Partners in PolicymakingPartners in Policymaking

Testimonials

UNITED KINGDOM

Scotland

Personal Achievements of a Graduate of the First Class of Partners in Scotland

Before Partners, I was already involved in campaigning work and in involving other parents and carers in policy and planning of services. I was, however, completely unclear about what I wanted to achieve – I knew what was bad but I had not been able to envisage what was good or what was possible. I was frequently cross at meeting and angry with service providers – but not able to articulate exactly what was wrong with their approach.

Partners gave me the clarity of approach and vision to be able to see what I wanted to achieve – to imagine better – and, in lots of ways, the best way to achieve it. It was like someone taking the blinkers off and explaining what I had been going through and why. Every weekend it was like more light bulbs were being switched on in my head – it was simply great.

I have been asked to part of the local Joint Commissioning team for Learning Disabilities – which gives me lots of opportunities to use what I have learnt and to change [ where possible ]. The knowledge and information from the Partners Course has meant that I have been able to do this easily and, I hope, make a useful contribution.

Being on the Partners Course has enabled me to be able to give much more advice and assistance to other parents in the area – to value and use local advocacy schemes and ensure that no-on does it alone. With regard to education I now feel equipped to help other parents fight for what they want – and most, instinctively, know that mainstream education is what their children need – they just need someone to endorse and support them in their view – I now feel that I can do that.

Partners encouraged me, together with another parent, to set up a support group for parents and carers in this area – and more importantly not to turn the group into a monthly whining session but to make it positive. The group has gone from strength to strength – lots of parents whose children do attend mainstream schools and who felt isolated, now have contact and support.

I am a parent representative on the Children with Disabilities Planning Group – which is multi-disciplinary and now has at least 4 parents reps at each meeting. This group has also arranged consultation meeting with parents across the area – which I have chaired – again the experience and knowledge gained on the Partners course was invaluable – I felt that instead of groaning about what was provided, I was able to steer parents into considering different and ‘better' ways of looking at things – to challenge assumptions about what they wanted.

When the local authority tried to set up their parents forum – for parents of children with educational needs – they attempted [ - out of ignorance rather than malice…I think - ], despite having more than 70 parents express and interest, to take only 15 parents and put them through training and interviews and then appoint them, but only if they promised to commit a certain amount of time to getting views and representing parents other than themselves. Thanks to Partners – instead of meekly accepting that this was the way it would be – I challenged – in a positive way – their approach, and suggested that maybe, if this was a parents forum – maybe the parents should decide who represented them and how and in what way. I am now meeting the head Educational Psychologist with a view to discussing alternative arrangements for the Forum.

Finally, and I always say this when asked about the effect of the Partners course, but I will make no apologies for it, Partners gave me the freedom to love my son Douglas for who he is – and for that alone it was worth it.


"DARING TO DREAM"

by Jaynie Mitchell

I would like to talk today about Partners in Policymaking and what effect it has had on changing my family's lives.

For those of you who have not heard of it, Partners in Policymaking is a course that runs over 8 months on residential weekends. The idea for the course first came from America, where they realized before us, surprise, surprise, that parents of children with disabilities, and people with disabilities, should play a major part in how services are designed and delivered. And how we live our lives.

I was the person on the first day that stood up and said I was fed up with every one banging on about inclusion – it couldn't work for Ross.

I had tried not to think about Ross not going to school with his big brother Euan. It was just too painful. I had all those feelings of keeping him safe, protection, etc. I didn't realise it actually meant excluding him. I can tell you I was well and truly put in my place.

I phoned my husband that first night and told him I didn't want to be here. I had always thought I had a good attitude towards people with disabilities, but here I was in a room with 13 self advocates, and suddenly realized my attitude was not that good. I just didn't want to be part of that world. I now know this was because I was brought up in an exclusive society where the boy down the road wasn't allowed to play with us, and went to school in a blue mini bus. You will be relieved to hear I don't think or feel this way now. I very quickly didn't see their disabilities, only the people, and they taught me so much about how to do it right for Ross. For which I will be eternally grateful.

The very word "special" when used around people with disabilities gives us all comfort that best practice is in place. And that somehow some people are just so special that they need special units, special schools, special day centres.

I now know from the people with disabilities on the Partner's course that to them "special" meant devalued, segregated, ignored, low expectations, no friends, no money, no prospects, no life, and even sometimes abuse.

