Monday 30 June 2014

Wise words from Bailey about starting at a school that really 'gets' him

I love these guys at Dynamic Community Charter School in North Carolina, USA.  They are from the ‘if you build it, they will come’ stable, which as you know is one of my personal favourites.
DCCS is a charter middle and high school (UK equivalent is a Free School or Academy) for students with intellectual and developmental disabilities that uses project-based learning, individualised competency-based goals, and collaborative problem-solving to give students the best chance to live independent and fulfilling lives as adults.  Sound familiar?  The mission is very similar to that of our very own Bright Futures School.
I read this post below on the DCCS web site this morning and knew immediately that I wanted to share it (thanks to DCCS for letting me reproduce it here).  It’s from Bailey Gladden, age 15, who will be starting at DCCS in August 2014.  Bailey tells us in his own words why schools that are underpinned by these kinds of special principles and are focused just as much on social and emotional development as they are on academics are so essential for children and young people with autism.  We would be hard pressed to find what Bailey is describing in a mainstream school or even in most special, autism-specific schools in the UK.
He just nails it… on:
'My name is Bailey. I am 15 and starting Dynamic Community Charter School as a 9th grader. You should know that for the first time in a long time, I am excited for the school year to start.
For as long as I can remember, I have dealt with living with Asperger’s Syndrome. It is a form of Autism that causes me to have high anxiety, problems understanding appropriate responses in social situations, vocal and physical tics, ADHD, and depression; but it may not be the same for everyone. While my coping skills and behaviors are now a source for others to ridicule and bully me, it wasn’t always that way.
When I was in elementary school, I had fun in school, or at least as much fun as you can have being in school. I didn’t see myself as being too different from my friends and neither did they. We talked about Pokémon and video games and animals. I liked most of my teachers, and even though I didn’t always cope with my stress in appropriate ways, the teachers gave me the opportunity to learn from my mistakes without embarrassing me. I even won several student of the month and reading awards. This all began to change when I was in 5th grade.
I got my first bully in 5th grade. This bully tried to get me in trouble as often as possible. Whenever I told my teachers, the bully always lied, and the teachers could never really do anything because they never witnessed any inappropriate behaviors. I don’t blame the teachers anymore since I now understand they had very large classes to keep an eye on, but even on the rare occasions where a teacher did witness inappropriate behaviors from my bully, the teacher could stop it for that day, but the bully would just start up again the next day. Needless to say, I started to feel pretty vulnerable at school. This was also the same year I started to notice a change in my relationships with my peers.
Fifth grade was also when I noticed that I stood out from my friends. When I become stressed, anxious, or even just really excited, my body releases that energy in the form of twitches and noises. With the increased schoolwork, pressure to try to “act normal”, and the negative personal feelings I was developing because of my bully, these twitches and noises became pretty obvious. My friends started to think I was weird just because they didn’t like or understand the way that I acted. I thought I would get a clean start in middle school, but things only got worse.
When I entered the 6th grade, I was nervous because I was in an unfamiliar setting with different ways of doing things with new teachers and new classmates. Even if I recognized some peers who were with me in elementary school, they were not my friends anymore. I was all alone in unfamiliar territory. I was often ganged up on by groups of other kids who verbally abused me and physically intimidated me. Eventually, I made a friend who was an outcast like me, but soon rumors started that we were gay lovers. While I don’t think being gay is bad, it was another way for kids to label me a freak. As the harassment increased, my depression got worse. I was called freak so many times, I had come to think of it as the truth. My mom had me seeing a therapist outside of school, but I knew I needed help while I was in school.
I had seen the school counselor many times throughout middle school, and I made trips to her office more frequently in 8th grade. I was no longer just having trouble with students, but some of my teachers too. Some of my teachers weren’t very understanding of my situation, and it made it harder on me. My grades began to drop because I was too focused on trying to be normal or even just ignored, to have energy to do anything else. One day I had an emotional breakdown in class that was so severe, that the school called my mom to pick me up. Halfway through 8th grade, my mom took me out of public school and put me into a private school that served many students like me. While I felt somewhat safer at this new school, I was still dealing with the emotional damage done at my previous school. That spring, I was put in the hospital after an attempted suicide. With so many changes over the year, we decide it would be best for me to be retained in the 8th grade. After a second hospitalization, my mom put me in a school that specializes in helping kids with emotional disabilities.
While this new school offered me the chance to learn to handle high stress and emotionally challenging situations, academics are not a focus. Since I want to eventually go to college, become a teacher, and get married and have kids, my grades are important to me. This is one of the many reasons I am excited about DCCS.
While DCCS will not open until August, I have heard many great things about the school from my mother. She talked to me about the project based learning environment that sounds fun but challenging. She told me that every kid will have an IEP, so I will no longer feel like a freak for having one. And, just recently, I was given the opportunity to meet some of my future classmates at a DCCS family picnic.
When we arrived at the picnic, I got nervous when I saw that a lot of people had shown up. Remember, I do not like big crowds. When I finally got to meet some of the other 9th graders, I learned that every student there had some sort of history with being bullied. We all agreed that this history makes it hard to trust people, and like me, they are hoping that DCCS is going to be a safe place away from bullies, and torment, and hatred. As we began to talk, I learned we had many things in common like being fans of Pokémon and video games and comics. I also learned that some of the students have very different interests than I do, but they did not make fun of me for being different from them. They even encouraged me to get out and play baseball with them, which is something I would normally never do.
I know that this upcoming school year at DCCS will be different than any other. With DCCS, I have finally found a school that values each student and their individuality and will challenge and prepare me for my future. They will do all of this in an environment that is both physically and emotionally safe (my emphasis). For once, I am excited to get the school year started!'
I’ll finish by wishing the best of luck to DCCS and by looking forward to further updates from them as they continue on their exciting journey.

