The Joe Rae Trust Blog

No Wilderness

Thu, 27 Oct 2011 09:34:20 +0100

I set off to Gloucestershire last week to collect Joe for his half-term break. Joe will have been away at college for just over 40 days, but it has been no wilderness. We have visited Joe a few times and the staff at the college have been very generous and considerate with their communication, regularly updating us about Joe's progress. So I can confidently report that he has settled happily into college life. He has a busy timetable that includes: speech and language therapy, physiotherapy, aqua therapy, music therapy, course time, cookery with occupational therapy, development of life skills either out in the community or in his residence, time in the dance studio, and riding ... at Cheltenham race course!##more##

Joe also has a full social timetable. The college has plenty to offer the students on campus: a cafe, a bar, a weekly disco but additionally Joe has been on day trips t Gatcombe Park, Longleat and regular visits to the bowling alley. My only concern was that he wouldn't want to come home!

The fact that Joe has adapted so well to residential college life is in part due to Joe's readiness for such a challenge but it is also due to the staff at the college who have welcomed him with enthusiasm, professionalism and compassion. Enrolment day seems quite some time ago now but it has to be noted as one of the best days of my life.

We were all so excited, especially Joe who was giddy and grinning all the way from Cheshire to Gloucestershire. Naturally, I was anxious about the moment when we would have to say goodbye - but I needn't have been. Joe took it all in his stride and it all seemed so right, so normal ... a 19 year old boy going to college. Made me wonder what all the fuss had been about, why it had been necessary to battle hard and long to achieve this outcome? As we left, I looked back at Joe sitting in his bright room listening to The Bombay Bicycle Club, he looked so grown up. I was so proud of him ... the courageous, peaceful, patient Joe Rae who got to go to college.

On the journey home, Joe's sister said, 'Mummy it feels like something really good is happening in our lives.' I couldn't have put it better. So whatever part you played in helping me make this happen for Joe ... thank you. With special thanks to the remarkable Linda and Hilary for their steadfast freindship, kindness and support.

The first of September - the beginning of something

Fri, 02 Sep 2011 17:08:29 +0100

This time next week Joe will be on his way to the National Star College in Gloucestershire. It feels just great to be able to write so positively about Joe's future.

I am grateful to our local authority for eventually agreeing to give Joe the opportunity to further his education. However, the people who I am most grateful to are: my family, my friends, my local community and the many strangers who placed their trust in me by supporting the campaign with kindness and generosity. Their trust helped me remain steadfast to what I knew was right for Joe. Their trust reassured me and gave me the courage to keep going. My heart-felt thanks to you all.

When our postman delivered the 'New Student Information Pack' from National Star College it was indeed a red letter day for Joe. It meant that Joe was part of something. In common with other 19 year olds up and down the country, Joe could begin making preparations for college life - he was included.

However, I am sure that many parents will recognise that there are mixed emotions felt when a child prepares to leave home for college or university. For the child it is the beginning of something exciting, something promising new horizons ... but for parents the excitement is also tinged with a little sadness ... the right sort of sadness. It is the sadness of letting go and allowing your child the freedom to lead their own life away from home. Obviously for Joe it is not a straightforward transition but nonetheless he has every good reason to try.

The Joe Rae Trust will continue to fundraise but for the time being the pressure is off. Money already raised will be used to enhance Joe's college experience. Fundraising events are already planned and will take place over the next twelve months. Joe still needs friends, so please keep an eye on the website for news.

Ten days ago I walked a challenging 53km across Scotland from Inverlael on the west coast to Ardgay on the east coast. It was a long, tough walk through stunningly beautiful landscape. My four hail and hearty walking companions made it a very special experience. It has been an extraordinary year and the highland hike felt like physical punctuation ending the first chapter in the story of The Joe Rae Trust. We are now at the beginning of a new chapter.

Good Luck My Dearest Joe.

Listening to Joe

Fri, 01 Jul 2011 16:04:10 +0100

Joe cannot speak so I am his voice. Being Joe's voice does not mean putting my own words into his mouth. Speaking on Joe's behalf is a responsibility I take very seriously. So before I speak up for Joe, I give a great deal of respectful consideration to what Joe might say if he had a voice of his own. I draw on my experience as a mother of three, my experience as a carer, I use common sense, occasionally a process of elimination, I use my intelligence and my instinct. I also talk to Joe but above all I listen to him.

