Giraffes teach their young to stick out their necks
“Partner in Policymaking graduates are members of the Giraffe Society–they are willing to stick their necks out.” Ed Roberts
Partners in Policymaking Celebrates 25 Years: 1987-2012
It is popular to complain, “We need to get rid of government programs–they don’t work.” But if you are a parent or person with a disability, you know you can’t do it alone. You know you need help to survive.
And, maybe the question we need to ask is: “How can I get involved and make government programs work better…for myself and others?”
If you are struggling to find services and build a network of support for yourself or your young child, I highly recommend Partners in Policymaking. It is the best resource I know.
Partners in Policymaking is a program that not only works–it teaches parents, self-advocates and policymakers HOW to make government programs work.
In 1987, Dr. Colleen Wieck of the Minnesota Governor’s Developmental Disabilities Planning Council created Partners in Policymaking.
For 25 years the goal is still to create a win-win partnership between people who need and use services and the people who make public policy.
With 21,000 Partners in Policymaking graduates in the United States, and 2,000 Partners graduates internationally, parents, self-advocates and policymakers are changing the world.
Why Partners?
Partners is designed for adults with disabilities and families of young children, but some programs expand that target group.
The goal of Partners is to teach “best practices” and the skills necessary to “change systems.”
State-of-the-art information gives Partners the big picture, allows them to dream big, and gives them strategies to turn their dreams into reality.
Partners participants become competent to change their own lives, and then to work for changes that will affect others with disabilities at local, state, and national levels. Partners graduates are expected to be agents of long term change. They learn there are no “quick fixes.” They are trained to achieve long term successes.
Who are the “Policymakers”?
Policymakers are the people in government who are elected or appointed to make decisions about rules, regulations and resources. They legislate on school boards, city councils, county and state agencies and governments, federal congressional legislators, and others who shape disability issues at all levels of government.
Some Partners graduates have become elected and appointed public officials.
Partners in Policymaking is the Instruction Book
How many times have you heard parents wish, “If only I had an instruction book”?
Partners in Policymaking IS the instruction Book.
Here is a video that explains the facts about the Partner’s Program from the United Kingdom.
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Texas, 20 Years of Partners in Policymaking (2006) “It is the Power of the Dream that brings us here.” (You will love this song.)
New Classes Forming Now: The Power of the Dream
Find the Partners contact person for your state/country.
Find out the target audience for the Partners Course and if you are eligible–sign up.
If you are not eligible, see if you can still be part of the Partners network.
Everyone can take the online courses.
Here is the Homepage for the Partners in Policymaking Website. You can find contact information for where you live, you can find online courses, you can find Parallels in Time: A History of People with Disabilities and a wealth of other resources. But most importantly, you will be able to network with others who are sharing your journey.
Comments:
Any success stories about Partners? Any success stories about partnerships between advocacy groups and local leaders? Does this sound like a good idea? Who would you suggest for speakers on state-of-the-art? Do you think the power of the dream can bring people together?
Keep Climbing: Onward and Upward
All my best,
Mary
Hi Mary,
I think partners in policy making is a great idea. However, when partners happen we all know that it is an insider deal. People work to their best interest. I’d hate for a solid non-profit to get their reputation meddled, or to have policy makers tell them that they can no longer freely help the community.
I think you are right that people need to get involved. However, I think people going to government for involvement may not be the right solution. I wish we would go to each other and local businesses within our local communities to take action. I would like to see more businesses donate money to the programs created internally. The “consumer” can demand it by attacking the pocketbooks of the selfish companies. When governments link with corporations then this cannot happen. Which is why people go to government in the first place these days.
Just a thought. Thank you for the post!
Hi Ryan,
I’m not sure I understand what you are saying. Certainly there is nothing “insider’ about it. The basic premise of Partners in Policymaking is to empower the individual parents and self-advocates about “best practice.” What are the best educational practices? What kinds of jobs can an adult with a disability do? How does a “supported living” situation work?
Then as each parent and person with the disability looks at their individual situation they might say, (like my son) Okay, Aaron can’t talk with words, he isn’t toilet trained, he has some cerebral palsy and tremors in his right side, he has the label of autism and intellectual disability… (all the negative labels that the medical and education community hands out) but, I have learned that if a teacher uses the methods of multiple intelligences and differentiated instruction, Aaron could be in a regular classroom. Now, for Aaron that would mean he would need several peer buddies for his natural support (to help him get from one classroom to another) Aaron would also need the speech language therapist to help him figure out a communication system. He would also need a physical therapist to help him figure out what is the best kind of chair…. And, Aaron will need a special education inclusion specialist to work with the teacher to modify the lessons….
