Cover Story: Making Meaning

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December 2004

By Chris Wolski

Joyce Checksfield, PTMA, (right) works with a pediatric resident in one of the therapy rooms at the Center for Discovery.

Originally created to give children with profound disabilities a place to receive both an education and rehabilitation, the Center for Discovery, Harris, NY, has evolved into a place where not only children but adults can explore activities in a natural setting that will foster a meaningful, fulfilled life.

Located about 90 miles outside of New York City, the center takes full advantage of its rural setting. "We use nature as a motivator," says Terry Hamlin, EdD, chief of programs and staff. "We see children come back to life. Teaching them is easy then. Once you can engage them, and they feel respected, they want to learn."

Among its facilities is a "green" health center that is environmentally friendly, and was implemented to improve the quality of the residents' lives. The building blends into the environment with large windows that allow light to stream in, hardwood floors, and bright colors with plants everywhere. The center is integrated into the site and is a showplace for environmental technology featuring a radiant floor heating system, passive solar components, and shading devices that reduce solar gain. The building is the first health care building in New York's Sullivan County registered with the US Green Building Council.

The two-story building has clearly delimited areas. The first floor is dedicated to medical, dental, and administrative functions. The upper floor is reserved for rehabilitation, social work, and administration.

But the Center for Discovery is much more than a health center, it is a living community where children come first for an education and, in some cases, stay to make a life. In addition to its green building, the site has 29 residential homes-housing 120 children and 110 adults-and four major school buildings dotting its 140 acres. While the children go to school, the adult residents are working at Thanksgiving Farm, a 120-acre organic farm whose produce feeds the residents and about 150 families from the community. The center also has a biodynamic cattle farm that takes up another 300 acres.

The setting is not what makes the center unique; instead it is how the therapy staff uses this natural setting to the residents' advantage.

INTEGRATING CARE
At the Center for Discovery, therapy is not confined to a few designated clinical hours. Instead it can happen anywhere and at anytime. "We do an integrated approach to [rehab] interventions, and so therapists are not confined to a specific room or department, but rather there are lots of opportunities and teachable moments. That can be in all of the environments that are available here whether you're looking at a classroom or a residence or the gym or the pool," says Joyce Checksfield, PT, MA, chief of clinical services.

Therapy has three key components at the center: movement, nature-based activities, and music. Each component has its place in this continuum of care. "We really work to incorporate movement in all parts [of the program] in both the school curriculum and the adult program," says Checksfield. "We also have a nature-based curriculum here. There's a whole nature base that extends across the pediatric and adult programs. And the third key component is music, which is tied to rhythms and allows you to match the music to key the movements. That's not to say that we do not have a very specific framework in terms of rehab. We emphasize...a problem-solving approach that works for people regardless of the severity of their involvement or the etiology. And rehab can come from there."

The center is financed through New York State's department of education, Medicaid, and private fund-raising. Families do not pay to have their children at the center.

Not everyone can be a resident or day student at the center. The center is designed especially for those with some of the most difficult conditions. Even if a child fits these basic criteria, they have to fail through the entire system before they will be considered for the center, says Hamlin. "We take the most severe children. The income level of the family doesn't matter," she says. "The child has to be very severely multiply disabled. Cognitively, the children pass into the severe to profound range. Most of the children lack communication skills and mobility skills. Once a child gets to us, they and the family are pretty beat up by the system."

The goal of the program, no matter the severity of the disability, is to bring out the best in that individual, and make them as independent as they can be. This independence is viewed on a therapeutic sliding scale, which is tailored to the individual needs of the patient. "For many of the children and the adults here, the idea of independence in terms of being fully independent is not going to be attainable," says Checksfield. "But there are unique parts of individuals that you can really strengthen. Even if you don't learn to do a transfer all by yourself, maybe you will be able to contribute to that effort by sustaining good head control or bringing your shoulder girdle down into a good position. For us lots of time, itis what independence means to individuals. It won't necessarily coordinate with what society thinks of as independence. But for the children and their families and the adults and their families, it does still lend itself to an improved quality of life. The best you can be."

Making life meaningful at every stage of one's life is the hallmark of the center and can be seen in very different ways in the pediatric and adult programs.

FINDING MEANING
The students in the center's Elizabeth L. Berman School are placed in the classroom situations that best fit their needs. For instance, those who have neuromotor needs will be in one classroom, where their seating and mobility needs are addressed. Autistic students - who can be very active - will be placed in a classroom that emphasizes schedules and predictability. "Our children are successful in the classrooms here, and the adults are successful in the programs here, because our environments are structured and organized in a way to promote interaction and participation," says Checksfield. "That's why sometimes when people come here, I think they're very surprised what the children and adults can accomplish. But they are working, learning, living in a world that has eliminated a lot of the barriers in society, and that's where some of the opportunity for success comes in."

