‘Olivers Campaign’ continues – Women’s Radio Interview

‘Olivers Campaign’ continues – Women’s Radio Interview

My guests this week on my regular Live ‘All things Autism’ Women’s Radio Station were Paula McGowan one of our Charity Autism Ambassador’s and Dan Scorer Head of Policy and Public Affairs from Mencap.

Paula now lives in Australia with her husband Tom and flew back to the UK to meet with Ministers to continue with Oliver’s Campaign.

Paula’s son Oliver McGowan had a brilliant life. He enjoyed college, playing football and was an amazing athlete, in training to become a Paralympian. Oliver was fun and laughed a lot. He loved life and being with his family. He was very bright, achieving GCSE and BTEC qualifications. But on 11 November 2016, he died aged just 18 while in hospital care.

Oliver had high functioning Autism, mild Cerebral Palsy, partial seizures and a mild intellectual disability as a result of having meningitis as a baby. In October 2016, when he was 18, Oliver was admitted to an adult hospital having partial seizures. As part of his treatment, but against Oliver’s and his parents wishes, and while he was still sedated, he was given an antipsychotic drug called Olanzapine. Doctors said it was to control his behaviour when he woke up. Oliver did not normally display challenging behaviour, even when coming out of a period of seizures; he was a very calm and mellow person.

Oliver never woke up. The Olanzapine caused him to develop Neuroleptic Malignant Syndrome. His brain swelled so badly, it was bulging out of the base of his skull and he died. If the doctors and nurses had been trained to understand their duty to make reasonable adjustments for Oliver as someone with Autism and an intellectual disability, they would have known how to adapt the environment to meet his needs.

Following his death, Oliver’s parents have campaigned tirelessly for mandatory training on autism and learning disability for all healthcare staff to avoid more tragic and potentially avoidable deaths like Oliver’s.

In January this saw the government launch a three month consultation on proposals for training for all health and care staff, as well as changes in the law to make this mandatory. In addition, Paula and Tom have been campaigning for changes to the NHS’s Learning Disability Mortality Review Programme or LeDeR, following interference in the process of learning from Oliver’s death by health bodies in the area where Oliver died.

Paula shared: ‘It was a real honour to be asked to be a guest on Women’s Radio show alongside the wonderful Dan Scorer from Mencap. Speaking with the passionate Anna Kennedy is truly inspirational. Her drive for improving the lives for all autistic people is wonderful and one of the  reasons why I have accepted her wonderful offer of being her overseas Ambassador for her charity.

We are coming into Autism Awareness week and I am determined that more and more people understand and accept every member of our autistic community just like they accept our neurotypical community. We all have a right to be equal members of our society which means equal rights to a good education, health and working environments. Please be that person who helps change culture who releases and confronts their subconscious bias and perception surrounding autism, instead embracing what autism really is.’

You can listen again to ‘All things Autism’ interview on Womens Radio Station at 1pm every day this week. www.womensradiostation.com 

Autism Eating Awareness – an article by Georgina Robertson

Autism Eating Awareness – an article by Georgina Robertson

This article is a little harder to write than my previous articles because I am sharing personal accounts of my experience to try and help others understand possible triggers and reasons as to why some autistic young people develop eating disorders. I am not a professional, nor a researcher but I can share my experience and reflections in the hope that in some way it may help others.

We must always bear in mind that no two people are alike and everyone’s experiences are different; the extent to which a behaviour is carried out differs, but there will likely be similarities.

Throughout my life I have battled with Anorexia and bulimia, however thankfully for the last 13 years I have not again travelled down those paths of extreme relationships with food with my weight varying from 4 stone to 16, so what changed?

We know that theoretically 70% of those on the autistic spectrum struggle with sensory processing issues.

These can link into eating difficulties due to textures, smell, touch, colour & temperature of foods which may trigger a person to avoid all together or crave foods. Another difficulty is the inability to differentiate between anxiety and hunger as the physical changes that take place within the body are very similar. A child struggling to recognise and regulate their emotions and understand those of others may think they are hungry and eat continuously or say I am hungry when they only ate moments before; in reality they are potentially anxious.

