New $2.5 million research center to support parents with disabilities

September 21, 2016

Child pushing man in a wheelchair.

The time shortly after giving birth is challenging for most parents—but that is especially true for parents with disabilities who face obstacles far beyond a crying newborn. They are often treated unfairly—if not illegally—by the same systems that are intended to support them, says Susan Parish, director of the Lurie Institute for Disability Policy at Brandeis University’s Heller School for Social Policy and Management. 

“The U.S. Department of Justice has ruled, unequivocally, that children cannot be removed from their parents just on the basis of parental disability, but it happens all the time,” Parish says. “That’s why we’re targeting the healthcare system, the court system and Department of Social Services workers who are on the ground, making determinations of whether parents are fit. This is an egregious social justice violation, and I think our potential to do some great work and to provide evidence is tremendous.”

Parish and a group of collaborators have been awarded a $2.5 million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to establish a national center called Parents Empowering Parents (PEP). The goal is to fill what Parish and her partners, who include other scholars and a variety of community collaborators, say is a significant public information gap.

The center will support parents with disabilities, as well as those who engage with them, through research, training and tools, including a pair of web portals that will feature resources in both English and Spanish. Projects include developing tool kits for states trying to improve their services to parents with disabilities, evaluating support structures for parents who have psychiatric disabilities, a parenting peer specialist program for deaf and hard of hearing parents and an analysis of large-scale datasets for a better understanding of the national parenting with disabilities landscape.

“We are really trying to cast the net wide,” says Monika Mitra, who is one of three co-principal investigators, along with Parish and Joanne Nicholson of Dartmouth. “What’s novel about this grant and this center is that there is not much work that has been done to create evidence-based programs that support parents with disabilities. When we started working on this grant, we realized that there isn’t anything systematic or evidence-based that you can disseminate.”

In order to create such materials for distribution, Mitra, Parish and Nicholson will rely on a diverse partnership network. “The national PEP center team includes leading investigators from across the country whose work targets parents with psychiatric, intellectual, physical and sensorimotor disabilities and the deaf and hearing-impaired communities,” Nicholson says. “PEP Center initiatives and findings will be widely shared via online venues and social media, and cutting-edge technology-based solutions will be explored to enhance the accessibility of resources and supports for all parents with disabilities and their family members.”

The PEP team includes scholars from Brandeis, Dartmouth, the University of Michigan, the University of Minnesota, the University of Illinois at Chicago, the University of Massachusetts Medical School, the Human Services Research Institute and the Rochester Institute of Technology.

“The translational aspects of our research are really important,” Parish says. “There will be lots of training, online videos and webinars. Every project is going to have a suite of different products for different audiences. This is a field where almost nothing is known empirically, and working together, we’re going to provide some greatly needed information and resources.”