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Video: Sharing the Challenge: Partners in Policymaking

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Narrator: The people you are watching come from all walks of life, from cities, small towns, and rural areas. They are of varying ages, ethnic groups, and economic circumstances. They are ordinary people who have something in common. They all lead lives that present extraordinary challenges. Each of them either has a disability or is the parent of a child with disabilities.

This weekend, as they will for eight weekends, they are making time in their busy schedules to participate in a unique program. It's a program that will ultimately lead to fuller, richer, and more productive lives for themselves and for their children.

They will become active partners - partners with community organizations and agencies. Partners with federal, state, county, and local government. Partners with schools, partners with employers, but perhaps most of all, partners with each other. They are all Partners in Policymaking.

In the next few minutes, you'll see and hear how this incredible program is helping them and thousands more who have come before them to effect positive change, both for themselves and for their families.

Narrator: Sharyl Downwind is an Ojibwe Indian. It's Friday night, and it's the start of a Fourth of July powwow that brings together Native American families from miles around this northern Minnesota community for three days of fun and celebration. She is getting her children ready for the big night, but Bradley is special. After a difficult birth, doctors told Sharyl and her husband that he would likely never walk or talk. The doctors were wrong. Today, at the age of 6, Bradley can walk and talk and dance. Thanks in part to his family's knowledge of the resources available to them, Bradley got the help he needed early in life to vastly improve his future. Tonight, he and several other Native American children with disabilities are taking part in the powwow. Sharyl says the discovery she made through Partners in Policymaking opened a whole new world of opportunities, not just for Bradley, but for her entire Native American community.

Sharyl: I really believe that that the Birth to 3 Program was responsible for our son walking and talking today. I felt really strongly about it and I was looking around in our community and our relatives and friends and seeing that a lot of people aren't getting physical therapy, occupational therapy, special education help for infants zero to 3 or even into school age.

Narrator: Today, Sharyl leads a community program for other Ojibwe parents and kids who need help finding the resources they need to cope with disabilities.

Sharyl: I decided to call this part of the program Our Children are Sacred, because we really feel that about our kids, especially our kids that have any kind of special need. And one of the things that I knew that we needed to do was to make it local, instead of making people travel a long distance, bring it into the community to a place that was easily accessible for them. I feel like we've been successful in that. Not only have we had people consistently come for the whole sessions for the whole year, but the first year we had three people out of our group sign up for Partners and go through and graduate from the Partners program. And I think the ideas behind the Partners program are fantastic and the things that the Native community can really use. So our hope is that, we are going to spread, just like Partners did when they first started.

Narrator: Sharyl Downwind's experience serves to illustrate one of the key objectives of the Partners program. Partners are active. They extend what they have learned to others, and they make positive change happen. Whether they live in a large city, a small town, or in a rural area, people with disabilities are entitled to receive the services and technology they need to reach their potential. They're entitled to receive these services within their own communities. It's the law. Yet, because the system for delivering those services is so complex and because they and their families lack the knowledge of what's possible, people with disabilities are often not getting the help they need. Learning what is possible and how to make it happen is what Partners in Policymaking is all about.

Annette: My name is Annette Aaker. I'm from Kandihohi County.

Narrator: It's about empowerment. Extending to people with disabilities and their families the skills, the information, and the tools needed to access the system. And when the system isn't responding, to change the system. The focus in the Partners program is kept on achieving four key outcomes: Independence, inclusion, integration, and productivity for all Partners and their family members.

Narrator: Gunnar Dybwad is an advocate for people with disabilities and one of the guiding lights behind the development of Partners in Policymaking program.

Gunnar: Partner in Policy Making has been, in my experience, extremely effective in creating a new type of leadership in our communities, a leadership of plain people who may appear quite insignificant but who through the techniques they have learned in this program are now able to exert quite some influence because they know the right thing to say to the right people at the right time. And they know where to get help and how to join others. What kind of means to use or not to use. To know what the person you want to communicate with is apt to listen to and to avoid things which will only turn them off. Those are things I think we have been quite successful in teaching.

