By Charlene N. Rivera-Bonet, Waisman Science Writer
The clinics and the research laboratories of the Waisman Center intertwine to care for individuals with cerebral palsy. The mission is one: to improve the outcomes for individuals with cerebral palsy. Because of this, finding novel interventions and advancing current care remain at the forefront of work done by researchers and clinicians at the Waisman Center.
Cerebral palsy, the most common childhood motor disability, is a group of neurological disorders that can affect an individual’s ability to move and maintain balance and posture. It is caused by damage to the brain before birth or during infancy that impacts a child’s ability to control their muscles. Up to one-half of children with cerebral palsy may also have an intellectual disability.
Kids with cerebral palsy may need comprehensive care and support due to the nature of their symptoms, which can impair movement and coordination, speech and eating, and development. The Waisman Center’s Cerebral Palsy Clinic is an interdisciplinary team of clinicians that work together to provide comprehensive care and support for children with cerebral palsy and their families.
Cerebral palsy care at the Waisman Center
The clinic team is composed of two physicians, a physical therapist, an occupational therapist, a nurse, and two speech-language pathologists – one for feeding and verbal communication and one for communication aids. “We’re really looking at the child as a whole. And I think that having all of these varied areas of expertise can really help give that best recommendation for the family,” says Melissa Villegas, MD, a pediatric rehabilitation medicine physician and director of the clinic. “We all have different skill sets and experience, and we can bring those together.”
Villegas describes the clinic as a rehabilitation-based clinic, rather than a medical specialty clinic. The focus is on helping kids continue to make progress with developmental milestones, ensuring they have a method for getting around that best works for them, and making sure their home is comfortable and adapted to them. But they also are a resource to those supporting kids with cerebral palsy. They teach caregivers strategies to safely take care of their kids, get them connected with resources in the community, and make sure they are getting the right services at school. The clinicians also work with families to address any potential goals they set for their kids, such as getting adaptive equipment.
“Certainly, participation is our ultimate goal for the children. And that looks different for every child, but we really want to help them participate in their lives at home, their lives at school, and their lives in the community,” Villegas says.
The Cerebral Palsy Clinic also collaborates with other clinics at the Waisman Center to provide the best integrative care. One of their closest collaborators is the Newborn Follow-up Clinic, from which a portion of the kids seen at the Cerebral Palsy Clinic are referred. Babies born with a risk for cerebral palsy are often first seen at the Newborn Follow-up Clinic. The clinic provides assessments, diagnostic evaluation and treatment recommendations. When kids with a diagnosis of cerebral palsy reach the age of three, they are discharged from the Newborn Follow-up Clinic and move into the Cerebral Palsy Clinic. Other kids are also referred by providers outside of Waisman. The Cerebral Palsy Clinic currently sees approximately 175 kids.
Abygail Marx, MS, CCC-SLP, who is part of both the Communication Aids and Systems Clinic (CASC) and the Cerebral Palsy Clinic, brings her expertise in alternative and augmentative communication (AAC) as a speech-language pathologist. AAC refers to all the ways that someone communicates besides talking. “Cerebral palsy often impacts motor skills, and it also impacts the motor skills of your mouth, and your tongue, and your vocal folds, and all of those pieces,” Marx says. “Being able to get those muscles to move how and where you need them to, to make the different sounds correctly with speech is one of the biggest and most visible impacts of communication for people with cerebral palsy.” Other kids that have an injury affecting the part of the brain involved in producing and understanding words can also have difficulties with language. Research suggests that 60% of children with cerebral palsy have communication challenges.
At the Cerebral Palsy Clinic, they identify speech and language difficulties and provide support within the context of the clinic. However, some kids may need further support, and are referred to either their local clinics if they live far away, or CASC. CASC also sees kids with cerebral palsy that are referred from other clinics.
At CASC, a team of speech and language pathologists and an occupational therapist figures out what model of AAC works better for the individual based on their language abilities and motor skills. They also help the individual and their family learn how to use the tool.
There isn’t a minimum age to begin supporting communication in kids with cerebral palsy. “Overall, as we think about kids with cerebral palsy, one of the things that’s so important is early intervention. And that recognition that even if they don’t need supports long term, it’s better to put the supports in place when they’re young,” Marx says.
Support through education
In addition to the clinics, the Waisman Center is also committed to supporting individuals with cerebral palsy and their families through education. The Waisman Center presents six community Day with the Experts educational events on cerebral palsy, augmentative and alternative communication, and other intellectual and developmental disabilities. Experts in the field, including researchers, clinicians, and a panel of individuals and family members share their experiences and expertise with attendees. All events are free and open to everyone.
The University Center for Excellence in Developmental Disabilities (UCEDD) and the Southern Regional Center for Children and Youth with Special Health Care Needs (CYSHCN) at the Waisman Center also provide support for individuals with cerebral palsy and their parents by providing trainings and information, and connecting them to community resources and services.
The Cerebral Palsy Hub displays all of the efforts put in place at the Waisman Center to better support individuals with cerebral palsy and those who care for them.
Tune in for our next story to learn about cerebral palsy research at the Waisman Center.
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