Friday 13 June 2014

May the Force be with you

Those of you who are part of or have been following the #JusticeforLB community and #107days campaign will know about the preventable death of Connor Sparrowhawk (LB) in an NHS assessment and treatment unit (ATU).  For those of you not familiar with the case, Connor was a young man with complex needs who needed respite during a period of crisis.  An independent report into Connor’s death found:

1.That Connor’s death was preventable
2. That there were significant failings in his care and treatment
3. That the failure of staff to respond to and appropriately risk assess Connor’s epilepsy led to a series of poor decisions around his care
4. That the level of observations in place at bath time was unsafe and failed to safeguard Connor
5. That if a safe observation process had been put in place and Connor had been appropriately supervised in the bath, he would not have died on 4 July 2013
6. That the STATT unit lacked effective clinical leadership
7. That there had been no comprehensive care plan in place for the management of Connor’s epilepsy and his epilepsy was not considered as part of Connor’s risk assessment, in breach of NICE epilepsy guidance.

The cost of ‘looking after’ Connor in this Unit was £3,500 a week.  That’s £182K a year.

Some of you will also be familiar with the case of Steven Neary, another young person with complex needs, who was deprived of his liberty and held in an ‘Positive Behaviour Unit’ against his father Mark’s and his own wishes for almost a year (Steven and Mark are now thankfully reunited).

Other young people like Josh Wills from Cornwall are not so lucky.  Josh has been placed in a Unit in Birmingham for the last 2 years (it was expected he would be there just 6 months).  Nicole Longhorn from York is in a hospital in Norwich, 4 hours travel away from her family.  Sign Josh and Nicole’s petitions to bring them home here and here.

The Challenging Behaviour Foundation note that 185 children and young people are also in similar situations, stuck in assessment and treatment units hundreds of miles away from their loved ones.

Chris Hatton recently wrote an excellent blogpost where he suggested that control of all the money currently spent on keeping people in these units and similar provisions – often out of county, excessively expensive and a significantly long way away from home - should be given to a Ninja Task Force that puts people with learning difficulties and families in charge.  

