Getting Rid of the “R” Word – TV Smart Talk

One of my favorite quotescame from the late Vice President and Senator Hubert H. Humphrey who oncesaid, “The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in shadows of life, the sick, the needy, and the handicapped.” Tonight on Smart Talk at 8, we focus our lens on Pennsylvanians in the shadows of life — those living with intellectual disabilities. Share your story with us at 1-800-729-7532, or email us at smarttalk@witf.org.

I came across a story last monthin the York Sunday News about an amazing 11-year-old girl in Manchester Township. Hannah Cunningham is courageous and caring, especially towards her younger sister, Leah, 8,who has Down syndrome. When other children at their school began using the word “retarded” to describe people, or situations, or things in general, Hannah stepped in and taught us all a lesson about the power of words and the bond ofsisterhood.

Hannah and Leah’s mother, Krista Cunningham, will join us tonight.

I also must credit Anne Bale, deputy press secretary at the Pennsylvania Department of Public Welfare, for encouraging us to tackle this subject. Anne wrote to us a few months ago and suggested that we explore the challenges and special gifts that Pennsylvanians with intellectual disabilities (ID) present. It is a topic we have wanted to do for many years, but for various reasons, never have. Anne wrote some compelling suggestions for areas we could address, like, “The isolation and distance often felt by these families and their children. For instance, we recently had a father talk about the fact that his intellectually disabled child was never invited to a birthday party or a play date.”

Just take a moment to process that thought: Your child, whom you love dearly, never gets to experience one of the greatest joys of childhood … going to a friend’s birthday party.

Anne further noted, “There is a movement in the last few years to better integrate people with intellectual disabilities into the community rather than keeping them hidden in institutions. Most importantly, many people with intellectual disabilities are capable of working, but getting employers to hire them is a challenge. Lowe’s Home Improvement has had a very successful program, but the opportunity for people with intellectual disabilities could be so much more widespread if people simply had a better understanding of their abilities.”

Fred Lokuta, deputy secretary for the Office of Developmental Programs atDPW, will share hisinsights aboutstate and federalresources available for families and adults living with varying degrees of intellectual disabilites. Lokuta says the Corbett administration wants to moveadults from sheltered workshops which, he says, offer an “antiquated model” for employment,to an “integrated” work environment where intellectually disabled adults perform tasks that are moremeaningfulandenables them to interact with a more diverse workforce. Thirty years ago, Lokuta notes,16,000 adults with ID lived in state institutions. Today, there are fewer than1,000 living in state facilities, as most intellectually disabled adults find shelter and companionship either with their families or in community grouphomes.Gov. Tom Corbett’s proposed budget would add $40 million to expand home and community-based services and $6 million to enable more intellectually disabled individuals to move from state facilities to community settings.

Kathy Gingerich is the mother ofa 25-year-old son, Matthew, who has autism and an intellectual disability. Matthew is non-verbal, very active and scores quitelow on a functionality scale for ID. Kathy also is an education and community advocate for the ARC of Dauphin County and will talk about the programs and services available to families and adults with ID. Once kids “age out” of the school system, she explains,it can become more difficult for them to find work, a place to live, and friends with whom to socialize.

Gingerich works with intellectually disabled studentsto help them plan for the transition from high school to life after graduation. Her son is enrolled in a day program, Neighbors, offered by the ARC of Cumberland and Perry counties. The ARC of Dauphin County has a camp that offers families some respite during the summer and on weekends. They also present continuing education classes in reading, cooking, computer, finances, and life skills.

Hannah, Leah, Krista, Kathy, Anne and Fredall make one point that bears repetition and reflection: People with intellectual disabilities want the same things we all want – family and friends to love them, a place to live, work they can do, and the chance to be happy.