When a child is diagnosed with an autism spectrum disorder (ASD) or another developmental disability, parents can seek interventions and resources for support. Intensive psychotherapeutic, educational, and social services can help immensely throughout childhood and adolescence. But what happens when a child gets older, their parents age, and many of those programs are no longer available? And who oversees the adult child’s care after the parents die?
Dr. Pamela Ventola, a clinical psychologist at the Yale Child Study Center (YCSC), has spent a large part of her career answering those questions. Ventola works with individuals with developmental disabilities and their families for extensive periods of time, in some cases decades.
“There are more adults than ever before with autism and other developmental disorders,” Ventola says. “Parents are often the main caregivers for adult children with these conditions. They do everything they can, but they know there will come a day when they cannot be there for their child.”
Preparing for the future
Esme Usdan ’77 and James Snyder have established an endowed fund at YCSC to help parents and adult children with disabilities prepare for the future. The Usdan-Snyder Life Planning Fund for Adults with Special Needs will create and sustain a program to work with families and caregivers, helping them develop and implement strategies for children with ASDs to navigate life through adulthood. The program will employ Yale faculty members, postdoctoral fellows, early-career investigators, clinical fellows, and clinicians. Ventola will be its first director.
Thanks to the Usdan-Snyder Fund, parents, families, and guardians of adults with developmental disabilities can receive help with coordinating a variety of services. Ventola and her colleagues will assist with securing appropriate job placements for clients, seeking and selecting home-based aides, and meeting clients’ medical needs. Staff members will also be trained to help with emotional, economic, and legal matters, such as trusts and guardianships.
YCSC clinicians will build relationships with clients and their families, guardians, and wider teams. They will have regular meetings with the client, in person or remotely, enabling them to work with families located outside of the New Haven area. Staff members will consult closely with the client’s team, including lawyers, physicians, job placement sites, and schools, and they may oversee a client’s care after the deaths of their parents or primary caregivers.
“James and I are happy to fund this program, which will enable Pam and the rest of the dedicated staff at the YCSC to help many families,” Usdan says. “There’s no greater love than that of a parent for a child, and parents of a child with ASD want to ensure a safe and stable future. This program will provide priceless reassurance and assistance to those families.”
A model program
“Our program aims to become a model for this kind of service,” Ventola says. “The needs of adults with ASD are great, and this will be the first program designed to offer comprehensive support for our clients and their families. We want to inspire others to emulate us, and we are happy to share what we learn along the way.”
The YCSC program will be a model for both treatment and education, training future clinicians and professionals. Two postbaccalaureate associates will join the program this summer, helping with the program’s operations while gaining experience to prepare for careers treating and researching autism spectrum disorders.
“We are extraordinarily grateful to Esme and Jim for their support,” Ventola says. “Their generosity will bring peace of mind and hope for families everywhere.”