
“Enable empowers people and offers choice and tries to be as inclusive as possible,” said Sally Johnson, advocacy coordinator for Enable. “It provides therapy services, clinical services, it really tries to help people. We’re friendly with families. We listen to what people need and work with them to develop plans to meaningfully help them. I feel very good about what we do. People feel like they’re a part of the Enable family.”
“Straightforward, our mission is enhancing the quality of life for people with disabilities,” said Carol Tytler, Enable’s director of communications. “Secondary in our mission is that we have an array of services.”
A broad array of services
That array of services has been growing since Enable was founded in 1948 as the United Cerebral Palsy and Handicapped Children’s Association of Syracuse Inc. (UCP) by Lionel Grossman, whose daughter Faith had cerebral palsy. Over the last six and a half decades, the program has expanded to include off-site housing, early intervention programs, an integrated preschool and more. The agency is now located at 1603 Court Street in a LEED-certified building, where it moved in 2006. The preschool program just moved to the building a few weeks ago.
“Their building was being sold, so they moved over here,” Tytler said, “so we’ve been doing some renovating to accommodate them.”
The agency has moved its clinical services — physical and occupational therapy for all ages — to the opposite side of the building to make room for its universal pre-K program, which it contracts with the Syracuse City School District to provide. It also provides an integrated preschool program and an Applied Behavioral Analysis (ABA) preschool classroom for children with autism.
“[ABA is] meeting every day about every child and talking about the behaviors that we want to change,” said Phil Grajko, director of education services. ‘We develop a behavior plan. When a staff member takes a child into that discrete trial room, they have that plan right there and they’re working on that behavior. When they come back in the classroom, in the mainstream of things, I guess, we observe. The staff observes to see if that behavior is showing up. If not, we keep going back until it does.”
The preschool is also taking over the space that once housed Enable’s therapy pool. Thanks to a $15,000 grant from the Jim and Juli Boeheim Foundation, the space will be converted into a gym for the preschool.
In addition to the preschool, Enable is a licensed day care. It also provides augmentative communication services, early intervention services, sensory integration therapy and speech and language therapy. For school-aged children and adults, those services are also available, as are job training and coaching, job placement, individualized living services, day habilitation, home service and more.
One service that is particularly helpful to families is Project Adapt, an adaptive technology lending library. The program allows families to borrow adaptive technology, from toys to adapted bicycles, so that they don’t have to purchase them.
“They can try out that equipment and decide if it’s right for their needs,” Tytler said, “and if it is, we can help them get the resources to obtain that on a long-term basis, or maybe it’s just a short-term need.”
Tytler said the service can save families a fortune.
“Average price on an adaptive toy is $100,” she said. “It could be a very simplistic toy — you press a button and the animal walks. By the time you adapt that and put a switch on it, you’re talking about $100. For families who may be focused on other needs their child has, whether they’re medical needs or just groceries and rent and all those needs, spending $100 on one simple toy is often out of reach. So they come and they borrow toys from Project Adapt, and when their child outgrows the toy or outgrows their interest in it, they can borrow something new. It’s a wonderful model, and the $100 we invested in it is well-spent. During the lifetime of that toy, it may be loaned out to 20 or 30 different kids. That investment gets maximized that way.”
A roll along the parkway
While the majority of funding for Enable’s services comes from Medicaid, the organization holds occasional fundraisers to supplement its budget.
“There are families with private insurance that use our services,” Tytler said. “If you have a copay, whether it’s $10 or $20 or $40 per visit, and you’re coming for physical therapy every week, every week for the rest of your child’s life, that adds up. Some of the fundraising that we do goes into that scholarship fund, and it’s really helping those families out with those copays that would be overwhelming if we weren’t able to offer that.”
In addition, fundraisers provide tuition assistance for the preschool program, and they support Project Adapt so that Enable can lend out adaptive equipment for free.
This past Sunday, July 22, Enable hosted an event, Anything that Rolls, at Onondaga Lake Parkway in Liverpool that was, in part, inspired by Project Adapt.