Another factor is food sensitivities which can mean that certain foods trigger extreme emotional responses such as hyperactivity, anger, and even physical pain such as IBS or pains in joints.

One reason I mention food sensitivities is that consciously, we may not be able to the recognise a Non Gi-Mediated behavioural response triggered by food. These can often result in extreme behaviours which then elicit a negative punitive consequence which further triggers shame and guilt and can lead into a circular relationship with foods in a way to bring comfort or avoid overwhelming feelings without the understanding that the food we crave is the trigger.

Equally many try to encourage children to eat foods they cannot manage for a variety of reasons, I understand the fear, anxiety and desperation that comes for parents when children do this because of the love they have; wanting your children to thrive when self-restrictive diets trigger fear and anxiety in the parent. Another factor for parents is not only having to manage those emotions around supporting their child but managing the judgments and external pressures levied at them from society and professional sectors because our children will not eat particular food groups and/or respond negatively to others.

It is possible that there are other underlying factors that may not have been identified such as hyper-mobility of the mouth, under sensitivity or over sensitivity to smells, touch or even temperature, eating frozen foods may be one way a child can tell where the food actually is within the mouth and provide sensory feedback.

However, some interventions used to achieve the goal of eating certain foods can lead to further trauma, which would potentially increase anxiety through fears of what may or may not happen as a consequence if they do not comply. In reality the avoidance could be for a variety of reasons and until understood and supported, it will make eating a stressful event. Having structured meal times can also make it harder to recognise the signals of hunger and thirst as we may not get an opportunity to experience them and reduces our ability to recognise them; or they are dismissed because the timing is not as desired.

A factor not spoken about often is phobic responses that can be triggered, for instance a child eats some foods wakes up in the night vomiting, they get such a fright because they can’t control what’s happening, they can’t make it stop, its smells, makes a mess, it was unexpected; the result is a phobic response to eating in an effort to avoid all those overwhelming feelings and sensations. There is no conscious thought or planning, just a desperate need to avoid. Without understanding all the factors involved how van a young person be supported through this.

There are also difficulties with normal eating and thirst reflexes; even as an adult I temporarily forget to eat and drink and it’s more likely to happen when I am stressed, anxious or preoccupied with thoughts or a pursuit I am enjoying. It’s as though my body doesn’t send me the signals that I can recognise to say eat or drink. I often wonder if this comes down to regulated meal times such as at school and indeed in hospitals.

One issue that arose for me was the routine of meals and what was available. It was easier in hospital to avoid eating because meal times were very at set times. Food and drinks were only available to consume at those specified times meaning I knew that I only had to get past those moments and then foods and drink were not available. This made it easier to avoid and the longer it continued the easier it became, partly because of my tenacious nature I was able to stick to my resolve and not eat.

I often look back and consider as a child the educational provisions I attended; they were noisy, smelly, crowded, and exhausting where bullying seemed to be a daily occurrence. The places of solace were the library where food could not be eaten, or the art room where I could draw and be away from all that was overwhelming. It meant not having to go into the dining room and have to sit on my own and feel isolated in a crowd; I couldn’t understand why I had no friends, why was I different, all I could see were my flaws that were readily highlighted to me by external sources.

I have also realised as an adult that the effort taken to mask was such that buying a packet of polo’s to eat didn’t require the same expenditure of energy in comparison to having to make choices between sandwiches, main meals, puddings etc. The sugar gave energy quickly because I was already at saturation point.

In reality, it may be difficult for staff to comprehend how difficult it is for children to keep it together when all eight of their senses are out of equilibrium which meaning they are potentially in a continual fluctuating state of flight and fight.

Bearing in mind the NHS do not commission sensory processing assessments, that 70% of children with spectrum conditions are thought to experience sensory processing deficits, this indicates an increased probability of children within these settings having unidentified conditions which contribute to emotional dysregulation. Many children are not supported with sensory diets or equipment as these services are not commissioned nor implemented in educational provisions.