The adult residents typically come from the surrounding area, and have the choice of working at Thanksgiving Farm, where they tend the raised vegetable beds with adapted farming implements, or one of the center's other nature-based programs. About 40% of the food consumed at the Center for Discovery is raised at Thanksgiving Farm. "We loved the whole organic farm idea because it created real work opportunities," says Richard Humleker, chief of development. "That's the struggle every day with the population of folks who are severely disabled, to make the work real. We didn't want this to be a pretend farm, with them bagging and unbagging things all day. And that's still our struggle, making the work accessible. But our engineering team, our clinicians, find a way because they like the end result - good food."

The adults can choose whatever work at the farm they would like to pursue, which continues the meaning-laden aspect of the program. "It is meaningful work - it's not putting pens together and having them taken apart at the end of the day so you [can reassemble them]...it's really about adapting activities so they are meaningful," says Checksfield. "If there's one thing that we talk about with all the therapists and the teachers here, it's what is a functional goal, what is functional work, what is functional learning? It's whatever increases that person's participation with other people, within an environment, within an activity. And it has to be meaningful to the person."

Meaning is not a one-way street at the center. The therapists have, in some cases, been as much the beneficiaries of the therapeutic program as the children and adults.

THERAPEUTIC MEANING
Checksfield, who has been involved with the center since 1975, has seen many therapists come and go. In almost every case, she has watched as expectations and preconceived notions have been shattered. "When people first come in, their thought is that these are children and adults who can't do things, who can't communicate, who can't do daily activities, who can't move. Then they're here for just a little while, and they realize that all the people here do have movement, and if you can facilitate that, they can contribute a lot to activities. And they do communicate. It might not be verbally, it might be vocalization, or gesture, or facial expression," she says. "That's the fun of being here a long time, not only do you know the children and adults for a long time, but you know the staff for a long time. You see them grow."

The hallmark of the staff is open-mindedness, says Hamlin. "If someone is rigid in their philosophy or thinks that they know it all, that's not the person we want," she says. "We want someone who is willing to learn and change and grow with us, just as we expect the children to do the same thing. And they have to love the outdoors."

And their time at the center can have profound implications on the therapist's life, says Hamlin. "People just thrive here, whether you're a resident or staff-there's meaning here for everybody," she says. "When parents walk here, they say it almost feels spiritual."

There are about 1,000 staff including 50 therapists and six physicians at the center, which is led by Patrick Dollard, MEd.

While treating the patients is the primary function of the center, the family is part of the integrated care that is offered by the Center for Discovery.

FAMILY INTERACTION
Checksfield says that the family is a crucial component in the therapeutic process. "We know that what makes a strong program is the involvement of families. You can have a wonderful, strong educational program and excellent therapeutic interventions, but you need families to be connected to their children. You can never try to replace the family connection," she says.

The center publishes a regular activities calendar and encourages the parents and siblings to take part in the programs.

And while the residents might be the focus of care, siblings of patients are also looked after. The center recently held one of its regular sibling weekends, which are designed to familiarize the resident and day students' siblings with the center and focus attention on them.

There is no doubt that the Center for Discovery is a community, but it is not an isolated one. The center, through Thanksgiving Farm in particular, involves the bigger community of Harris in its activities.

REVERSE INCLUSION
There are about 150 families in and around Harris that rely on the center for their fresh produce. Many of these families have been involved in the center's co-op program for years and have gotten to know the adult residents well.

There is a yearly harvest festival, which brings hundreds of people from the community out to the center. In addition, there are other activities that bring co-op members to the center to help weed vegetable beds.

Many of the people from the community have seen center residents on outings in Harris and the surrounding environs, but this reverse inclusion has benefits for both the residents and the people from the community. "When you think of integration, the person with the disability leaves their home or the classroom and goes into the community to get a haircut or go to the store. But sometimes for us it's reverse integration. The whole idea is to have people come to the center where all the adaptations, all the environments, promote the success of people with disabilities," says Checksfield. "For these individuals, it's really an opportunity for that confidence and self-esteem that comes from people recognizing your independence. But for people from the community, it's also realizing that locomotion does not just mean on your feet and walking between places-you can still be fully independent."

One of the newest realms that the center is entering is the area of wellness for both the patients and families.

INSTITUTE WITHOUT WALLS
The Janet and Gerald Carrus Institute was founded in 2001 to act as a clearinghouse for information and as a place to foster research. Currently, the institute has no permanent home; its programs are sited all over the center's grounds, though a permanent green building is planned for the future.

The institute has a Web site that is both a general information site and a way for new and experienced parents to exchange tips and help those who are learning how to care for their child. The institute offers programs ranging from yoga to music therapy and works with both parents and siblings.

While the Center for Discovery has made great strides since it was founded, like any community it will continue to grow and change as will its residents.

FUTURE OF DISCOVERY
Since the center will have about 50 children graduating from the pediatric program in the next 5 years, Humleker hopes to see the adult program expand to fill this need. He also expects that many of the existing buildings will be retrofitted to become green.

Hamlin's view is much more global, going in a direction that is different than the traditional rehabilitation paradigm. "We are really looking at the health and wellness aspect," she says. "I think our future is merging health and wellness with the field of disability, and really promoting that. And teaching the rest of the world."

C.A. Wolski is editor of Rehab Management.

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December 2004