Transcript: ISBA 2016: Anything to declare? - Jaynie Mitchell

Jaynie Mitchell, Director at Inspiring Inclusion (Scotland) shares the experience of her own family of accessing appropriate services and support for her son who was diagnosed with autism as a child.

Podcast Episode: ISBA 2016: Anything to declare? - Jaynie Mitchell

Category: Carers 

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

DM - Donald Macleod
JM - Jaynie Mitchell

DM The theme of today is to look at ways in which we can enable people to develop policies and practices to maximise opportunities for people to experience real choice and control over their short breaks. Today we are looking at unlocking the potential of family and friends. What are the different ways we can support people to achieve the breaks they want? How do we promote creativity against the back drop of increasing regulation and major funding constraints? What can help us to make progress? It’s my pleasure to introduce to Jaynie Mitchell who is the Director of Inspiring Inclusion and Jaynie will share her family’s experience of accessing appropriate services and support for her son Ross who was diagnosed with Autism at the age of 20 months. She is a champion and passionate advocate for more flexible person centre and services and she will talk about the before and after impact of self-directed support, particularly in relation to how this helped open up new opportunities for Ross and family to plan the breaks they wanted and achieve better outcomes all round. So would you please welcome to the stage, Jaynie Mitchell.

JM Good morning everyone and thank you for allowing me to share some of our story about what the difference utilising self-directed supports made to our family but also to some other families in Scotland, I’m going to share some other stories as well.

I would like to start by giving you a wee bit of background on our family. We live in the West Coast of Scotland in a small rural Town called West Kilbride, which I’m sure lots of you haven’t heard of but it’s very beautiful and we have two wonderful sons, Ewan, 21 and Ross, 19 but this was them when they were baby’s, when our journey started. Before Ross was diagnosed with Autism, we had a very ordinary life. I taught sewing and my husband, Willie worked as a Manager in the local plastic moulding factory. We were involved in the small Community that we lived in at that time. I was on the Community Council and prior to us having our boys we both ran the local Youth Club and we were just like any other family with 2 small children, happy but very very tired. We had to move to another area because of Willie’s work and shortly afterwards Ross was diagnosed with Autism at just 20 months old and the words that surrounded us at that time were, “we are so sorry”, “we’ve never had one so young”, “we are never expecting him to talk”, “what’s caused it”, “he will get challenging behaviour you know”, “he will stop sleeping” and “we should mourn the child that had died”, that’s my personal favourite, not. To say that we were at sea as a family is a bit of an understatement. I kept looking at our beautiful son and wondering what the future would hold. Everything I knew about disabled people’s lives made me feel very terrified of the future, not just for Ross but our whole family. Very quickly our life became about therapies and interventions, professionals that I had never known existed whose jobs I had never heard of started defining our life, all of which made me feel even more worried about what the future would hold, as none of it seemed particularly helpful but we seemed to have entered some bizarre parallel universe that we couldn’t leave. I had naively thought that an early diagnosis would bring some kind of useful support to us as a family, instead we just kept getting told, “we have never had one quite so young so we are really not quite sure what to do with him”. One person told us to come back in two years. I kept thinking there has to be a different way, but I had no idea how to do it or where to find it or find anyone else who also believed that there had to be a different way.

When Ross was just 20 months old I remember one of Ross’s Educational Psychologist calling me one day to tell me not to worry about the future as a new Respite Centre was opening up locally. I had to ask what a Respite Centre was, it wasn’t a term that I knew of and to be honest it filled me with dread his well intention call had actually had the opposite effect on us as a family. I want to make it clear that most of the professionals were good people and trying their very best to help but they were stuck in a system that was at best broken and not fit for purpose and at worse systemically believed that disabled children were a burden to their families and needed to be taken away in order for the family to function. Very quickly after Ross’s diagnosis our two sons started travelling very different paths. Ewan’s life was ordinary and full of hope and new experiences and friends and Ross’s was not. The over welling message was that he was broken and that he needed fixing and that’s something that we have never believed as a family.

I was lucky enough to be accepted on to the first Scottish Partners and Policy making course way back in 1999 before Twitter, Email, Computers all of that kind stuff and there is actually, at least two Graduates in the room, one a recent Graduate of just last year’s course and one, I don’t want to say an older, more experience Graduate, where have you, yip. Partners do changes lives. Partners and Policy making is a Leadership programme for parents of children with disabilities under the age of 18 and adults with disabilities and we run it nationally in Scotland. Unfortunately it stopped in 2005 due to lack of funding but just last year we were lucky enough to secure core funding for the next three years, so we have a new load of Graduates that just graduated in May and we are about to start again at the end of this month.