As I grew older the emotional dysregulation was overwhelming, my core beliefs in regards to my lack of worth which were slowly instilled over the years meaning each day was too much effort.

The depression and anxiety led to an even more unhealthy relationship with food, the hyper focus became helpful because becoming preoccupied with diets and losing weight helped distract from the very painful issues that I was not yet ready or able to face whilst others became preoccupied in trying to maintain my body’s state of health.

The core issues were not attended to, in reality I had been misdiagnosed as many girls and women are and therefore my needs were not identified and therapeutic interventions being used were not helpful because they did not take into account the triad of impairments we experience, and therefore were ineffective.

At the age of 22 I won the right not to be resuscitated in Scotland, my life at that point had become so intolerable and my weight so low that my heart could stop at any time.

Many would be scared but at this point the wanting to be free from the emotional pain, this and my fear of hurting anyone was all I could focus on; I had no concept or understanding of how others felt, I had nothing to work with cognitively so I couldn’t process it when people spoke of the effect my behaviour had on them, it was empty with no relevance or meaning to me and my own anxiety, depression, guilt and shame overshadowed everything else.

It wasn’t that I didn’t care about those around me, I cared too much; my core belief system was that the world would not miss me if I were no longer here. I shut down.

In hospitals where everything is controlled and monitored and access to things could be severely restricted, one of the only tools available was not to eat and drink.

Often the response to not eat and drink was triggered by an extremely overpowering emotional response to a trigger within the environment, feeling powerless, being out of control, fear and anger the two most powerful emotions.

During adolescence changes began within my body and others reactions to those changes as well as my own meant I started restricting foods. I wanted to fly under the radar, to avoid the physical, emotional, sensory and social issues, I started to avoid these by controlling food intake.

The hormonal fluxes meant certain times of the month were overwhelming; the sensory issues associated with that time minimised when periods stopped, the discomfort felt within my body, its shape, the smells, the attention it brought from others I wanted to avoid because it was too overwhelming. It was not until the suggestion that I keep a dairy I could logically see and tell myself that this will only last a few days, in a few days these emotions will not feel so overwhelming.

It took many years to realise that no matter what shape or weight I was, my beliefs about myself would not change unless I faced them, but I had to be ready, being forced or pushed to address them just meant I hyper focused more on foods and diets to avoid addressing the difficulties I was experiencing; the issue was, the perspective from which professionals worked was responsible, they like myself did not understand other factors were at play, impairments linked to being autistic. I genuinely didn’t understand.

As I reflect, I realise that I never ever actually wanted to die; the behaviours associated with anorexia and bulimia did not elicit any happiness in fact they further compounded my views and the views of others, their judgements and opinions of the motivations behind what I was doing simply made it worse.

There were also aspects of control, the more others tried to enforce regimes around eating or not bingeing the harder my heels dug in. Many would see this as me being willful, attention seeking, manipulation and often cited as such which negatively impacts the person involved and shows the lack of understanding around such issues; in reality, the anxiety felt at losing the only tool I had in my kit box was being removed and punitive punishments just reinforced my negative self-worth and increased my anxiety.

This meant I stopped drinking or eating or I swung into bulimic states because when you start to eat you crave foods and want to eat and eat, but then the fear, guilt and shame take over with the end result again being either not eating or the binge and purging; none of this was enjoyable, these were exhausting.

It was impossible to explain this when others warned me I could die; I never actually believed it was a possibility, although I knew what death was I don’t believe I fully grasped what it meant, the finality of it and yet dying had been one of my biggest fears growing up. I didn’t know or understand the future effects on my body because I was working with the here and now, the words were empty and meaningless to me.

I wasn’t able to process what was being said and to be honest the less I weighed the harder it became to process; my executive functioning skills reduced dramatically, my obsession with food increased because my body was trying to alert me that it was desperate for nourishment. Colours become brighter, emotional dysregulation increased, sounds become sharper, the ability to regulate temperature deteriorated, depression and anxiety increased becoming even more overwhelming; sleep became more elusive and dreams more chaotic which meant I was exhausted.

