A Sea Change for Spaulding

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August/September 2002

By C.A. Wolski

Abby Schunk(right), an AccessSport-America instructor, and Sandra Villante, CTRS, (center) instruct patient, Carlos Agrinsani, on the fine points of using an adaptive windsurfer.

Among the galaxy of colorful sails dotting Boston’s Charles River on any given summer day, there is a squadron of vessels—windsurfers, canoes, kayaks—manned by a cadre of Spaulding Rehabilitation Hospital Network recreational therapists and their patients. But the adaptive sports and recreation program at the 296-bed not-for-profit hospital is about more than giving patients a pleasant day out in the sun. “Whatever the activity, [adaptive sports is about] getting away from that ‘can’t do’ attitude and moving to the ‘can do,’” says Sandra Villante, CTRS, senior certified therapeutic recreation specialist. “We have a lot of people who are going to be permanently disabled, who were active people, now doing all kinds of things. Helping them realize that they can continue doing them and how important it is to structure their time with beneficial activity is our job. It’s fun, it’s enjoyable, it helps people feel comfortable with who they are now, and increases their functional ability at the same time.” Spaulding has three recreational therapists on staff. On a day-to-day basis, each is assigned to one of three therapeutic services: traumatic brain injury, stroke/neurological disorders, and spinal cord injury.

The water-based activities started in 2000 off-site at a boating facility near the hospital. Joseph Martini, vice president of network integration and communication and the architect of the water-based activities, sought the help of AccesSportAmerica, a nonprofit organization that specializes in adapting watercraft and training people with disabilities in their use, to develop the adaptive windsurfing program.

The windsurfers consist of two parallel boards that are joined by a bridge, making them more stable. The windsurfer can be fit with either a chair or standers for the patient and has room to accommodate up to two other people. “There are also boards that you can have just one person on and they have a chase boat, but they’re a little bit wider, so they’re more stable—it really varies the degree of difficulty,” says Caryn Nixon, MS, PT, a physical therapist at Spaulding Rehabilitation Hospital Network. “There are also different-sized sails. They have different means to accommodate grip problems, eg, hooks that you can strap onto the user’s wrist and they fasten onto the boom of the sail. So there are numerous ways to accommodate different patients.” Other water-based activities include rowing and kayaking. An adaptive canoeing program will be added this year.

THE PHOENIXLIKE PIER

The development of this program was timed to coincide with the rebuilding of a pier that Spaulding owns; it was destroyed by fire in 1984. The $1 million insurance settlement allowed the hospital to rebuild the pier to specifications ideal for its adaptive sports program. The program will be sited at the Spaulding pier beginning this summer. “The pier has an adaptive sporting platform, a floating dock where the activities will be launched from,” says Martini. “The pier itself is like any pier, you can fish off the side, it’s for relaxation, it’s got trees on it, but the floating dock…instead of just being a flat dock, one end slopes into the water, to allow ease of accessing kayaks or other water vehicles. Also, the floating dock is equipped with two patient-lift devices.” The pier is accessible to the general public from dawn until dusk, which Martini hopes will create further awareness of the therapeutic work being done at Spaulding.

The adaptive water sports program is free of charge to current inpatients, outpatients, and former patients. “Basically, the main criterion is that they are medically stable,” says Nixon. “We’ve been able to accommodate nearly everyone who has expressed interest. Our main criterion would be that they can tolerate being up in the wheelchair for approximately an hour—the duration that they would be out on the water in a seated position if they’re a seated patient. The cognitive qualifications would depend on the team input from the individual units that are referring the participants, and that’s because we have had extremely low functioning cognitive patients who are able to participate once they’re placed in the chair. And then we’ve had some who have poor memory but their physical capacity is great. It’s contingent on the individual, and that really has to be assessed on a person-by-person basis.” The therapeutic recreation team is developing a list of additional criteria that must be considered when evaluating a patient for inclusion in the program, including skin integrity, weight-bearing status, hemodynamic responses or blood pressure, sun sensitivity, and thermoregulatory problems. Patients must receive a referral from the medical staff to take part in the adaptive sports program.

The program includes patients with a wide variety of conditions, ranging from those being treated for addiction to amputees to stroke patients to those with lupus or spinal cord injuries.

Last year, the program was held two times a week for 8 weeks with 16 patients taking part. The majority of the patients tried windsurfing or kayaking only one time. “The 16 windsurfing participants are only a small portion of the patients who benefit from the therapeutic recreation activities on the pier/dock,” says Martini. “Each year since it has been up and running, we have expanded the amount of time devoted to it. The pilot program was 4 days on the water. Last year we conducted 12 sessions on the water. This year, we will have at least 24 days where patients can participate in structured water activities through AccesSport. That, combined with the number of other therapeutic rec activities—fishing, horticulture—on the pier, makes an impressive number of patients who will use the new structure.” Martini adds that he sees the pier, which abuts public park land, as a high-profile jumping-off point for other therapeutic sports programs, which in the future may include nonwater activities such as adaptive biking.

