Help for People with Special Needs

Let’s say you’re undergoing chemotherapy treatment for cancer, but you’ve had an allergic reaction to it. Of course, you’re troubled. Now suppose one more thing: Your understanding of what’s happening to you is limited by the fact that you have Down syndrome.

That was the case not long ago for Craig Rutkowski, 39, of Bayonne, who remains under the constant care of his devoted parents, Arlene and Edward Rutkowski, 69 and 71, respectively. His distress was great, and so was theirs. But fortunately, a special hospital initiative eased the experience for them all. It’s called the Special Needs Ambassadors Program (SNAP), and it gives patients with special needs the extra help they may need to take medical treatments in stride.

Volunteers from the hospital staff are specially trained to work with patients and their families, and to act as advocates for them with health care providers to make the accommodations necessary to ease their treatment. Arlene Rutkowski learned of the program when she first registered Craig at Saint Barnabas Cancer Center.

The program, which ran as a pilot for a full year before becoming official last September, developed from Saint Barnabas’ participation as a sponsor of the Special Olympics in 2014. Patricia Miller, operations director of the Cancer Center, and Frank Soldo, director of the Cardiac Catheterization Laboratory, were on a committee designed to educate staff members about special needs athletes. Both have special needs children of their own, and they hoped to take what they learned beyond the games and back to the hospital itself.

After Craig had an allergic reaction to his chemotherapy, he became very agitated at his next session. “The ambassadors brought a therapy dog to calm him,” Rutkowski said. “They explained port insertion to him using a doll. They asked if he liked music, and what song he liked. He said ‘Yellow Submarine,’ and they were all singing ‘Yellow Submarine’ during the procedure.”

Craig was given coloring books and movies to distract him. When he developed thrush, the ambassador had the kitchen make him a smoothie. “They were there every step of the way, every time he was there for an infusion,” Rutkowski said. “It was spectacular, the way they talked to him — and us. It put us at ease too. They worry about the whole family.” (Fortunately, Craig is expected to make a full recovery.)

When the pilot program was announced, 80 staff members volunteered, and to date 70 employees have been trained to be SNAP ambassadors. They’ve also received a toolkit containing an iPad and sensory or tactile materials that can help special needs patients stay calm during stressful situations.

“In the training, we also do role playing — for instance, acting out three difficult scenarios that happened here, and discussing how they could be dealt with differently,” Miller said. The program now is offered at the medical center Monday through Friday from 8 a.m. to 4 p.m. At least five ambassadors are on call every day. “If anyone in the hospital has a special needs patient, they can send out an in-house call to activate the team,” Miller said. “Most of us have crazy busy jobs here, so we try to sign up to be on call on days when we know we’ll be available.”

Saint Barnabas is working to roll out the program to other RWJBarnabas Health facilities in the coming months. To learn more about the Special Needs Ambassadors Program at Saint Barnabas Medical Center, call Patricia Miller at (973) 322-8218.