The people, we care about try and support us, to encourage us to eat and drink but we are deaf to those pleas; to others we appear nonchalant but we are masking and hiding behind food so you don’t see our true feelings, feelings potentially that we don’t even understand at that time.

All I wanted was peace from the pain; the pain of not fitting in, the pain of society reinforcing their view of my worth… or lack of; their judgement and interpretation of my behaviours though they did not look deeply to establish what they were about or what purpose they served. They did not ask, it was so much easier to blame me than seek answers elsewhere, to use coercion, guilt and shame to elicit the response they desired.

The sensory overload from nasal feeding tubes was awful, the loss of control; the fast physical changes where overwhelming. The same with gastric feeding tubes, which often lead to desperate attempts to remove them; to others we look defiant but it’s so more than that.

One of the hardest parts of my journey was the subconscious self-sabotaging behaviour that took place every time community living was a potential. Many would not understand the fear and anxiety of going back out to an environment where you felt out of place, where you didn’t fit in; the painful knowledge that you are different but not knowing why, what’s wrong with me being the most common thought.

Constantly feeling overwhelmed but not understanding why, feeling lonely, isolated, ostracised, judged and being failed in regards to support because it just wasn’t and still isn’t provided.

The avoidance of foods would start again because in reality, despite the power dynamics and abuse of power, institutions provide routine, someone to talk to as there are other service users like yourself so a sense of community, we knew what times sessions were, we had opportunities such as studying, volunteering, a sense of worth, companionship, the wards would be familiar, staff were familiar and predictable; it was far from the cold harsh reality faced every day within the community.

The need to belong somewhere, anywhere, can for some be a contributing factor to the ongoing issues around foods though we and others may not recognise this at the time.

For me it changed in part with Mindfulness and emotion regulation, behavioural chain analysis and eating awareness. I was taught to recognise physical responses to emotions, I could then name them and was better able to communicate these. I learnt to recognise triggers such as repetitive intrusive thoughts, I learnt different ways of responding to those triggers and learnt new skills to help cope, although personal relationships were a disaster and to this day I still struggle with this aspect.

I used volunteering build up my self-worth and self-esteem, this gave me a sense of purpose, built relationships outside of a hospital and taught me over time that I was not responsible for the behaviours or responses of others.

The biggest turning point however was receiving my correct diagnosis of Asperger’s at the age of 39; I finally understood why I had struggled so much in school, with relationships and in the community and why my relationship with food had led to extremes.

I have learnt over time that life is worth living despite all the stress that can come with it. Sadly, though it doesn’t mean that isolation, bullying, ostracism does not continue and in some respects as a parent it has now increased, however I no longer go to extremes with foods in an effort to cope, I have knowledge and understanding and certainly no desire to go back there as on reflection, that period of time was horrific and the damage to my body irreversible. It has stolen time, opportunities and achieved very little other than I survived in part because of those behaviours whereas many unfortunately do not.

Looking back, I appreciate things may have turned out differently if my needs had been correctly identified, supported and understood with appropriate interventions used to support and enable me rather than coerce me then possibly my unhealthy relationship with food would not have continued for so long. If support had been identified and provided in the community, then maybe things would have been different.

What works to help one person may not help the next, support must always be person centred.

The importance of approach and empirical research to substantiate that therapies used are beneficial not harmful and adapted to the person’s specific needs cannot be underestimated.

The interventions I remember being tried such as ECT, CBT, DBT, isolation, punitive punishments; the stress and trauma of nasal gastric tubes, and abdominal gastric tubes when in reality the professionals as unaware as me as to root cause, they were working with information that redirected blame at the vulnerable and invalidated our experiences.

They could not and still rarely grasp the reality of our situations.

It is of paramount importance to understand that we are vulnerable; we do not purposefully, intentionally or even consciously start down this route. There are so many factors that play a part, trying to fly under the radar, trying to fit in and some we may be still unaware of, especially in children who have a fragile sense of self. Unless a child/young person’s needs are correctly identified and supported the potential for these difficulties around foods and eating will continue any potentially increase in intensity over time.