Narrator: Since its founding more than a decade ago, the curriculum followed by the Partners in Policymaking program has continually evolved and improved, drawing heavily on the experiences of past participants and on results. Today, the model Partners program consists of 128 hours of instruction time delivered over eight weekends spread over one year. Naomi Beachy is a program coordinator. She has conducted five classes during her three years with Partners. She says the emphasis must be on consistently maintaining a high quality program.

Naomi: We really believe that we must adhere to the best practices, state-of-the-art practices with the participants, with the speakers, with the facilities. We want it to be quality. The Partners participants do make a commitment of attending all the sessions and, likewise, we also make a commitment to them that their time will be well spent. We expect the best from our participants because we provide the best.

Narrator: In each session, experts in specific areas present and interact with participants. The program is comprehensive and sequential, covering eleven curriculum areas. Among these, partners learn how the history of people with disabilities in our culture and society affects the present and the future. How children with disabilities can be successfully educated as equal participants in regular classrooms at the neighborhood school. How services provided by state and local government are coordinated and delivered. How the state legislature works so Partners will be more effective advocates and lobbyists. How assistive technology and proper positioning can make the difference between dependence and independence. How real employment for real wages can be achieved is a right and contributes to the goals of inclusion, integration, and productivity. How to organize in the community to advocate and to make effective use of the media. And finally before graduation, participants are taught parliamentary procedure enabling them to more effectively influence the policies that will affect their futures and training them to provide leadership in the organizations with which they will become affiliated. Naomi Beachy says that the transformation she has seen take place in the lives and attitudes of Partners graduates is nothing short of astounding. What results has she witnessed?

Naomi: The main piece that I've seen is the growth in people and the difference their lives have made for others. The enthusiasm that they leave with, that they can conquer anything. They become a network of people. Every class that graduates is that many more Partners grads out there making a difference in their communities and it is something that we really encourage them to do. This program is not only for them; that's a side benefit. But it's challenging them to go back to their communities to get involved. And that's the most important thing there is because that's how systems will change.

Narrator: Earlier, you saw how Sharyl Downwind's experience in the Ojibwe community created change and new opportunities for her people. Now, let's meet some other Partners graduates and their families and see close up what they have achieved. Fifteen-year-old Aaron Westendorp lives at home with his family. He was born with multiple disabilities that require 24-hour medical supervision. Aaron's mother, Krista, was determined to keep Aaron at home but couldn't find the resources she needed.

Krista: There wasn't a home care agency at the time that cared for children and we just had to find resources and it was way more difficult than we thought it would be. So, we navigated through the systems as well as we could, but I realized that we really needed more information about how the systems were set up. And I needed to be able to talk to people who had had problems similar to ours and navigate in the system, and Partners was just the thing for me.

Narrator: The result is that today, Aaron has the equipment and medical care he needs to function appropriately at home, at school, and in his community. And Krista has the knowledge, skills, and network relationships to make sure Aaron's needs continue to be met as he matures and becomes and adult.

Narrator: Brian Heuring is a self-advocate who has recently completed the Partners program. He currently lives with his parents but his goal is to live independently in his own home or apartment. His mother says that Partners has given him the confidence he needs to be independent.

Sharon: Before Partners, he was very content in letting me make his phone calls, appointments, speaking for him, doing all the work for him, his book work. And since Partners, he gained a lot more confidence and wants to take that over now.

Brian: I'm more assertive than when I started. I set up an appointment with somebody and then I went in and told the person I have an appointment with that person. I did that with no help.

Sharon: He has become more assertive and confident. Again, because the people associated with Partners, they gave him information. It's also the way they treated him. They treated him with respect. They gave him credit and complimented him for the knowledge that he had and his insights.

Narrator: Ordean Rosaasen and his wife Kelly are adults with disabilities. They live in their home and are proud of the independence they have achieved. When Ordean was accepted into the Partners program, he says was really excited. He wanted to start a people-first group together with others of similar backgrounds but he didn't have enough confidence. He hoped Partners would help.

Ordean: It made me stronger. I have more confidence in myself right now.

Narrator: Enough confidence that he and Kelly are the leaders of a group that meets regularly and have even formed a drill team.