“We have so many people that come in and borrow mobility equipment — wheelchairs, walkers — but adapted bicycles are really a big thing,” Tytler said. “We were thinking about how we could come up with a big event that could be really fun and family-oriented and still tied to our mission. That’s where Anything That Rolls came from — the idea that people could have wheelchairs and adapted bikes and be participating in this event.”
This is the first time Enable has held the event, and it was an unqualified success. More than 200 people participated, and, as of Sunday morning, more than $30,000 had been raised, with more donations waiting to be tabulated. Anything that Rolls was sponsored by companies like Wegmans, the Central New York Agency, Empower Federal Credit Union and Custom Wealth Management — “some really big, important companies in this community are saying, ‘We value Enable and what you do, and we think it’s a great event.’ We’re very happy to have them be a part of it,” Tytler said.
Barb Tresness of Manlius, mother of Graham, who has multiple disabilities, was on the committee for the event and one of the top fundraisers.
“I’m just grateful to be a part of something today that can raise awareness and let people like my son know that they’re loved and supported in a way that they don’t always get,” Tresness said. “Sometimes, people will stare at someone in a wheelchair when they don’t know what’s going on, and this teaches you to look beyond what you see to who the person is. I’m grateful to be a part of Enable.”
Celebrating abilities, not disabilities
Many people share Tresness’ sentiments, according to Tytler, who said that surveys of Enable’s participants show that the agency is particularly good at individualizing plans to suit people’s needs.
“That’s definitely one of our guiding principles, to be able to individualize services to a person,” Tytler said. “It may be that they want to live in an apartment, but they need some support, so can we find them someone who would share the apartment with them and provide them with the supports that they need? And maybe from there they’re out in the community, or they have a job. We’re really able to look at an individual and determine what we need to do to help them achieve and help them put together those pieces to make it happen.”
Tytler relayed the story of a woman who had come to Enable through its Home Services program, which is funded through a grant from the New York State Elks. The program, coordinated by Diane Weirman, allows for home visits to people who might have otherwise fallen through the cracks, people who developed a disability later in life through an accident or disease and didn’t “enter the system” early on.
“There was a woman Diane had worked with. She did the visit because of accessibility issues. She was in a wheelchair, and needed to have a ramp built onto her home,” Tytler said. “Diane was talking to her about how she loves to garden, but she’s not able to do it anymore. She had these beautiful flower gardens around her home. People with MS have difficulty controlling their body temperature, so she couldn’t spend the time outside in the sun. Because we have the Home Services program, and we did the home visit and that conversation happened, Diane said, ‘Are you aware of cooling vests? I could access some funding for you.’ So Diane was able to get her a cooling vest so she could go back out and garden in her garden. I feel like because of those things, we really impacted, on a very personal level, on her life and her ability to stay in her home.”
Enable also prides itself on its inclusive model, from its preschool program to its independent housing in the communities it serves.
“You look at our preschool. It’s an inclusive model, kids with disabilities and typical kids there,” Tytler said. “You look at our supported employment program. We don’t have a workshop. I couldn’t give you a tour of a workshop because there are over a hundred people we support in employment that we support at individual companies and businesses. To go into that business, you may or may not know that person was able to secure that job through the efforts of Enable and a job coach working with them from Enable. Probably to our detriment, we do a good job of fading into the background. We don’t go in there with a shirt with our logo emblazoned on it.”
That model, Tytler said, has allowed for the development of a new set of generational ideals about disability.
“I go out on the playground, and I see all those kids running around together with each other,” she said. ‘I’m old enough to remember all the kids with disabilities were, not even in a different classroom, they were in a different building. This generation of kids, because we have this inclusive model, they’re seeing people with disabilities are just that: they’re people. It’s the norm that they are part of our society. I think that generation of kids is going to have a completely different perspective than prior generations may have had.”
Agnes McCray said that’s something she loves about Enable — its ability to look past people’s difference.
“It shows that we can be successful as all people, and it gives that support, and it says, ‘Let’s celebrate our differences,’” she said. “It’s not something we should put aside or be afraid of.”
Barb Tresness agreed.
“All of us who have someone who’s in a wheelchair or who has a different need constantly advocate, and Enable helps us do that,” Tresness said. “They help us celebrate our abilities instead of our disabilities.”
For more information on Enable, visit their website at enablecny.org.
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club’s Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.