Living with eating disorders and autism is challenging, it is not attention seeking, manipulative, it is not meant personally it’s trying to survive or avoid what in the world is overwhelming us.

Compassion and understanding are so important as is correctly identifying needs and providing appropriate support. Parents need to be supported rather than blamed. We all need to work together, to listen carefully to what child, young person or adult are saying as this issue affects all age groups. At times maintaining the health of a person is all that can be done, once this is achieved let’s work together to support and understand the level of anxiety and fear, pain, sadness and anger being experienced, lets understand how being autistic impacts on this situation and how other co-morbid conditions also impact on us.

This may then provide us all with ways forward to manage and overcome in order to reduce the need to perpetuate less than healthy relationships with food.

AKO Autism Expo 2019

AKO Autism Expo 2019

Families, carers, friends and educators of autistic children and adults were warmly invited to join Anna Kennedy OBE and a host of experts at the fourth year of The AKO Autism Expo at Brunel University in West London .

The event was Organised by National Autism Charity Anna Kennedy Online, a charity  dedicated to raising awareness and acceptance of autism, the aim of the event was to give like-minded people the chance to share stories, talk to professionals in specialist clinics and to find out more about autism and its related conditions.

The day was a fantastic success and was sponsored by Options Autism, Camelicious, Greenboard Games and The Autism Reality Experience. The Mayor of Hillingdon Councillor John Morgan once again attended one of the charities events and gave a speech on “What a great event for families and professionals to come together at Brunel University and talk ‘All things Autism’ “.

The Expo included a range of practical and inspirational advice; the day had an impressive line-up of speakers covering topics such as nutrition and autism, how to inspire a love of learning through interest-led games, and raising awareness of Pathological Demand Avoidance (PDA), as well as insights from Autistic Adults who have carved successful careers . Other highlights of the event included free clinics run by experts offering legal guidance on Special Education Needs, autism training and advice on occupational therapy.

The show once again attracts a wide range of exhibitors offering specialist strategies, products and services to help people manage and understand autism – visitors checked out sensory equipment and visual aids, special yoga, gluten-free and other special diets, movement therapy, a support network for Dads, and more. The aim is to provide as much information and advice as possible to anyone caring for or educating people with autism.

Families and professionals had the chance to learn about the Autism Reality Experience of which AnnaKennedyonline are proud to be in collaboration – This is a mobile unit equipped with a range of hands-on sensory experience families and professionals had the chance to learn about the Autism Reality Experience – a mobile unit equipped with a range of hands-on sensory experience designed to give people greater insight into the sensory processing difficulties faced by people on the autism spectrum.

Anna Kennedy shared “This event could not be  created without my team of dedicated volunteers made up of parents of autistic children ,adults and autistic adults who give up their free time to help me host such charity events. I cannot thank them enough and we have become a family that gets bigger every year. Thank you to Tally Nothey for pulling this event together.”

Our next Charity event is at The Apple Store Covent Garden on April 5 for Autism Awareness Week.

Anna Kennedy OBE
Director

An inspector calls. Again. But are they improving SEND provision?

An inspector calls. Again. But are they improving SEND provision?

Just under three years ago, inspectors from Ofsted and the Care Quality Commission began checking up on England’s SEND services. 

The original plan was a one-shot gig – inspect SEND services in each of England’s 152 ‘local areas’ (that’s the local authority, plus the NHS commissioning groups that work within it), check to make sure the 2014 SEND reforms were being implemented effectively, and wrap the job up in 2021.

Plans don’t often survive reality unscathed, and that’s what’s happened here. The powers that be who commissioned and designed these inspections didn’t anticipate the scale of underperformance in local area SEND services. 

Where are we now?