Narrator: Deborah Harris is the mother of three boys and is currently involved in a Partners program. Her 6-year-old Josh has multiple disabilities.

Deborah: What's been really encouraging for me is to get to know the people who come to Partners who are self-advocates. And I'm just so proud of them that they're taking that step and it just gives me hope for my own son. I know that he probably won't be advocating for himself at the level that they are, but it just makes me know that, you know, perhaps life can be so much better for him.

Narrator: At first, she says she was skeptical of how much the Partners program could really help. Now, Deb says that each and every one of the Partners sessions has taught her something that has had a direct impact on Josh's quality of life.

Deborah: One session was on inclusion and IEP and the IDEA, and that was about the time when we were trying to advocate for Josh to have a free and appropriate education. We were told we couldn't send Josh to school without providing a private duty nurse. So we really organized. We got the entire school district to change their policy because prior to that they had a policy in place that they distributed to all the schools that said that the school nurse would not do anything that wasn't… wasn't determined to be like typical cares for children so they left out a whole category of children with special needs. So that policy was not legal and we changed it.

Narrator: Like Deborah, many Partners graduates have learned that becoming a knowledgeable advocate really can effect positive change, both in official policy and perhaps even more important in attitude. Minneapolis representative and veteran state legislator Dee Long says that meeting Partners graduates and hearing them testify put a human face on what were up until then simplify abstract issues.

Dee Long: I think what, what really was important to me was the fact that I learned that these were real people with real stories behind the issues that we deal with every day sometimes in the legislature. I was able to really for the first time have a good comprehension of what our decisions could do in impacting people's lives.

Narrator: Most of the Partners you've seen in this program will tell you their thinking has truly changed as a result of their experiences over their eight weekends. A policeman, Pete Dobransky, and his wife Donna are the parents of a son Daniel with multiple disabilities. Pete says Partners has helped him change the way he thinks.

Pete: You walk away with a different way of thinking. Most people, I think, probably get into it for their own personal reasons, whether it's a family member or a close friend or whether it's a self-advocacy issue. But you walk away looking at the bigger picture of what you can do to try to change the whole system the way it is now to benefit everybody in a better way. I strongly recommend Partners to anybody who's thinking about going through it. It just gives you the tools to make some differences. I was a big one with all the excuses ahead of time, you know, not having enough time, that type of thing, not being able to make the commitment, but it's well worth it. The amount of tools, information, contacts, knowledge that you walk away from the program with can just help your own personal situation and that of other people that you're going to meet in the future.

Narrator: As you have seen, Partners in Policymaking is not just about helping yourself and your family members but about helping entire communities to change their values and attitudes about disabilities and ultimately their practices. Partners is built on critical values relating to the inherent worth of people with disabilities always adhering to the principle that people with disabilities are people first and are entitled to the same rights and privileges as all citizens. In a few weeks yet another group of Partners in Policymaking will graduate, return to their communities and become active, knowledgeable, and effective advocates for people with disabilities. You and they will join a growing movement that is gradually but surely changing for the better the lives and futures of all of us.

Deborah: I feel like I'm more empowered because I... It's fine to have the zeal that you need to be an advocate but you need more than that. You need to know what you're talking about.

Pete: It gave me the tools, the knowledge, the power to kind of work within the system.

Krista: I've written a lot of letters to legislators, both state legislators and federal legislators, and basically I just simply tell our story, what we've done that works, and what we need as far as human services policy.

Ordean: You will learn a lot of stuff and you meet different people and meet people, different speakers, and they will tell you what's out there for you.

Sharon: There's always hope, there's more hope. And when we lose hope on those days, we feel defeated, there are people we can call for support, people from Partners that we can cry with and that they will encourage, they will understand. And they may give us more names to call.

Sharyl: In this area, in this community, now we have eight people that have come out of Partners in Policymaking and instead of just one person going into a tribal council meeting or a school board meeting, we have eight people going in there united saying, "This needs to change," makes a huge difference. I see our growth really sky rocketing because this is something that people feel real passionately about, and when you feel like you're not alone and isolated, you can really start to make things happen.