I personally felt responsible for this as I was part of a society that condones this, and I am just not prepared to let this continue to let this happen. As the months went on even I began to grasp the concept that our two sons didn't need to travel different paths from each other, just because one has labels and the other doesn't. Ross doesn't need to be bussed to a different area, he can know and play with the other children in our street, and one day he may even be invited to a birthday party. Before the Partners course I knew the services we were offered were not what we wanted, but couldn't imagine better. But as you all know, if we say no too many times you don't get anything. So you accept what's not ideal or you lose your place in the queue.

For the last few months I have been doing some freelance work around Scotland with SHS speaking to commissioners of advocacy trying to make sure some of the most vulnerable people in our society have a voice. And what strikes me again and again and again is that a lot of people don't need advocates, they only need friends. They needed to go to their local schools, be known and valued in their communities, and have friends that can speak up for them, and support them just the way our friends do for us. People's ordinary needs should be every bit as important as their special ones. Believing in inclusion is not always a comfortable place to be. I am often looked at as though I have landed from Mars, but I'm getting used to this and it gets easier all the time. I just keep remembering how amazing Ross is, and the wonderful gifts he has brought to our family.

This bit is for the parents in the audience, but the professionals are allowed to listen and learn too.

As parents I want you all to know this, and remember this any time you feel under pressure, or have doubts about your strengths.

... We have the authority – we know the child better than any one, we have more experience.

... We care more than any one else, and we have invested more in them.

... We have authority of witness – we're living it, every one else is only watching.

... Every one expects us to advocate for our child, so let's do it

... We have the legal authority – so let's use it, and use it wisely.

And I think this the most important:

... We think our children are wonderful and love them more than any one else – so let's tell every one how wonderful they are.

But the single most powerful thing I learnt on Partners was that it is okay to dream for Ross. I felt before that I couldn't do this for Ross, as we are conditioned to believe that the system has all the answers.

I would like to share some of these dreams with you now.

When I dare to dream, I have very clear picture of how I want the future to look for our family, and it no longer has anything to do with Ross meeting criteria, or making the grade. No other child has to pass a test to go to their local primary school, why should ours? Ross doesn't need to get better to go to mainstream, mainstream has to get better for Ross to go there. I think it is very cowardly to put the onus on children to fit into the existing system when we know that if we create truly inclusive schools that they are better places for all children to be.

When I dare to dream, I dream that the expertise that is currently only available in special schools, be available in all schools, so that we can all have real choices, we all have so much to share and learn for each other.

When I dare to dream, I dream that no more professionals will say that they are only considering Ross, and that he might be happiest at a special school.

Will they also be saying in 15 years that he would be happiest in a day centre?

And that it's okay if no one knows him in his community? Will they also be saying that he is happy because people can only think of him as disabled, because no one knows anything else about him?

When I dare to dream, I dream of a society that values peoples differences, and one that has the humility and grace to realise that it does not always do things in people's best interests, but it is our own shortcomings and lack of imagination or commitment that is keeping people segregated.

When I dare to dream, I dream that both of our sons to be appreciated for what they can do not what they can't, I want them both to grow up in a society that's fair and just, and I want them both to be valued for their gifts.

When I dare to dream, I dream that no other parent will get the reaction I did when I expressed our wish that Ross be fully included. I dream that children with disabilities will be truly welcomed. And no parent will ever feel as uncomfortable as I did. We now have a presumption of inclusion from the Scottish executive, so I am presuming inclusion, I am not presuming a split placement, I am not presuming a unit attached to a school, I am not presuming a school that is not our local one

I am simply presuming inclusion.

When I dare to dream, I dream of family support, that we start to think outside the boxes and ring fenced money; I often used to say that it was Euan that needed someone special, not Ross. Families know best what families need.

When I dare to dream, I dream that Euan and Ross will have school photographs taken in the same purple sweatshirts, and the school that Euan thinks is "the best school on the planet" is the one that welcomes Ross.

I want to tell you about a conversation I had with Euan when he was about 51/2. It went something like this:

Euan " I can't wait for Ross to come to my school"

I then asked "why"

Euan with an extremely condescending look on his face, the kind that only a five-year-old boy can have.

"Because he is my brother and I love him, and brothers should be able to see each other during the day".

Me: "Why else"

Euan "everyone else's brothers and sisters go to school with them, why shouldn't Ross?"

I explained to him that some people thought that Ross shouldn't go to school with him because he has autism.

And Euan said, "Well that's just stupid".

To me that says it all.

I believe that dreams create vision. Vision creates ambition. And ambition creates reality.

Good luck in following your dreams!!