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?