Having a disability or having a disabled child means that you need support. The support comes from lots of different organisations such as health, social services, education, and leisure services; trying to get what you need seems very complicated.

Who does what? Where do I go for help? Not having the information can make you angry and tired.

This is how I felt for a long time after my eldest daughter was born. She didn't walk or talk, like my other children. She needed help with everything. Getting the information I needed was very difficult. I got angry and frustrated. I blamed the people who were supposed to help, even though I really didn't know who they were.

In 1995 I began to find some answers that not only helped us but helped others.

This is the story of how this came about……..

Partners in Policymaking

In the 1980's , in the United States a woman called Colleen Wieck had some conversations with people that she worked with in Minnesota, they talked about how they could help parents of disabled children get what they need for their children. Together they designed a Course called Partners in Policymaking™. The first Course ran in 1987 and now runs in almost every state in America . In 1995 I went to meet Colleen and some of people she works with, they taught me about the Partners in Policymaking™ Course, and gave me permission to run it in England .

The second problem was that the parents and self advocates did not always agree with each other. The people making the decisions heard different messages from different groups. This lack of agreement made it difficult for any changes to happen in the services offered. Often parents and self advocates did not have the right information when they went to meetings.
They just talked about their problems, not what would make things better. Colleen and the people she worked with wanted to help, they thought that if people learned about who the people that made the decisions were and how to ask for the things they needed, if they learned how to organise meetings and do some planning, life would be better for everyone.

And so Partners in Policymaking™ was designed.

This is a Course for parents of disabled children and disabled adults. The Course is made up of eight sessions, each session looks at the things that are important to disabled people and their families.

The programme works through all the issues, giving the latest information. This gives disabled people and their families the information and confidence that they need. One important thing is the quality of the speakers; hearing from people who are passionate about social justice. By hearing from the best people, disabled people and parents who come on Partners in Policymaking™ are aware of what is possible, this helps people to dream about having good lives. Learning all of this in a place that is safe, people feel comfortable about asking questions and talking about their experiences. They learn to use a microphone, talk in public and how to have successful meetings.

Partners in Policymaking™ shows people how to ask the right questions, and how to present their questions to people who work in services without getting angry and frustrated. Everyone on the course becomes part of a network, so that they don't need to go to meetings or plan alone.

At first it was hard to persuade people that running courses for parents and disabled people was a good idea; all the training available was designed for service workers. Sometimes parents would be invited, but it was hard to understand the language and how the systems work. There were just two of us, Chris Gathercole, who had worked in institutions for many years, and Lynne Elwell , my only reputation being that I was a ‘difficult' parent.

Chris and I would not give up, we talked to lots of people about Partners in Policymaking™ and eventually we managed to get money. Several organisations supported what we were doing.

And then we had to find parents and disabled people who would come on the Course. We were looking for people who were not already known as well as the people who sat on committees or formed groups. We wanted the group of Partners to represent the community. We searched for people from different cultures, people who had very young children, some who had older children, we searched for disabled people who had learning difficulties, physical difficulties, or sensory impairments. We found 35 people.

Some of them were angry, some were tired, some bewildered. None of them saw themselves as leaders. They just wanted life to be better.

The first Partners in Policymaking Course was held in Oldham in 1996,

It was a great success, people got to hear about it in other parts of the North West . We have now had:
3 North West wide courses 1996 – 2003 - 2006
1 Greater Manchester (Oldham, Manchester , Salford, Rochdale , Bury)
5 Merseyside. (Sefton Knowsley and Liverpool )
1 Cheshire
1 Lancashire
1 Wigan and Leigh
1 Wirral

Partners in Policymaking Courses are also running in Yorkshire and Humberside, and the North and South Eastern regions. Outside of England there have been 5 courses in Scotland , 2 in Ireland . Isle of Man Partners starts in 2007. People in Wales are trying to get funding for their first Partners course.

'Partners has changed my life, not just because of the knowledge and new skills that I have gained, but it has significantly changed because of the people I have met and the inspiration, encouragement and friendship my fellow partners have given me' course graduate

I have only had experience of the medical model of disability for years it was like walking through mud.

After I did Partners in Policymaking the light came on and we discovered the social model and many friends.

What I wish for now is success in becoming self employed.

The Course covers lots of topics, encourage people to use microphones, show them how to ask questions in the most productive way, practice making presentations, rehearsing how to get their point across, and working on assignments to give practical experience.

As well as the Courses, people get the chance to learn more, about things like person centred planning, using graphics and photographs, we offer drop in session where parents and self advocates can meet and gain new information and get support. For example, writing letters, filling forms in or setting up individual budgets. We use the' scuba diving rule' – you never dive alone. Always take someone to a meeting or ask for help when putting something in writing.

We found that by bringing people together in this way, we began to develop a strong network of people who had the information they needed to help each other plan good futures. This network grew with every Partners in Policymaking™ Course.

Many of the Partners got jobs, got a direct payment, helped to bring about change by getting involved in local politics. Some people used what they had learned to help their own family, others formed support groups. Self advocates and families worked together, advocating for the children in school, to get better wheelchairs. Working together is much more powerful than trying to do things by yourself.

Other people started to ask for Courses, the next Course to be designed wasSharing the Challenge

Is for parents of disabled people over the age of 16 years and for disabled adults. Five two day sessions over 6 months.

Both Partners in Policymaking and Sharing the Challenge developed good reputations. People who provide services saw a big difference in families.

It's really useful to have people who have taken the time to understand the constraints and agendas we have to work with. Other carers are constantly destructive.”

Good working relationships began to form between some of the family members and service managers. I was asked to design a course for people who provide services. I agreed to do this if the course was for parents as well. On Kindred Spirits disabled people come as presenters and teachers.

Kindred Spirits brings together family members with people who work in social services, health services and education,

More Local courses followed, building on the impact Partners in Policymaking and, all the courses are designed based on what I learned from running Partners.

Sharing Knowledge is a Course designed for parents of children 14 – 19 years of age. Helping them to plan their future as an adult.

Lots of people are interested in the courses. In 2003, we held three National Academies, sharing with people what we have learned from investing in family leadership. The Academies focussed on Partners in Policymaking, Sharing the Challenge, Kindred Spirits, person centred planning and direct payments.

Teams of people, made up of family members, disabled adults and people who work in services were invited to come to the North West from the nine regions of England who have a Valuing People team member. The teams had the opportunity to meet course graduates, coordinators and designers of the courses. They got information about how to run family leadership courses and how to enable families to take a lead on person centred planning, direct payments and individulised funding. All the teams are at various stages of developing the courses .

The valuing people support team has created a national team, in order to support and develop the work that began at the academies. There is one post to continue to develop family leadership across the north, one for the south and the third post is to ensure that people from different cultural and ethnic backgrounds are included. The family leadership team will meet and talk to people across England and find out what people want. And what would be the best way to have their voices heard.

Lynne Elwell