FISCAL FORTITUDE

Though the pier was paid for through the insurance money received after the fire that destroyed the original structure, funding the adaptive sports program required Martini to be fiscally creative. “The first year I took money out of my operating budget—a small amount—and two of the other vice presidents donated a couple of thousand dollars here and there,” he says. “The second year, there was a larger contribution from my operating budget and we had a couple of fund-raisers for this purpose. What we did after that year, because it was so successful, was establish our Adaptive Sports and Recreation Fund, and we have an annual fund-raiser that raises tens of thousands of dollars—I think it raised $60,000 last year. The pier is going to have paving bricks and what we did is a brick campaign. It was called ‘One Brick at a Time,’ and anybody could buy a brick and it would be engraved with their name or a favorite saying; it cost $100. We raised tens of thousands of dollars through that campaign. Just about half of the employees bought a brick. Everyone on the board of trustees, patients, former patients, and families bought bricks. And so that was a great source of fund-raising. Our hope is that we get support from some larger organizations such as manufacturers of biking equipment, boats, sneakers; those are the organizations we’re talking to right now.”

The pier and funding were the easy parts of getting the program started. Martini and the therapeutic recreation team had to overcome the staff’s skepticism about the viability of an adaptive sports program. “From the clinical staff…there wasn’t a lot of support for this because it did not fit into a traditional inpatient rehabilitation model,” says Martini. “They may not have been familiar with these types of sports recreation or this was an activity that did not occur with an inpatient. We always did terrific discharge planning, but we also needed to create linkages with the community at every level including these leisure and recreational activities. Certainly, there was resistance from the clinical staff because they couldn’t envision it. There was resistance in even getting people out there to see what was really happening with our patients and their families. Now there is a tremendous amount of acceptance.”

BOLSTERING THE SPIRIT

The Spaulding adaptive sports program not only benefits patients’ bodies, but heals their spirit as well. “[We had a] jazz drummer with newly acquired blindness…and he was fantastic,” says Nixon. “He was going along with what he could do on the floors and taking one day at a time and one of the therapists referred him [to the water sports program]. He was like a new man the next day. He couldn’t stop talking about it, and doing all he could to gain back his strength and his mobility. And sure enough, he started out seated and last week, he just walked in these doors. The program gave him the insight that life isn’t over because [he had] acquired this disability. It is indescribably enabling for [patients].”

The program is helpful to patients’ families as well. “Many families participated [in the activities] and the benefit is that they now have a vehicle to be engaged in with their loved ones after discharge,” says Martini. “The disability often fractures the entire family relationship, and a therapeutic group activity/process clearly helps them restabilize while accommodating the disability.”

With the low numbers of patients involved in the program compared to the cost, at first glance, the program appears to be of limited benefit. Martini disputes this. “The success, granted, is hard to quantify in traditional terms, but if you see and speak with participants, see the videos, you clearly see the effect [of adaptive sports] on their lives,” he says. “One of last year’s participants is even competing in organized events now. This program provides a strong psychological and emotional foundation that motivates patients to continue their rehab, progress after discharge, and strive for greater independence and community involvement than they otherwise may not have obtained from a traditional inpatient rehabilitation program. This year we are designing research protocols to definitively measure the impact on functional status as well as quality of life.”

It is the lack of definitive measurements that has made reimbursement for adaptive sports programs impossible in Massachusetts. “I think that insurance companies will really want to see some type of evidence-based, positive outcomes, so I think that’s going to be a major hurdle [for reimbursement],” says Martini, “even though some of the activities and some of the actions involved with these activities that occur outside are not very much different than what occurs inside the hospital in the therapy gym. But if it occurs outside with trained staff, it’s not reimbursable.”

But this lack of reimbursement has not led to the elimination of programs or limited the need for recreational therapists throughout Massachusetts. Villante is the coordinator for the recreational therapist internship program at Spaulding. She says that recreational therapists can be found in a variety of settings from traditional clinical ones to outward bound programs throughout the country.

Though there is no reimbursement for the Spaulding program, its high visibility has been a boon. “The program, since it is in such a public place, has reaped benefits by increasing overall awareness, increasing the number of volunteers and people who want to help with our mission, and increasing donations that allow us to provide services and programs in other areas [such as] the family resource center and community lectures,” says Martini.

C.A. Wolski is associate editor of Rehab Management.

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August/September 2002