We’re now just over halfway through the inspections – check out the infographics for more detail, and to see what’s happened in your local area and region. But here’s how things stand in mid-March 2019:

Find the interactive version of the map here

  • 82 of the 152 local areas have been inspected, and have received an ‘outcome letter’ detailing their performance in implementing the SEND reforms. Five more are awaiting the result of their inspection.
  • Local area SEND inspections aren’t like school inspections: there’s no grade from outstanding to inadequate. But in 40 of the 82 local areas – nearly half of them –  inspectors found performance poor enough that they invoked their most serious sanction: instructing the local area to submit a written statement of action (WSOA), a plan showing how council and NHS leaders are going to improve the service.
  • Inspection outcomes are getting worse over time: in 2016’s inspections, 25% of local areas were told to write a written statement of action. In 2017, 51% of local areas had to submit one. And in 2018, nearly 60% of local areas inspected had to put a WSOA together. There’s not a clear reason why, but it’s highly likely that inspection standards have risen since the first visits in 2016. 

There’s also a disparity in outcomes by region: London and the East Midlands have performed relatively well in these inspections, but outcomes in Yorkshire and the North East have been much poorer. Again, it’s not exactly clear why, but it’s notable that many inspections in the North have been led by Ofsted’s most experienced & capable SEND specialists.

Written Statements of Action

So what happens when a local area is told to submit a written statement of action? We’ve covered this in a previous SNJ article, but here’s how it works: 

In their outcome letter, the inspectors will have identified several areas where they feel serious improvement is needed. For each of these areas, the local area writes a draft plan outlining:

  • what the intended outcome will be;
  • what needs to improve to achieve the outcome, and by when;
  • who in the local area is responsible for ensuring that improvement happens, and;
  • the indicators or steps that will tell the local area that it is actually improving.

All fine: but someone has to make sure that the local area is delivering on the plan, and the original arrangements for that were pretty hazy. The architects probably anticipated that this would be an occasional outcome – not something that would end up being needed for half of England’s local areas.

So the task of making sure the local area was getting its house in order was largely left to a roving band of DfE & NHS consultants – in some cases, the same consultants who had reported no serious problems with the local area prior to the inspection. 

There were clear problems emerging with this gossamer-thin monitoring process. So in July 2018, the Department for Education announced two things

  • Firstly, that they’d get Ofsted and CQC to monitor the local areas that had to submit a written statement of action, check on their progress, and advise the DfE on next steps. 
  • Secondly, DfE would ask Ofsted & CQC to design a second cycle of local area SEND inspections, to start once the first cycle of inspections had finished in 2021.
 

The Re-Visit Process

Ofsted & CQC set about designing a monitoring process in the autumn of 2018, and what emerged was a system of ‘re-visits’. You can find the full re-visit framework here, but here’s how it works:

  • If the local area was told to submit a written statement of action, Ofsted & CQC inspectors will re-visit it roughly 21 months after the date on the original inspection outcome letter.
  • The re-visit isn’t a full re-inspection – it focuses on the areas of serious weakness identified in the first inspection. If fresh horrors emerge during the re-visit, they’ll be noted down for investigation the next time a full inspection happens.
  • The re-visit is carried out by one of Ofsted’s Her Majesty’s Inspectors (HMI) and a CQC inspector – if possible, these will be the same people who carried out the original inspections.
  • Local areas get 10 working days’ notice of the re-visit – a week longer than they got for the inspections. That’s less time for local area turd-polishing than you might think – during this time, the local area has to keep the inspection team fed with data showing what they’ve done to improve since the inspection.
  • The re-visit itself is 2-4 days long, depending on how much the local area was originally told it needed to do to make its services fit for purpose. Most of that time is spent gathering evidence to check that the local area has actually taken effective action to remedy the serious weakness identified in the original inspection.
  • During the re-visit, inspectors meet with children and young people, as well as parents and carers. They might venture out on visits, or they might not – it depends on the original areas of serious weakness.
  • Once the 2-4 days are over, inspectors start firming up their judgements. For each of the areas of serious weakness, they’ll make a call on whether the local area has done enough to address them. The inspectors then draft a summary re-visit letter, put it through quality control, and it then gets published on the Ofsted website roughly 6-7 weeks after the re-visit.
  • The re-visit letter says upfront whether the local area has done enough to address each area of serious weakness. If new concerns get thrown up as a result of the re-visit, they’ll get mentioned in the letter too. 