Joe leaves school in less than three weeks and I hear him saying, like any other 19 year old, 'What's next?'.##more##

For Joe's sake, I very much hope that 'next' will be the opportunity to continue learning in a youthful environment. Somewhere that identifies his further potential and has the multi-discilpinary expertise to encourage him to develop his communication, mobility, and life skills. Complex learners like Joe are expensive. From the moment Joe struggled for his first breath, society would define his life by cost. No-one knows better than Joe the true cost of being disabled - we just witness Joe's disability but he lives it.

It has been established that there is no suitable college for Joe in the county where we live. For Joe to attend a place somewhere else in England, our local authority would have to fund it. Funding is not straightforward because his complex needs require support and funds from three disciplines - clinical services, social services and education. It is a very complicated system of assessments, reports and panels. As a parent I have found the process almost unfathomable. One would imagine that all three departments would sit down together with Joe's needs central to the discussion. In my county it does not appear to work in that way.

My understanding is that even if the education panel sanctions an out of county placement, it can only offer funds for the education element. It then has to put a case to the social care panel for the residential element. As far as I can gather, social services are reluctant to engage in this because they feel they are able to provide more cost effective services for Joe locally. They mean a day centre.

Joe's Dad and I visited the day centre recommended by social services. We went with an open mind. It is a place run by good and dedicated people but at this stage in Joe's life it is not suitable. Amongst other things it is not age specific. The age range of the 'service users' is 19 to 80! If Joe had a voice I am pretty certain that he would say 'Please Mum, not this next'.

This is the point where no matter how well I articulate Joe's case, no matter how loudly I shout, I feel my voice for Joe is diminshed. I do not have any sense that what I say counts. It is very scary standing up to the might of my local authority.

Two weeks ago I had the impression that Joe's new social worker really understood why we felt so strongly that the local day centre would not be right for Joe at this stage in his development. The optimism I felt after that meeting was short lived and I don't mind admitting that I have had one or two bleak days since. These are difficult times and there are budgets to be protected. It was ever thus for Joe and many people like him. It's odd that the very people employed to safeguard and promote Joe's well being are the ones who most make me feel like Joe is a burden on society ... and perhaps that it would have been most cost effective of all if Joe had not struggled for that first breath.

But he did make that first breath and he is here and he is not going away. And nor am I. I doubt that I am the county's favourite mother - but I am not looking for a best friend, I am looking for best practice.

In direct contrast to the months of constant and frustrating battles with my local authority, the fundraising campaign for the Joe Rae Trust is a creative and positive approach to a funding problem. It is uplifting to be part of it and because of the many affirming messages of support I feel I can carry on making the case to my local authority.

Thanks to the journalist Carmella De Lucia who has written supportively about Joe in this week's country edition of the Chester Chronicle.

Continued thanks to all of the family, friends, neighbours and strangers who have donated £3 (some considerably more). You are investing in the next stage of Joe's life and I am really grateful to you all. You are hearing this story from me but you are most definitely listening to Joe. Thank you.

Doing for Joe

Mon, 20 Jun 2011 12:56:38 +0100

A few weeks after Joe was born, Joe's dad and I were settling him back to sleep after one of the alarming choking episodes that would be a feature of the early months of his life. As Nick, Joe's dad, cradled the now peaceful Joe in his arms I asked 'What will we do if Joe is disabled?'. Without hesitation Nick replied, 'We will just have to love him more'.

We soon realised that love is a 'doing' word and as any parent of a child with disabilities knows, there is never a shortage of things to do. We would have to 'do' a great deal of loving to try and make Joe's life as good as it could be.

Since the launch of the fundraising campaign many people have been 'doing' for Joe. People offering to climb mountains, walk the Ridgeway, run marathons, even write a children's book. By Tuesday of last week I was quite simply lost for words - which has got to be a first! Messages of support and encouragement continue to come in and we thank everyone who has been generous enough to invest in Joe's future by making a donation to the fund. There is now £3700 in the account which is just great.##more##

I can also report that last week there was a flurry of activity from our local authority about the question of funding. On Wednesday an occupational therapist and Joe's new social worker came out to the house to discuss Joe's post school options. it was a positive meetng and we worked hard together with Joe's needs central to the discussion. Of course, it doesn't mean that the local authority have agreed to fund a place for Joe. But it does mean that for the first time in almost a year they seem at long last to be prepared to consider the possibility.

