Terry Mackey thought he understood the world of disabilities ; after all, he had been in the field for many years. But, until he became the father of five sons, three of whom have developmental disabilities , he didn’t really grasp the issues people with disabilities and their families face every day. As Mackey has gone from member to staffer to chair of the Missouri Planning Council for Developmental Disabilities (MPC), he has gained considerable insight.
The MPC — one of 55 such councils in the US — is a federally funded, 23-member body made up of people with developmental disabilities or their families, as well as representatives of involved state agencies. The council’s mission is to advocate for people with developmental disabilities and influence public policy that affects them. There are 4.5 million people in this country and more than 100,000 in Missouri who have a developmental disability : a long-term condition, with onset before age 22, that limits development and the ability to engage in the everyday activities of life.
“In a perfect world,” says Susan Pritchard Green, executive director of the MPC, “people with developmental disabilities would be able to work, live wherever they choose to live, access public transportation, and have systems in place to support them in their communities.” In other words, they would be included in all aspects of life, which is the reason the councils were created by Congress in 1970 by the Developmental Disabilities Assistance and Bill of Rights Act.
People with developmental disabilities know what they want,” says Pritchard-Green. “It is simply a of matter of asking.” That is exactly what the council did. In 2005, it embarked on a two-year, statewide needs assessment. With assistance from other agencies and UM, the council gathered information from 1,700 Missourians with developmental disabilities and their families through focus groups, surveys, and e-mails. From this exhaustive study, council members met and drafted a five-year strategic plan with specific goals and target dates. Narrowing down the concerns of so many people was a formidable task, but some priorities clearly stood out.
Employment was one. “People with developmental disabilities want the opportunity to support themselves, to have the dignity of saying this is who I am; this is what I do,” says Terry Mackey. “People are tired of feeling dependent on the whims of the legislature, the economy, or some organization’s budget.”
Shelly Shetley, the current chair of the MPC, agrees. “People with disabilities can work and want to work,” she says. “The problem is that most people with disabilities are on Medicaid; and, if they go to work, they have a chance of losing it. Medicaid pays for our medical expenses. Not many people can afford to lose it. But even when we do work, we often don’t earn enough to make up for what we’ve lost.”
Another high priority for council members Gary Stevens and Sharon Smith is helping the general public feel more comfortable with people with disabilities . Stevens is a self-advocate who has been on the council for eight years. He travels all over the state, meeting people and learning about their needs. He has learned a lot, he says. “People with developmental disabilities have to go out in the community. We have to let ourselves be seen, and people have to make it their business to talk to us. I’m just like everybody else,” insists Stevens. “I’m friendly; I have a good personality. Just say hi. I won’t bite.”
Sharon Smith, also a self-advocate makes very sure people know who she is and what’s important to her. Hand-lettered on the side of her wheelchair are these words: “My name is Sharon. I have cerebral palsy. I can think for myself. I like to be independent. I love God and my parents.”
To address these and other priorities, MPC has instituted a number of projects across the state.
People First is a self-advocacy and self-help organization that empowers self-advocates to speak for themselves, make decisions, and implement plans. “Like MPC members, their goals are to be included in their communities and have real jobs,” explains Joann Noll, former chair and chair-elect of MPC. “We have had people with disabilities and council members help establish chapters in several communities. Most of those organizations are still in existence, and some of them are stronger than ever. Their members have an important message and express it powerfully.”
Partners in Policy Making is an innovative leadership-training program that teaches self-advocates and family members of young children with developmental disabilities how to become leaders in their communities. The program is based on the belief that the most cost-effective and enduring public-policy decisions are made by people who use the services and who form partnerships with elected officials, school personnel, and other decision makers. Noll observes that some of the parents and people with disabilities who have graduated from this program are now powerful advocates for change in their own communities.
Missouri Developmental Disabilities Resource Center (DDRC) helps guide families through the disability experience with a network of support options, information, referrals, and volunteer opportunities. An invaluable resource for in-depth research on a wide range of disability-related topics, DRC is free to all Missourians.
Sharing our Strengths, a part of DDRC, is a support network for families, self-advocates, and professionals. “While there is one in almost every state,” according to Susan Pritchard-Green, “Missouri’s system is not just family-to-family, but also people with disabilities to others with disabilities . This is the peer-mentoring component of the program. However a person comes to us, we can set him up with the appropriate type of mentor.”
These initiatives barely scratch the surface of MPC’s statewide efforts. While the needs of people with developmental disabilities may seem daunting, they are exactly what all people want — to live and participate fully in their communities and to have a voice in the decisions that affect their lives.