Parents comments on draft ALN Bill (Wales)

The Welsh Government has just published  the responses to their consultation on the draft Additional Learning Needs and Tribunal Bill. The Bill itself has yet to be published in final form.   (A summary list of respondents is provided on pages 35 – 41 here) I found these quotes from parents on pages 852-3
 Parent 1 
“I definitely feel that I suffer(ed) PTSD and I don’t think that’s exaggerating at all. You
feel like a civilian who’s been dropped into a war zone and told to start fighting – for
your child’s future.
I still felt very unsettled for a couple of years after my battles were over. I was always
expecting victory to be snatched away or for something to go terribly wrong.
And although time does numb the memory of the bad bits that state of enhanced
vigilance never really leaves you. It does make you a very different person.”

Parent 2
“My husband had a very PTSD reaction. He was depressed I realise now for quite a
while after the Tribunal win. It was the injustice of it, the lies and deceit about a child
who needed help desperately.
There was some research done a while ago by a lawyer who did medical negligence
cases which showed that people were more likely to get PTSD as a result of a medical
injury than a road traffic accident even if they had similar physical injuries. Its to do
with the trust, the fact you trust a doctor and being let down by someone you trust is
worse. Often victims needed counselling to get over the loss of trust e.g. some
became hospital / doctor phobic, as much as recovering from the actual injury
caused. The research shows being let down by the very people who are employed to
help you triggers PTSD type responses.
I feel the distance from other families too. And it’s not them that has changed or that
they are less friendly, it’s me. I hear their worries about their children and they just
sound so trivial. That’s not their fault, I used to worry about trivial things too, now it
has to be major to even register on our family richter scale. When one of my sons was
diagnosed with diabetes this year was easy, I didn’t even cry, I just realised it was
something that could be dealt with. There was a clear evidence based plan, accurate
prompt advice, endless medical supplies and everyone was nice. I haven’t even read a
book about diabetes yet. It’s nothing like being left for months feeling desperate and
helpless and watching your child get worse and no-one expressing a view about
anything in case it implies they should spend some money.
My neuro-typical kids are going to be so resilient as adults. Anything less than
catastrophic has become no big deal in our house.
For me it’s the stress I still find hard to manage. It took months to realise the lengths
the LA would go to as it only became apparent bit by bit. So my stress levels went up
bit by bit over many months. Whereas now I know what they are capable of so it’s like
I constantly live my life on the edge and the slightest thing they do or even a simple
meeting and I am right back at level 10 stress levels, there’s no gradual build up. Just
constant vigilance .”

Parent 3
“Yes to the loss of trust, the stress, hyper-vigilance, and to the distance from other
families. Yes to resilience of all the children to many things that would bother others,
to calm acceptance of most non-catastrophic events, and my own ‘war veteran’
permanently changed personality.
I suspect many parents in the SEN maze have an even worse experience than that
faced by many victims of medical error. Because although the consequences of
negligence are devastating, it’s usually not done on purpose. Most health disasters
are individual level, accidental slips, judgement mistakes, or else due to work-
overload exposing various massive flaws in the organisation of a particular
department or system.
NHS cover-ups do happen, large-scale institution failure is not uncommon and some
trusts are a disaster waiting to happen… but there’s usually another nurse, doctor or
physio somewhere to try and patch things up.
Deliberate withholding of information, dirty tricks, spurious social services referrals,
giving misleading reports to other professionals, denial of blatantly obvious
problems, unjustified withdrawal of provision and constant, outright, bare-faced
lying… this lot seems to be reported almost routinely by SEN parents, particularly if a
child is complex and/or has ASD. We even laugh about it. Yet no-one has suggested
that even the worst of the scandal-hit NHS trusts routinely treated most patients like
this”

Parent 4
“It’s also hard to feel good about a Tribunal victory like this. You haven’t won
anything. You’ve achieved baseline, adequate. You’ve fought so hard for something
very basic that until you began fighting you had assumed was a given as the
legislation and published documentation implies.
You won’t ever forget what you have seen in your war.
I ‘won’ an election to become a parent governor. I worked hard on my statement and a
little canvassing. My ‘victory’ has not left me shell shocked. It has left me proud of
myself and excited. You cannot possibly feel either of these things with your victory
as you weren’t fighting FOR something good but against something evil.”