Butternut squash

Fri, 10 Jun 2011 17:11:54 +0100

Asking people, and more specifically, strangers, to donate money to a cause is tricky - not least because there are so many good causes. It's especially tricky if, like me, you were brought up never to discuss money. So if I intended to raise this vast amount of money for Joe then I needed to find a way to stop apologising for asking.##more##
Help came from a group of undergraduate students at a university in Liverpool. I had been invited by one of their lecturers to take part in a seminar about disability. The students, most of whom were only a year or two older than Joe, were a feisty group and I learned a lot from them. They were interested and very supportive of what I was trying to do for Joe. There was one fabulous, red-headed student who decided to give me some advice in the no-nonsense style of a Scouser. She said, 'Mrs Rae, £3 is nothing. People pay more for a butternut squash. Loads of people will want to help Joe once they know his story. It's your job to tell it - you just need to get over yourself.'

I am not quite sure why she chose of all things a butternut squash as a comparison to a residential placement in Sussex but she certainly helped me 'to get over myself'.

A mountain to climb

Fri, 27 May 2011 13:26:12 +0100

I knew from previous experience that my local authority would be reluctant to fund out of county care or education for Joe. I was bracing myself for the inevitable hard work and battles I would have trying to persuade them to give Joe the chance to continue learning in another part of England. I needed my local authority to recognise, applaud and accept the fact that a place existed in Sussex that would give Joe the right support. It provides innovative clinical services and respectful personal care in a youthful campus-like environment and with all the usual social, leisure and learning activities that 19 year olds might expect from a 'university' experience. I hoped to enlist the help and support of Connexions and Joe's social worker who, in theory, would be his ally.

It seemed so unlikely that my local authority would fund Joe's out of county placement, I was going to need a plan B. It was now September 2010 and Joe had just gone back to school for what would be his last year of secondary education. I drove the short journey over the border into Wales, to my favourite mountain, Moel Famau. It's not a high mountain, but it's high enough to make the walk to the top challenging. My mind was racing. Where on earth would I find £238,000 to fund three years of post-secondary education for Joe? By the time I had reached the top the walking and the views had worked their magic - I fet calm and my head had cleared. True, it was still an eye-watering amount of money, but I decided to do what primary school children are taught to do with daunting numbers - I chunked.

Chunking means breaking a sum down into more manageable numbers. So rather than 1 x £238,000, how about 3 x £76,000? Or £3 x 76,000? That was it, I had a plan. I was going to ask 76,000 people to donate £3 each.

Family life

Tue, 24 May 2011 12:09:59 +0100

I remember the frenzy of activity when Joe's older brother was planning his post sixth form education. The endless re-writes of the personal statement, UCAS deadlines, the trips to London, Oxford and Glasgow for university open days, portfolios being delivered (just in time) to various departments, the agonising weeks of waiting to hear. Then jubilation when I read the text 'Mum, I got in'.

For the parents of able-bodied 18 year olds, post secondary education feels like the beginning of the rest of their son's or daughter's life. It is exciting. By comparison, for the parents of disabled 18 year olds it can feel like the beginning of the end of their son's or daughter's life ... it is heartbreaking.

It has been pointed out to me that further education is a not a right but a choice. I agree, but as Joe's parent and carer I would not be doing my job properly if I did not find a way to give him that choice. I would like Joe to have a fair opportunity to participate just like other sixth formers, to have the chance to continue learning so that he can prepare for the next stage of his life.

Twelve months ago I was told that there are no colleges in our county that would be able to provide appropriate further education for a complex learner like Joe. So the obvious thing to do was to look outside of our county, or so I thought. I did my research and found three places and made appointments to visit. All three were impressive. However, the one in Sussex stood out as being best able to meet Joe's needs. When the letter arrived offering Joe a place I could hardly read it through tears of relief and joy. It was Joe's turn to say 'Mum, I got in'. At last Joe was part of something, he was valued and his potential had been identified.

Finding the college was one thing. Funding it was going to be quite another.

Welcome to Edel's Blog

Sat, 21 Aug 2010 20:57:24 -0400

I am going to try to and tell the story of raising funds for Joe's education through this blog.

You are very welcome to comment on what I write but like many fellow bloggers, I will delete posts that are not relevant, or unkind.

Thank you for visiting the site.