When your child has enough doctors and medical specialists to create a basketball team, it would be helpful if these professionals could meet together to collaborate on care strategies. The new UMass Down Syndrome Program makes this concept a reality for many individuals with Down syndrome.
A person typically has 46 chromosomes; a person with Down syndrome has 47. That additional chromosome may affect various body systems, which in turn might require medical care or monitoring.
According to the program's website: “An estimated 5,000 people with Down syndrome live in Massachusetts. Of those, approximately 25% live in Central or Western Massachusetts.” The UMass Down Syndrome Program is a multidisciplinary coordinated care program for individuals of all ages with Down syndrome, based out of UMass Memorial Medical Center's University Lake Ave. Campus in Worcester.
Its presence means that for the first time, parents of children with Down syndrome well beyond Boston can have their child's multiple medical appointments and needs met in one coordinated location.
“We believe that all children and adults with Down syndrome should have access to high-quality medical care. The UMass Down Syndrome clinic provides easy access to that care to individuals who live in Central and Western Massachusetts,” said Maureen Gallagher, executive director of the Massachusetts Down Syndrome Congress.
“Fragmentation is not good for anyone,” noted Debora Spano, media and public relations manager at UMass Memorial Medical Center in Worcester. “The UMass Down Syndrome Program is the way to maximize the benefits to the patient and family with a multidisciplinary approach to the child's needs.”
Often, several doctors can meet with the family at the same time, which allows the various specialists to talk together about the child's needs with the family.
The program is run by Dr. Beverly Hay, director, and Co-Directors Dr. Errol Mortimer and Dr. Penny Feldman. Gwen Sokoloff is the program's dedicated Nurse Coordinator.Coordination is key
“Gwen is committed to this program, personally and professionally,” Spano said. “She has already made an impact on families lives.”
Sokoloff is mother of a young woman with Down syndrome, which means she can easily understand the parent and family perspective as they try to be sure their child gets comprehensive care. In her role as dedicated care coordinator, she removes an incredible amount of stress from parents because she communicates with all the doctors and specialists to schedule appointments, direct follow-up questions, and provide parent support.
“A Down syndrome program becomes a sort of community,” Sokoloff said. “When I moved from one state to another, it was the Down syndrome program that helped me make connections with other parents and families in the area.”
Sokoloff serves as the central point of contact for many doctors to establish a coordinated-care approach to the medical needs of participants in the program. These doctors see patients across a broad range of specialties, including:
• Audiology/ear, nose, and throat
• Developmental and Behavioral Pediatrics
• Pediatric Nutrition
• Pulmonology/Sleep Center
• Social Work
• Other subspecialties as needed.
According to Sokoloff, the program has been in the hearts and minds of doctors at UMass for years. Drs. Hay and Mortimer ran a joint genetic/orthopedic clinic for about five years. The idea for a comprehensive care program for children with Down syndrome came out of that clinic, she said.
“Dr. Mortimer was the spearhead and had been talking about it for years. He talked with representatives from the Massachusetts Down Syndrome Congress and some legislators. Another patient's father was also active in promoting the concept,” Sokoloff said.
Mortimer's collaboration with the MDSC was significant to the creation of the new program.
“We worked closely with UMass to help them establish a clinic there, and in the first year of services they have identified many new patients who had not been accessing comprehensive clinical care previously,” MDSC's Gallagher said.
Since the program opened its doors last November, Sokoloff has spoken with about 150 patients, ranging in age from prenatal to 61, or the patient's family member. She estimates the clinic has approximately 140 active patients.
According to Gallagher, an MDSC program, Parents First Call, encourages all families to connect with a Down syndrome clinic early to ensure their children have the best care possible. Two other Down syndrome programs operate in Massachusetts. Both are in Boston, one at Massachusetts General Hospital, and the other at Children's Hospital Boston.
The program is also a big hit with parents.
“I can reach out to Gwen by phone or email and she gets back to me in no time,” said one parent of a baby with Down syndrome (identities were omitted due to HIPPA regulations). “The staff works very hard to accommodate the fact that I have two other children at home and work with a schedule that works for me. When I have to bring my other children in with me, no one ever even bats an eyelash. In fact, they engage with my other children and help keep them occupied while we are trying to focus on JP's needs. I am so thankful for the clinic because the doctors and staff truly care for my family. I would be totally lost without the amazing people in the clinic helping me each step of the way.”
Patients even travel from other states to visit the program. “This coordinated effort is outstanding!” says the parent of a 15-year-old boy. “The dedicated nurse coordinator of the program has been a pleasure to work with! Her efforts have been a true asset to our experience at UMass, both professionally and personally. The Down Syndrome Center at UMass is not merely about coordinating the experience. It also succeeds in expanding the experience to develop interpersonal relationships, where information and resources are readily exchanged and available through a wonderful network of support.”
The program is currently funded through the state budget. According to Sokoloff, the Governor vetoed funding for the coming year, but that decision was overruled by legislators, so funding is set for another year.
The program recently brought on a social worker who will help meet the needs of families by helping with Individualized Education Plans, social activities, and more.