Marisa Murray, left, 38, and her mother, Nancy, work together preparing veggies for their dinner salads in the kitchen of their home in Bethel Park.
By Tina Calabro
Those of us who have family members with developmental disabilities and the need for life-long support have a close relationship with Medicaid, perhaps more than many people realize.
From an early age, Medicaid is involved with our loved ones' health and well-being. During childhood years, Medicaid can pay for what private insurance does not cover for medical needs and therapies. When our children become adults, Medicaid can fund the services they need in their daily lives.
With one caveat: Medicaid provides this safety net only if it is adequately funded. At present, it is not. And with major changes proposed at the federal and state level this year, the safety net is expected to deteriorate further.
Advocacy tools for families
• The "Legislative Advocacy" section of the ACHIEVA website (www.achieva.info) provides tools for staying informed about issues that affect individuals with intellectual, developmental and other disabilities. The electronic newsletter "Now You Know" is available on the website and by email (subscribe at email@example.com).
• The Pennsylvania Waiting List Campaign (www.pawaitinglistcampaign.org) is devoted to ending the waiting list for Medicaid services for people with intellectual and developmental disabilities.
Nancy Murray thinks about the safety net virtually every waking hour. By day, she serves as president of the Arc of Greater Pittsburgh, a component of Achieva, one of the largest local agencies serving people with disabilities. In her personal life, she and her husband, Joe, are parents to two adults with Down syndrome, Michael, 41, who lives in a group home, and Marisa, 38, who lives at home.
Ms. Murray's understanding of Medicaid has led to her appointment to a two-year term on the state Medical Assistance Advisory Committee. The group provides guidance on the provision of Medicaid services to Pennsylvanians.
She is well equipped to convey how Medicaid figures into the lives of people with disabilities or to urge the state to make a stronger commitment to some of its most vulnerable citizens.
"The state is turning the clock back on people with disabilities," Ms. Murray said, noting that the proposed 2013 budget does not address the 15,400 Pennsylvanians with intellectual and developmental disabilities on waiting lists for services, 3,700 of whom have emergency status. In addition, rates for service providers across Pennsylvania are in flux, which does not bode well.
"Nancy understands the county and state systems from inside and outside," said Barbara Sieck Taylor of Point Breeze, parent of a 21-year-old son with developmental disabilities and a former board member of Achieva. "Personally, she lives the challenges. Professionally, she has spent much of her career making sure that the support systems work effectively. She knows where to put energy and where not to put it, where to push the levers of government."
In addition to her tenure of more than a decade at Achieva, Ms. Murray, 59, of Bethel Park, has served as Western regional director of the Pennsylvania Office of Developmental Programs and as director of the Down Syndrome Center of Children's Hospital of Pittsburgh of UPMC.
She is also a longtime board member of the Arc of Pennsylvania, historically a major player in improving policy for people with disabilities. In the 1970s, Pennsylvania Arc sued the state for its failure to educate children with disabilities. The success of that legal challenge set the stage for the federal Individuals with Disabilities Education Act, which ensures the right to education for students with disabilities.
In large part due to Ms. Murray's leadership, Achieva maintains advocacy initiatives focused on improving the quality of life for people with disabilities. Recent campaigns have focused on dental care and women's health. Educating family members to advocate -- and people with disabilities to be self-advocates -- is another effort that reflects Ms. Murray's influence.
Tom Mitlo of Plum is one of those family advocates. His soon-to-be 21-year-old daughter Maggie, who has Prader-Willi syndrome, will graduate from school-age services in June and has not yet been approved for Medicaid funding for adult living arrangements.
For three years, Maggie has attended a residential school because behaviors related to Prader-Willi syndrome, such as obsession with food and intense anxiety, made it difficult for her to function well at day school or at home.
When school-age services end this summer, Mr. Mitlo and his wife, Jan, would like their daughter to live in a small-size adult residence. But they don't know if that will happen because Maggie is one of the 3,700 people with intellectual and developmental disabilities on the state's emergency waiting list for home and community-based services.
Mr. Mitlo explained that experience has shown that his daughter's needs cannot be adequately met in the family home. "A residential placement is not a luxury. It's a necessity," he said.
Ms. Murray says the challenges faced by families like the Mitlos weigh heavily on her. Even more troubling, she says, is the distress of elderly parents taking care of middle-aged adults, many of whom have been on emergency waiting lists for years. In many cases, government help kicks in only when the caretaker dies.
Over the years, Ms. Murray has seen the safety net work and has seen it fail. She's had a window into the lives of hundreds of people with intellectual and developmental disabilities. Those are the views she expects to bring to the new table she'll sit at in Harrisburg.