Parent 5
“My son was left languishing outside the school system after his placement broke
down because of his disabilities. Everyone involved with him agreed he needed
alternative provision. Yet it took 6 months, an LGO complaint and the threat of judicial
review to get the LA to do anything.
In the meantime, I stopped work. I taught my son myself. We used our savings to
employ a tutor for as many hours as we could. And we waited while the LA wrangled
with anyone they could to avoid paying for our son’s education. In the process, it tried
any tactic it could to blame us for our son’s lack of education and then the delay
despite the unanimous support and agreement of every professional involved,
including my son’s school. And this is a Pathfinder Champion.
The pressure on our family has been intolerable and we have learnt to focus on what
is really important in life but we have seen the underbelly of a system which my
solicitor describes as ‘not fit for purpose’.
It feels like my son is nothing but a burden to the education system. Instead of
valuing him and supporting him and developing his strengths and talents, he was
simply left to rot. Without us, he would have nothing. But who cares? He’s only a
‘SEN’ kid after all. Who would accept this for any other child?
It seems to me that you stick a ‘SEN’ label on a child and it’s permission to fail to
them. Getting our son the educational provision he is entitled to do did not feel like a
victory. We were left feeling shell-shocked and I will never forget what those paid to
help us were prepared to do to get out of providing him with an education.”

The summary of responses provided by the Welsh Government includes the following:

“Significant concerns were raised by local authorities, third sector organisations and
education professionals that the capacity and resource would not be in place to implement the reforms, in particular for the 0-25 age range. To ensure that the needs of children and young people were met, a number of respondents called for additional resources, including funding and training, to be made available, particularly for local authorities to manage provision for 16–25 year olds.”

“A number of education professionals and individuals highlighted the uncertainty of the role of Educational Psychologists (EPs), as there was no mandatory requirement for them on the face of the Bill. It was proposed that the role of EPs be recognised on the face of the Bill and the Code to ensure that children and young people in Wales have the same rights of
access to an EP as those in England.”

“There were conflicting views from respondents on whether the draft Bill created a robust
legal framework for the preparation, maintenance and review of IDPs [Individual Development Plans] A significant number of respondents called for an IDP template to be developed to support the consistent delivery across Wales”

“Respondents from local authorities, SENCo groups, and third sector organisations called for a statutory duty in the Bill on other agencies, in particular health bodies, to carry out
assessments, provide information or deliver services when they are required to do so. A
number of education professional groups, including the National Association of Principal
Educational Psychologists (Wales), highlighted that the Tribunal should be able to hold
other agencies to account during disputes around a learners ALN or ALP.”

“A large number of responses from individuals, local authorities and the third sector
commented that the draft Regulatory Impact Assessment, included within the draft EM [Explanatory Memorandum], significantly underestimated the impact of the legislative proposals on the education sector in terms of workload and financial cost. They also expressed concerns that the suggestion that the reforms would be cost neutral once embedded was not realistic.”

“A number of respondents identified specific areas of the draft Code that required further
detail and clarification, including how the new system will support …  learners who are home educated” 

LINKS 

Main consultation page

http://www.sinclairslaw.co.uk/news/specialist-law-firm-responds-to-welsh-consultation/

Written Statement  July 1st 2016:

Alun Davies, Minister for Lifelong Learning and Welsh Language“In his Statement in Plenary on 28 June, the First Minister set out this Government’s plans for the first year of our Legislative Programme.  I am very pleased that an Additional Learning Needs (ALN) Bill, which will reform the current legal frameworks for supporting children and young people with special education needs (SEN) and learning difficulties and/or disabilities (LDD), will form part of our Programme.  We want to transform the expectations, experiences and outcomes for learners with ALN.  This process of transformation is already underway, through a comprehensive programme of wider reforms, but the introduction of legislation is a key step in the reform journey. I am publishing today, a summary of responses to the consultation on the draft Additional Learning Needs and Education Tribunal (Wales) Bill, which ran between July and December 2015. This is in line with an announcement made by the former Minister for Education and Skills on 16 March 2016 that such a summary would be published by the new Government following the Assembly election.  The responses to the consultation and feedback from the extensive engagement programme that ran alongside it were strongly supportive of the principles of our reforms.  However, some concerns were of course also raised.  Some of these reflected a desire by respondents to access a greater level of detail, others reflected misunderstandings of our intentions or the anticipated practical impact of our proposals, and some expressed direct concerns about specific aspects of the proposals.  All feedback has been carefully considered and used to inform development of the legislation itself, the draft ALN Code and, crucially, the wider ALN Transformation Programme.  I will say more about the Transformation Programme in due course. The comprehensive programme of engagement undertaken during the consultation on the draft Bill did not conclude at the end of the formal consultation period; it continues to be a priority.  An expert practitioner group – the ALN Code Content Development Group – ran until April 2016 and has provided significant and valuable input in the process to develop the next iteration of the draft ALN Code.  I expect this next version of the Code to be made available during the passage of the ALN Bill through the Assembly to support the scrutiny of the legislation.  We have also convened an ALN Strategic Implementation Group (ALN-SIG), made up of key delivery partners. The ALN-SIG is tasked with planning for transition to the new system, developing practice and processes to ensure effective implementation and subsequent monitoring of the ALN Transformation Programme. I expect this engagement to widen further as we move forward with our transformation plans.  I look forward to working collaboratively – cross-government, cross-party and cross-sector – to co-design and co-deliver a robust new system, which is supported by users and practitioners, sustainable for the long-term and that will have real positive impact to the benefit of our most vulnerable learners.”

 

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