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.

My original post about Adoption Reform

Adoption Reform: An opportunity to innovate.

The new Regional Adoption Agencies (RAA) are being set up to increase the numbers of potential adopters and adoptions, Currently 180 agencies are involved in the recruitment and matching adopters with children, duplicating roles and thereby increasing costs. The system is inefficient meaning that children are left in care longer than needs be after the placement order is arranged. More time in limbo increases the complexity of the adoptees, making them harder to place, and this has financial implications, as intensive therapeutic interventions may be required to keep the placement going. Good therapy is not cheap.

The aim is to; “ speed up matching and markedly improve the life chances of neglected and damaged children; improve adopter recruitment and support: and reduce costs,” (1 ). The RAA’s will combine a number of Local Authorities and consortia, encouraging collaboration and maximising economies of scale.

The Government wants the 14 new RAA’s to address the current trend for a reduction in the numbers of adoptions in future years. Cost cutting here is also a driver because foster care is expensive, at approximately £700 per child, per week (2). A child who is not placed will cost the Local Authority somewhere in the region of £400,000. Adoption is cheaper, financially at least, as once the adoption order is finalised the adoptive parents carry the financial burden.

The RAA’s are supposedly going to seek new models of delivery, encourage ‘excellent practice’ as well as to increase the scale of adoptions (3). Currently the Local Authorities buy services as they need them. This actually discourages innovation because contracts for the independent sector are hard to come by and long term commitment absent, this makes the recruitment and retention of talented staff hard to achieve. However, although there is a recognition that the support market be developed, the RAA’s are expected to retain all of the responsibilities surrounding adoption unless there is a good reason for this to be otherwise.This appears to close the door for external providers and thus any true innovation, this will also keep costs high as Social Services are not ‘cheap’.

Post adoption support is mentioned in the changes, but perhaps their significance is not fully understood. As it stands, post adoption support is hard to find. Some Local Authority websites are hard to navigate and responses can at times feel unhelpful. Accessing the Post Adoption Fund is a gargantuan task in itself, with built in delays starting with getting a Social Worker to complete an assessment. They then decide if the family need help and if so, the help they can receive.

One family started this process over 18months ago. Their child has been scanned, assessed, analysed over and over again. No therapy can be offered until a ‘diagnosis’ is found. Meanwhile, the child is still struggling and the parents are on their knees. This story is not unique.

Hopefully the new RAA’s will be positive for all involved in adoption. But there are some pitfalls and opportunities evident that need to be navigated.

1.Social Services are in charge of driving the change, whilst having a vested interest in safeguarding the status quo. Being innovative is not a natural way for bureaucratic organisations to operate. They are hamstrung by the target driven culture and the need to manage ever decreasing budgets. There is a danger of the system that currently exists being replicated, but on a larger scale. The difficult decisions will be shelved. The funding will remain where it has always rested and support will not meet the needs of the family or the child.

2. The aim is to increase the numbers of adoptions, incorporating many harder to place children, aiming to drive down costs. The larger issue will be post adoption support, this service will need to become more sleek and responsive as the numbers of hard to place adoptees are set to rise. The pressure on adopters will increase. Placements are just the beginning of a very long road that can take years to travel. Adopters in these circumstances deserve meaningful support throughout this sometimes rocky journey..

3. Currently this support is offered in a ‘one size fits all’ approach, provide by expensive staff in generic models, such as parenting courses. Growth here needs to meet the increased demand for this support, and in this area, innovation is a very real opportunity. More individual approaches are a real possibility now, if things are honestly reviewed. Adopters often need immediate low level support in a way that helps them, a phone call, a visit, consistency that is not necessarily time limited but is driven by the challenges as they present themselves.

4. There needs to be recognition of the fact that no one professional can solve the sometimes difficult issues adoption can present. The adopters need to be resilient, resourceful. They need specific, tailored help to become: parents, carers, Speech & Language specialists, educationalists, psychologists and advocates. They have to learn about behavioural management, challenging behaviour, loss, abandonment, trauma. They need help to become an expert, a ‘therapist’.

5. Adopters need to acquire a Zen like calmness when facing anger that is often the behaviour seen in a child with an attachment disorder. To meet anger with anger at times like this, fans the flames. The help needed is often low key, a non-judgemental listener, who has the time to come and be with them when they require it the most. An adoption ‘Buddy’ to travel alongside them.

Adoption is rewarding but can devastate families. Adopters are resilient. Generally, they adopt for the right reasons. They want a family, a child to love. There is no financial reward for this act of kindness and generosity of spirit. But sadly, love is not always enough. That is when they need to be held, figuratively, to enable them to cope when others would give up.

To have a successful placement means that the child can actualise their potential. Support after adoption is an investment in their future, therapy begins at home. Adopters need to be shown the way, to be told that they are coping well in difficult circumstances. I hope that innovation will look outside the pool of qualified Social Workers, and radically alter the landscape of adoption, but it must first address the current limitations and failings openly and honestly.

This adoption reform is a massive opportunity to improve the lives of 1000s of children in care and to give adopters the opportunity to have a family with correct, meaningful support. It is an opportunity to enrich lives. This should not be wasted, it is time to embrace innovation.

References

1 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/437128/Regionalising_adoption.pdf
2 Selwyn, J.; Wijedasa, D.; Meakings, S. (2004) Beyond the Adoption Order: challenges, interventions and adoption disruptions https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/301889/Final_Report_- _3rd_April_2014v2.pdf
3 Selwyn, J.; Wijedasa, D.; Meakings, S. (2004) Beyond the Adoption Order: challenges, interventions and adoption disruptions https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/301889/Final_Report_- _3rd_April_2014v2.pdf

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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