So how do parents fit into this? If you’re a parent or carer, there are several ways you can get involved: a meeting organised with the parent carer forum (PCF), an open meeting, and an online survey that opens a week before the re-visit. This looks similar to the process used for the full-fat inspections – it’s somewhat creaky, and parents need to be alert to get involved

Also, bear in mind that inspectors will be mostly focusing on the weaknesses that they identified first time round. If you’ve got fresh evidence showing other parts of the local area’s SEND service running smoothly or diabolically, then inspectors will take it on board – but they’re unlikely to take immediate action on it.

Re-Visits: The Story So Far

It’s still early days for these re-visits – as far as we can tell, there have been four to date (Rochdale, Hartlepool, Suffolk and Dorset) and two more are happening this week (Sandwell and Surrey). 

Rochdale was the first local area re-visited. Inspectors gave the local area a generally clean bill of health, reporting that Rochdale had made sufficient progress across their four areas of serious weakness; they recommended that Rochdale no longer needed regular monitoring visits to keep them on track. 

Things aren’t so rosy-looking in SuffolkInspectors re-visited in January, examining four specific areas of serious weakness. They found that Suffolk had made sufficient progress on one of the four areas, but reported that Suffolk hadn’t made sufficient progress across three of them: too many EHCPs were still weak, the local offer and CAMHS mental health service were still in disarray, and efforts to improve joint working were still underdeveloped.

From the report, it looks like evidence from Suffolk parents was taken seriously: over 700 parents and carers provided evidence via an online survey and through SPCN, Suffolk’s formidable parent carer forum.

Last week, Ofsted & CQC reported on their January re-visit to Hartlepool, with a similar story – some progress made, but the quality of Hartlepool EHCPs remained too variable, and joint commissioning of education and health remained too weak. 

What happens next?

So what happens if a local area ‘fails’ one of these re-visits? We don’t know – but the little we do know makes us uneasy.

At this point, there’s no road-map. The only thing that’s clear is that the accountability ball gets passed back to central government. The Department for Education and NHS England decide what happens next. The inspectors trudge off stage-left, only to reappear if Whitehall summons them back again.

In theory, the Department for Education could use Ministerial powers of intervention to impose a new setup via statutory direction. They could issue a non-statutory improvement notice, beefing up the DfE’s existing monitoring and oversight arrangements. Or, of course, they could do nothing of consequence. 

And at this point, there’s a real risk that the accountability process will move behind closed doors in Whitehall, with parents and local front-line professionals shut out

Suffolk local area SEND leaders have already been summoned to a meeting with DfE and NHS England personnel to discuss next steps. Suffolk parents asked to attend this meeting. They’ve been shut out – they’re not even allowed to attend the meeting as observers, let alone as full participants.

The determination of Whitehall civil servants to shut parents out of this critical process tells you a great deal about their real commitment to co-production. Co-production is something other people should do, must do. Ministers, civil servants, and consultants give fine speeches about it. But it’s not for them. It’s for the little people.

Somewhere, hidden in the wings of this two-year bureaucratic clown show, there are children and young people with SEND who need proper provision, and they need it now. And they need the full participation of parents and carers in the process of making things better.

Does any of this make a difference?

We call this site Special Needs Jungle for a reason, and this is a part of the SEND jungle that’s particularly dense and impenetrable. Understanding this part of the jungle matters. People in positions of power and influence are making important decisions off the back of what these inspections reveal or fail to reveal. 

And after a frustratingly complacent and inconsistent first year, many of these inspections are now unearthing hard truth about how SEND services work at local area level. The process is now overseen by specialist inspectors who genuinely ‘get it’. But this is a problem that boils down to a simple question – will these inspections actually improve things for children and young people with SEND? 

The answer’s mixed. The local area SEND inspections often focus on strategy and process flow, and sometimes that makes improvements hard to see at an individual level – particularly those that are happening slowly behind the scenes. But there’s a limit to what these inspections can achieve. 