Ross was just two and a half and it was there that I was taught a different vision of what was possible and started to be the leader in our family’s future instead of a passive recipient of services. We were still fighting the system but I knew which battles to fight and I had a clear dream of what our family’s future looked like and it had nothing to with Ross meeting criteria or making the grade and that dream I had was for a future where both of our sons could achieve their dreams. When you have a disabled child no one asks you what you dream is for them and I think we all must be brave as professionals and ask, What’s you dream for you child? And I think then we may start really helping people lived ordinary lives. Because of my new found focus, Ross attended main stream school with his brother and started to have all the ordinary things happen to him too. Birthday parties, Valentine cards, lots of Valentine cards, much to his big brothers disgust, play dates, lots of children knocking on the door, coming into play because we had the biggest trampoline on the street, so that’s always a good pull if you have got young children.

I was often asked how I would know if it was working as there had never been a young person with Ross’s level of Autism in main stream school in Scotland, as far as we knew and for me it wasn’t just about Educational attainment it was about how many children said hello to Ross, how many knew him in his Community, how many birthday party invites he got and I remember asking his P1 Teacher, Ray Knox, which children from his class I should invite to his 6th birthday party and her answer was all of them. For me that’s how you measure inclusion. We had been told Ross would never make friends or function in Society but luckily no one had told him or the other children in his class. Yes Ross’s friendships are very different from his brother, Ewan’s, but they are no less valuable. It’s important for you all to know that Ross’s diagnosis of very significant Autism or as Ewan, his big brother says, “he’s got lots of autism”. So we still had all the challenges that, that brings, we were very tired, stressed and stretched very thinly, trying desperately to do the best for both of our sons and to be honest, not doing it very well most of the time. We were repeatedly offered residential respite and we repeatedly refused it. We couldn’t bear the thought of Ross feeling he was being sent away because we couldn’t cope. Somehow we muddled through the next few years.

When Ross started Secondary School we had 6 hours of very traditional support a week with a few more hours during School holidays. The Support Worker would come and take Ross out to give us a break and yes we absolutely needed a break and Ross needed a break from us as well. But unfortunately because of rules and regulations Ross couldn’t be supported to do things with his friends. They decided who supported Ross, when the support happened and we just had to be grateful for it. We were deemed then as a family with significant unmet needs because we were still refusing residential respite. For us it’s always been about Ross having an ordinary life not a special one. So we have always asked ourselves what was Ewan doing at that age and how can we support Ross to do the same thing. Ewan got to do all the ordinary things that children get to do, to get a break from their parents and their brothers and sisters. He got to go to Scout Camp, sleepovers, trips away with School, over nights at Grans, sleepovers with Aunt Fiona and Uncle Tom and Ross got offered residential respite. He could have done all of those ordinary things but it would have meant either Willie or I going with him as we didn’t have flexible support which kind of defeated the purpose.

So my question is, Do we have anything to declare and I include myself in this because I now work in the field? Are we really helping families to build relationships with each other? To build resilience to weather the difficult times, to create memories, wonderful memories that will sustain them through difficult times. To see the child as a valued member of their family with something to contribute and to help families have fun together because that’s really what it is all about for me and are we really helping children and young people to make friends with other children that share their interest, not their disability. To explore new things and have new experiences. To have fun, whatever their ability. To learn about new cultures, food, music, whatever it might be that’s why we all go on holiday. To take risks, that’s how we all learned when we were children by failing, doing things that we shouldn’t, getting into trouble and we wrap our disabled children up in cotton wool so that they never, Ross has never been grounded, that’s not good, Ewan has been grounded lots. I can’t ground him now, he’s 21, so that wouldn’t work and to have adventures and escape from their life’s for a while because I remember doing that when I was on holiday, just getting to escape.

