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