by Len Lear
West Mt. Airy resident Kathy Roberson, 55, who will be speaking at the Big Blue Marble Bookstore, 551 Carpenter Lane, on Saturday, July 12, 2 p.m., has worked for many years in the area of disability policy, advocating on behalf of families who are caring for a child with special needs. A published poet and author, Roberson received her Masters in Social Work from Rutgers University and a Masters in English/Creative Writing from SUNY Stony Brook. Kathy co-authored “Keeping it Real: How to Get the Support You Need For the Life You Want,” to teach young adults with disabilities how to get the support they need to reach their goals. Here is a list of questions we put to Kathy with her replies:
• Since you are a native of Yonkers, NY, how did you wind up in West Mt. Airy?
“We moved here in August, 2013. My husband, Jody, is a biology professor who moved from Rutgers University to Temple.”
• Tell us a little bit about your daughter, Katie, who is disabled.
“Katie is 23. She ‘aged out’ of the school system when she was 21. Currently she attends an adult day program for adults with developmental disabilities three days a week, and two days a week she spends time with a companion who assists her in participating in activities in the community — like Zumba classes, going to the library and baking treats for our elderly next-door neighbor. On Mondays Katie volunteers for Meals on Wheels. She loves seeing the senior citizens and delivering their meals, and they love seeing her bright smile and getting a big hug from her.”
• Is having Katie what got you interested in disability policy and advocating for families with a special needs child?
“Yes. I decided to go back to school to become a social worker, originally thinking I’d provide case management or counseling for families who had a child with special needs. However, during my first year internship I attended a disability policy conference in Washington D.C., and became hooked on the idea of helping families by advocating on their behalf with policymakers.”
• What do you think needs to be done in this country for families with special needs children that is currently not being done?
“I think there has been a big shift in thinking about how services should be provided for people with disabilities, from an institutional/segregated model to a model that promotes full community inclusion. I believe in that ideal, but the reality of making it happen in individual lives can be extremely difficult, and families are being asked to do more and more for longer and longer. Families need help to get their family member fully integrated in the community, including residential options that don’t entail the person living with his/her parents until everyone is well into old age.”
• Has there been progress with respect to public policy on this issue in recent decades?
“Absolutely, huge progress. My husband had a great-uncle with Down syndrome who was placed in Pennhurst, one of Pennsylvania’s large institutions, in the 1930s when he was 17. He never saw his family again, and died a few years later at the age of 23 — a fact that caused my husband’s grandmother, Buddy’s sister, great sadness for the rest of her life. My daughter lives in a home surrounded by the love of family, and her years of special education, the adult services she receives and, most of all, the infinitely more open and welcoming attitudes in society, have made that possible … We still have a long way to go, including changing attitudes so that the broader society can see each individual’s strengths and gifts and what they have to offer and not just their deficits. But there’s no doubt we’ve come a long way from the days when families were told to send their child to an institution and forget about them, although sadly, even that still happens sometimes in 2014.”
• What percentage of families in the U.S. have at least one special needs child?
“According to the CDC, developmental disabilities are common: about 1 in 6 children in the U.S. had a DD in 2006–2008, and the prevalence of parent-reported DDs has increased 17.1% from 1997 to 2008.”
• What do you feel you were able to accomplish at the Elizabeth Boggs Center on Developmental Disabilities (affiliated with the Department of Pediatrics at Rutgers University’s Robert Wood Johnson Medical School) during your 10 years there to help these families?
“Among the things I’m most proud of was helping other families to find their own voices. When I was president of an advocacy organization called the Family Support Coalition of New Jersey, I worked with another family organization to collect daily ‘To Do’ lists from families of everything they did for their child from the time they woke up until the time they went to bed — and often throughout the night. The magnitude of their efforts, as well as the love that shone through despite the enormous challenges, made those lists one of the most powerful advocacy tools I’ve ever seen. We sent them to every policymaker we could think of at the local, state and federal levels with the message,’This is what our lives look like. Please remember this when you’re making decisions about cutting funding or other policies that will have an impact on our families.’”
• How did you also get interested in the issue of trans-racial adoption?
“My husband and I had two biological children and wanted a third child but were open to the idea of adoption, including children designated ‘hard to place.’ So in 1992, we adopted Katie, who was one year old, African American and had the labels ‘general developmental delays and mild cerebral palsy.’”
• Is the curriculum you designed for DD children in your book being used around the country?
“Both ‘Keeping It Real’ and the healthcare module have been used around the country, and over the years I’ve gotten some great feedback from teachers and other disability professionals, as well as parents and young adults with disabilities.”
• What would be your most basic advice to parents of a special needs child to get the support they need?
“Parents should be encouraged to tell their stories and speak up if the policies designed to help them are not meeting their needs. Even the most well-meaning professionals and policymakers can mistakenly believe that what they’re doing is making a difference in the lives of the people they’re meant to serve if those same people don’t let them know otherwise.”
• How long have you been writing poetry? When was “Moment of Departure” published?
“I’ve been writing poetry since I was a child, and many of the poems in ‘Moment of Departure’ about raising Katie were written as part of my time with the writers’ group for parents of children with disabilities that I was facilitating at The Boggs Center. The book was published in May, 2014.”
• Tell us about the writers’ group for caregivers you just started at Big Blue Marble.
“Our first meeting was Tuesday, July 1. I want to emphasize that the group at Big Blue Marble is for all caregivers, whether someone is providing care for an aging parent, a spouse, a sibling, a child or a close friend.”
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