When Ross was fourteen our Local Authority suggested that we could be part of a pilot for self-directed support and to say that we jumped at the chance was an understatement. I had been doing a lot of work in England with families who were already directing their own support and I knew that, that’s what we needed. I had also started working within Control Scotland, an organisation set up to support the successful implementation of self-directed support in Scotland, so I was really clear that this was the solution for our family. So self-directed support is just support that makes sense to me and my family. It’s an opportunity to really think and plan about what would work best for everyone and what people are trying to do. It’s not about having to fit into what’s currently there but are able to plan support that fits in to you and your family and it’s a chance to build on and enhance what you already have in your family community interest, so building stuff locally and I think people were speaking earlier about we all want change but do we really want to change and I think that wee cartoon signifies that.

Before I share what we did with our budget I would like to share some other examples of families and young people using their budgets more creatively in Scotland.

A family, who lived near me, were offered residential respite and what the mum was saying was, “yeah that’s all very well but actually we need somewhere or something and somehow that we need a break everyday”. They lived in a Local Authority house, that’s was too small but they didn’t want to move because their Community and lots of natural supports were around them, so they bought a log cabin for their garden. That meant that all the family can access that at different times, the younger children can do their homework in it, they can set up train sets, they can have cocktails, I can verify that, I’ve tried it. So it’s just a flexible space for that family to use in a way that they see fit and that’s worked incredibly well. There were lots of conversations with the Local Authority at the time, but everybody will be wanting a log cabin, it’s still the only one that I know off in Scotland. Another young person decided to buy a tent so that he could use it over and over again and he was supported by his Uncle to go away camping, so its cost £200, that was it. Another family in the Highlands decided to buy a caravan so that either the mum, dad or a support worker or any combination of them could use that whenever they wanted. Grant now goes to his grans for sleepovers with support and Amber can go and see her brother and sister in Holland and Keith and I will be sharing more about those stories in our workshop.

The vast majority of families and young people I know only chose residential respite because it’s all that’s offered but when we spend time having a different conversation about what would work best for them they generally chose something very different.

So what did we do? Well we dared to dream. Ross was given a substantial budget which for the first time truly reflected the needs of our family and took into account the need for a short break for us all. Prior to self-directed support, every year we would go on holiday as a family and to be honest I’m not sure why we kept doing. Ross had a good time, Ewan had an ok time, some of time and Willie and I came back exhausted. When Ross got his budget Ewan was already sixteen and I knew this might be our last chance to get him to come on a family holiday where we could all have happy memories and again it’s very ordinary. So we started to plan. When I work with families I always say to families think of your “if onlys” and ours were, if only we have an extra pair of hands, if only there was another driver with us, if only we had another car we could access. So we took Sarah on holiday with us and it’s the first holiday that I wasn’t desperate to come home from. We use Sarah very flexibly and in different ways each day, so it wasn’t about having Sarah attached to Ross. We used her differently so Ewan and Ross went out with her one day to give Willie and I sometime on our own. She took Ross out one day so that Willie and I could have time with Ewan. So it wasn’t about worker always being attached to the child with the disability. We managed to squeeze in one more family holiday just after Ewan’s eighteenth and now we can’t get him to come on holiday at all. But that’s ok, that’s normal.

Ross is now nineteen and has left school and our breaks are different now. Ewan goes to friends in Ireland to political events all over the country and to writers events and he is actually planning a whiskey tasting event and we go on city breaks with Ross. Ross loves to go new places where there are lots of shopping centres as he loves to draw shop logos and maps. He’s got an amazing sense of direction and memory so we have now visited every town and city with a shopping centre north of London and I’m not joking. We use the budget to rent a house and it always has to have really good Wi-Fi and if there is any parents of young people with Autism you will understand why that is and we spend the time away exploring new towns and cities around the area. Ross now has his own team of staff since he left school and again we are starting to plan different breaks for us all. We will be organising his first over night away soon and we will also have support in the house so that Willie and I can go away for an overnight and we have decided that his team can take him to London to visit all the shopping centres. It’s not about an autism holiday or a particular building, respite is not a building it’s a feeling and it’s about thinking about Ross’s passions and interests. He’s an adventurer, a photographer, an artist and his life and holidays should reflect this. If Ross could tell us, I’m sure his dream holiday would be a road trip to America, in an open top car, visiting shopping malls along the way, he would be taking lots of pictures and having his sketch book to hand, he would be trying all the burger joints and staying in a really nice hotels, with great Wi-Fi. Before self-directed support there would have been virtually no way of making this happen but now there is and I can’t tell you how happy that makes me feel.

Thank you.

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