None of these services can be done without the professional support of people who have specialized knowledge in these fields. i.e. the speech therapist is an expert on augmented communication systems and computerized speech…. The special education teacher can be the liason between all the regular and specialists and the parents….
Since Aaron and our family has been kicked out of churches, movie theatres, restaurants… (for being noisy) and because most private and non-profits have restrictions on who they will serve (you must be toilet trained and have CP and be between ages 5-18 and live in these 3 counties) I do not want the charity of do-gooders. I want to be able to go to our school board and say, Aaron is a student in this school and this is what he needs. I will work with you (I volunteered for the school for over 20 years) and together we can make it better for all the children–with and without disabilities.
Does that make sense?
Aaron is a citizen. He has rights and privileges. My job as his parent and advocate is to help Aaron find programs and services that respect his rights and personhood.
Since I broke my wrist and hip I’ve been using the curb cuts, the handicapped parking places, the bathrooms with the rails and wider doors. When we were testifying for ADA, I was only thinking of Aaron. Now, as a “senior” I am so thankful for our government laws and regulations that give me access and I don’t have to beg each individual company’s help and charity.
Thanks for your comments Ryan–hope I didn’t go too far off tangent.
Very good response to Laura’s comment, Mary. Would that the example of local volunteer activism be representative of ALL ‘partnership’ work. Money that goes to the national capitol returns to the populace much less. Would that all$$ stay local. For the bigger picture, Laura is correct. Each good cause needs to go local, if not completely philanthropic. Look at the UK & Greece. In times of austerity, people w/ disabilities will suffer more w/o local support.
Thanks for jumping into the conversation Barbara. One of the good things about Ohio, is that we have local county Boards of Developmental Disabilities that can raise local levy dollars to help the people who live in that county. This is where the match money comes from for i.e. the Medicaid Waivers. I’m not sure of the current formula, but it used to be the Feds paid half and the county paid half for the medicaid waiver dollars. So, for instance, Aaron’s Medicaid Waiver (which pays for his residential support to keep him out of a nursing home) costs about $60,000 a year. If I understand everything right, the county pays half of that cost. (This is more confusing this year since we moved Aaron from one county to another and was the reason we had to get permission to move…). Again, this is off the top of my head and is no way meant to be accurate. Because of the high costs of 24/7 care, and the growing number of people with severe disabilities/ autism it only makes sense that we get creative about getting better and less expensive services.
I think Thomas Jefferson and the other founding fathers would approve programs like Partners in Policymaking. They strongly believed a democracy depended on educated and involved citizens.
We cannot survive forever with the federal government constantly increasing its scope, power, and numbers. At some point, either we will go from the light socialist/capitalist government we currently have to full-scale socialism/modified fascism or we will have to cut the federal government by an immense amount. There really aren’t any other options – at some point, the cost of the immense size of our government will be too high for anything else. Or we can just go broke and go down the tubes as a world power forever.
HI Laura,
Thanks for your comment. I don’t know anyone who advocates a federal government with full-scale socialism/modified facism, so no worries, that is not what we are talking about.
What I am advocating is we each take the responsibility to get involved and become a partner and a policymaker in our government.
For instance, the government spends millions of dollars keeping people with severe disabilities, who need 24/7 care, in large institutions and nursing homes when most people would rather have that money to buy the support they need in their own apartments or homes. When I was on the Butler County Board of Developmental Disabilities, I helped shape the policy that said our county was going to grow the “supported living” and medicaid waivers. By doing this we were able to improve the lives of many people by helping them have a more normal living situation (no one wants to live with 110 other people) and we were able to save thousands of dollars for the taxpayers.
As you can imagine the nursing home industry was not happy with us. But people with disabilities and their families testified, researchers showed living in the community was better for the individuals as well as members of the community–and was cheaper or equal in cost.
The good news is that because of the research and model programs the government initiated, now seniors in our country are also asking for in-home support and community alternatives rather than being forced to live in expensive nursing homes with a poor quality of life.
I have many more examples if you want. Does this calm some of your fears?
BTW: I was a volunteer on those boards and appointed by elected Judges and County Commissioners so there were plenty of checks and balances.