I responded very positively to this suggestion and having reflected on it for a few days, I am finding that I want to elaborate on it.  The ‘should be given’ is problematic for me. It conjures up a vision of well-meaning parents and other supporters (Davids) negotiating with Commissioners, service providers and government (Goliaths) for years to gain agreement for a transfer of power and resources.

Jenni Morris wrote that the organisations that currently govern provision and access to it are steeped in what she calls an ‘Apollo culture of order and rules that undermines self-determination’.  She cites Mark Neary’s current experiences (one of far too many) with so-called personalisation as an example of this.  Jenni states that ‘if we really want to bring about positive change, we have to do something fundamentally disruptive to existing systems.’

I am marrying up Chris’ Ninjas with Jenni’s ‘something fundamentally disruptive’ (for some reason that makes me think of the ‘Something wicked this way comes’ tune from Harry Potter).

I think there already IS a Ninja Task Force and I think the Force (may it be with you) could start to make changes by rolling out a model of service provision in one local authority area.

My elaboration on Chris’ proposal – taking on board what Jenni says about the ‘Apollo culture’ of those who govern access to resources - is not to wait for the Commissioners and service providers to give us the power, but to take it for ourselves.

The Force is made up of many knowledgeable and experienced people who are involved in the #JusticeforLB campaign – there are academics, parents, LD Nurses, people who use services and know what they want, people like myself who have already done their own thing in creating alternative provision, Psychologists, volunteers, sociologists, Counsellors, Psychotherapists and more……….

I reckon we are well connected, determined and resourceful enough to pick one local authority where there is currently a publicised campaign around a young person who has been moved to provision away from home.  We could choose the local authority where we have the most collective knowledge/access/contacts/experience/clout/all of the above and put together (and cost out) a proposal for provision to locate that young person within borough and close to the family.

The new provision could be funded by crowd funding/finding an anonymous donor/applying for funding ourselves/embarrassing the major charities (who – with notable exceptions - are currently mostly absent from this debate and certainly from action around it) into providing the funding/anything else people can think of.  The maximum needed would be anything less than what the out of county provision is costing (£182K per year if it is anything like the ATU where Connor was placed).  Once that is in place – and especially if it can be shown that the cost is significantly lower than out of county provision (for example, by families pooling resources to develop joint provision) - it would be indefensible for any Commissioner to refuse to commission it.  And if they tried, the Force is also well connected enough to judicially review the hell out of it.

Once it has been done in just one area, it is then a model that the Force could use to help parents to secure appropriate provision in other areas.

Lots has been written already about what we know about the sort of provision that is needed and how it can be developed in a collaborative way that puts the needs of the young person and family right at the heart of everything.  We already know what works……but we don’t have a system for securing it because we’re dependant on others to provide it.

I think it has to be a mix of a) ‘If you build it, they will come’ (showing that it can be done by doing it ourselves), b) challenging Commissioners by presenting a simple, logical argument that pulls the rug out from under theirs and c) using public opinion and (if necessary) the law to hold Commissioners to account to provide quality services locally.

Here is a back-of-a-fag-packet argument that could be put to Commissioners:

We (me and hubby) set up our own school for children with autism when it was clear that no provider was going to be able to give our child the quality of service that we wanted for him.  We didn’t want our son to go to a residential school miles away (which was the local authority’s answer when no local educational placement could be found).  We didn’t want our son to have to put up with sub-standard ‘one size fits all’ provision which would, because of its lack of true personalisation, actually have made things worse for him. 

The BODY method – Bugger Off and Do it Yourself.

It’s the best, most rewarding thing we ever did.  Its bloody hard work, especially when you have to constantly navigate the Triad of Impairments (Health, Education and Social Care) but my son (and 6 other young people currently educated at Bright Futures School) now have the best chance we can give them at attaining independence, making and maintaining friendships and relationships and finding and keeping meaningful employment.

We were just two scabby parents - imagine what the Force, with all its collective knowledge, experience, commitment, passion, connections and nous, could do.