The Human Face of new Disability Legislation

My son Eric is finishing Year 11, as I have already written about. I am saddened by his lack of academic achievement because he is intrinsically bright but missed too much education through behavioural issues to fully engage and uncap his potential. I hope that he wakes up soon and starts investing in himself or believing in himself, as he has written himself off because he attended a ‘special school’. He excuses his attitude because of the school he attended. His labels are heavy on his shoulders affecting his psyche.

I live in hope but at the same time I am faced with the necessity of emphasising his disabilities because he has turned 16years of age and now according to a Government Department he is ready to manage his own money!! We have been in receipt of Disability Living Allowance that now transitions into Personal Independent Payment ( PIP) because of his chronological age. We have already had to fill in new forms, a person from the Pensions & Wages Department came to make a home visit to see Eric, I have had a 20 minute phone conversation giving the department all of the information that I have already supplied many times before.

The next stage is that we have to fill in more forms and provide medical evidence outing the full extent of all of his disabilities. We then have to take him to a ‘medical professional’ who will assess his disability. This medical professional will no doubt not be qualified in assessing Autism & ADHD or indeed Pragmatic language Impairment.

Eric must be paraded in front of this individual and perform. He must concentrate on all that he cannot do, he must wear his issues proudly to inform of a complete stranger. They will then in their wisdom say Yes or No to PIP payments. They are apparently more able to assess than the Consulting Paediatrician, the Speech & Language expert, the ADHD nurse, the Educational Psychologist and the school. All of these experts have assessed Eric over the years, the main diagnosis took 13years of his life to conclude but they will miraculously be able to assess and judge in a short interview! They must be amazingly skilled!

Apparently most get turned down. It is a cost cutting exercise make no mistake. It effects those most in need, those with disabilities. It effects this with more ‘hidden’ disabilities even more so, because Autism & ADHD do not present in a quantifiable way. They are not the same for all, they are non tangible but nevertheless, effect lives deeply.

To meet Eric, you would see a personable young man but would remain completely unaware of the depths that lie underneath like unchartered waters. You need to know Eric to truly experience him and understand the barriers he faces on a daily basis.

In all honesty, I feel conflicted. I never wanted labels for Eric but have released that they are the only way to get any help. I do not want him to be seen as disabled, to see himself in this light. I want him to get a good education, work and be able to support himself. To live a life of which he is proud. He deserves all of that. I would love of him to have no need for benefits but the reality we face is that he may never achieve the success he deserves. This statement makes my heart break.

If he cannot achieve all that he should, through no fault of his own, then the very least he deserves is an allowance to live as well as he can. Of equal import is that he should be able to hang onto what he has got left of his dignity. He should not have to be paraded like a pantomime horse, in order to prove to some nameless wonder how disabled he is. The system is wrong, It strips dignity form people in need, It is designed to humiliate. The irony is that those who are benefit cheats will remain unaffected because they will still live off the State and find a way around the rules. The real drain on resources will continue as ever before.

People who make the policies should walk in the shoes of those most affected and see if it feels like a true and just system. I bet they would throw this policy out on first draft as it compromises human dignity. It is a bullying, belittling system with a built in negative bias, the outcome written before the dance begins.

In addition to this, what 16 year old do you know, is truly able to manage their own finance?

When Education Fails to Educate…

Yesterday I was struck with such sadness. I was talking about my son ‘Eric’ to a friend. We were discussing where he was up to. I was discussing that on the whole he is calmer at home, bar one incident the week before last when he blocked me in a room because I was saying that he wouldn’t be allowed on his phone because of the way he was talking to me. He became quite threatening but it did not last long. These incidents are rare these days.

Mainly he huffs and puffs but tends to, eventually make better choices. He still struggles with his peers, he targets the alpha male of any group and thinks the way of making friends is to wind them up to such a degree that they want to physically assault him. This is a pattern that has repeated itself throughout his life, one boy after another.

He cannot change his approach because in that moment, it is how he is wired to approach these young men ( as they are now) in this confrontational manner. He is fantastic at the throwing of insults that hit the mark every time, his aim is faultless. However, he is not a fighter, he hates violence and collapses onto the floor at the first sign of physical threat. Which is of course good in that he does not fight but equally he cannot defend himself.

With the right support at home, talking endlessly about how relationships work and communicating with school very frequently, these dangerous situations have so far been safely navigated without a visit to A&E. These issues are Eric.

My sadness came when I thought about the fact that he would leave Year 11 without any qualifications to his name. His behaviour has meant that he has lost his opportunity to be educated. Throughout his school life he has been anxious, angry , non compliant, suicidal. This meant that the only school that could manage him was a special school for students with moderate learning difficulties.

I love the school. In so many ways it saved him. Certainly after receiving his autistic label over 2 years ago and he was taken into the Autistic Hub, the teachers have worked so well with my complex, challenging child. They like him, look at the behaviours he displays as a means of him communicating with the world. They try to understand his triggers. They talk to us as parents and work with us. They are never judgemental.

However, in many ways this support is too late. My son missed too many years of education. He has been let down by his primary school and the efforts High school, by health professionals and adoption workers. He ended up at a school surrounded by angry young men and women. His peers are not aspirational for him. His survival instinct has been at the forefront of his brain, not the need to learn. It was the only option for him but not the right option on so many levels.

Eric is bright, articulate, interesting. His memory is phenomenal, he has wit, empathy and energy. He has potential but it is locked within him, reinforcing the belief that he is different, not bright and too scared to try in case he fails.

Eric is not alone. How many young people who do not fit into education as we know it, get labelled as being ‘naughty’, or disruptive? How many young people get little or no education because they cannot conform to the rigid systems that we use in schools? One size does not fit all.

I hope Eric finds a goal that he wants to aim for. if he does this then there will be no stopping him. Lets hope it is an aspirational goal! Please do not write off the ‘naughty’ young people..find a way to see their potential.

Resources on the Internet

Adoption Support Fund UK
www.adoptionsupportfund.co.uk

Attention deficit hyperactivity disorder (ADHD) – NHS.UK
https://www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/

Autism spectrum disorder (ASD) – NHS.UK
https://www.nhs.uk/conditions/autism/

SEND Code of Practice- British Dyslexia Association
www.bdadyslexia.org.uk

SEND Code of Practice: a summary | The Key for School Leaders
https://schoolleaders.thekeysupport.com › … › Managing SEN provision

Contact Information for other Organisations

Adoption Matters
www.adoptionmatters.org/

Attachment Aware Schools
attachmentawareschools.com

Coram
www.coram.org.uk/

IPSEA ( Independent Parental Special Education Support)
www.ipsea.org.uk/

PAC-UK:
www.pac-uk.org/

The Attachment & Trauma Network – ATN
https://www.attachmenttraumanetwork.org/

The Bowlby centre

Psychotherapy training centre

The National Autistic Society | – NAS
www.autism.org.uk/

Young Minds
https://youngminds.org.uk/find-help/conditions/adhd

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