Inspectors aren’t regulators – they’re there to see how effectively local areas are implementing the SEND reforms. They don’t have a direct remit to hold your local area to account for its failure to act lawfully. 

Unbelievably, four-and-a-half years after the SEND reforms began, with evidence of failure now visible from space, with serial unlawful behaviour stretching back decades, this sector still has no regulator.These inspections aren’t a fix for that. Parents are still going to need to rely on the SENDIST Tribunal, the Local Government & Social Care Ombudsman, and even judicial review to secure their children’s educational rights.

These inspections also don’t touch SEND funding, which is in national meltdown. The Suffolk re-visit failed to report on the near-total breakdown of mainstream high-needs SEND funding arrangements in the local area, caused by a mixture of national shortage and local incompetence. 

And ultimately, inspections also don’t happen frequently enough to embed changes in local area organisational behaviour – which is still shocking in many local areas lucky enough to be in the first wave of complacent inspections. Talk to families in places like Derbyshire, East Sussex, Hertfordshire, Northamptonshire & Trafford – who all ‘passed’ in 2016 and 2017 – and you’ll hear cases of appallingly unlawful behaviour. These local areas won’t be reinspected for at least two, possibly three years. No real improvement’s likely there for years. 

These inspections are now a lot better than nothing – but inspectors are working within the limits of the powers they have. And for the worst areas, the ultimate power to drive improvement lies with the Department for Education and NHS England – and they don’t appear to want parents and carers involved.

As appalling as it is, it’s still up to parents to make SEND accountability happen.

Who’s next for a re-visit?

  • Waltham Forest – Date confirmed: March 2019
  • Date not confirmed: Sefton; Middlesbrough; Brent; Bury; Wakefield

Source: https://specialneedsjungle.com/inspector-calls-again-but-improving-send-provision/

How to Start Your Own Autism Blog

How to Start Your Own Autism Blog

This afternoon, I joined Dr Anna Kennedy‘s weekly show ‘All Things Autism’ at Women’s Radio Station. Today’s episode centred on starting an autism blog and we’re lucky to also have on the show autism blogger Ann Hickman, who also contributes for HuffPost UK.

Anna kicked off the show by sharing her insights about autism – She said that until now parents with autistic children are still being told that:

  • ‘Your child has eye contact, they cannot be autistic’
  • ‘Your child is too articulate, they cannot be autistic’
  • ‘This adult isn’t autistic; I have seen Rain Man
  • ‘This person can drive; they’re not autistic’

Just like Anna, I find these comments unsettling. We’d think that as a society, we had already moved on from all these stereotypes on autism. Apparently, more needs to be done.

And this is where blogging about autism could be helpful – blogging is a powerful platform in creating conversations.

Having a fellow blogger on the table makes the topic even more meaty. But even though Ann Hickman and myself are both bloggers, we have slight differences with our blogging backgrounds. For one, Ann draws her content from her lived experience of having autistic children, while I run a user-generated blog.

I also gathered from our conversation that Ann runs her blog to ultimately promote awareness about autism. I, on the other hand, run a blog because it’s my chosen career and also to promote awareness on mental health.

I also shared on the show that my blogging journey started with me blogging about my opinions, and then later on as a travel (It was only in 2014 that I launched Psychreg). In contrast, Ann started as an autism blogger straight away. Yet, in spite of these mini difference Ann and I share the same passion for blogging. And this passion is what you will constantly hear from bloggers like Ann and myself.

It may sound cliché and a little unrealistic on the surface, but there’s a reason for it. When you blog about something you’re passionate about, you’re more likely to put in the time and effort to make your platform shine. 

Throughout the show, Ann talked about her experience as an autism blogger. She runs ‘Rainbows are too beautiful‘. She hopes to raise awareness, promote understanding, discuss important issues, and most importantly offer support to those who are passionate about autism. 
Ann’s blog opened up opportunities for her. Right now, she is a contributor on The Huffington Post UK and The Mighty. She has also provided guest posts for newspapers such as the Yorkshire Post and several online publications including Special Needs Jungle. Ann shares many posts as a way of increasing awareness.

While Ann talked about her experience of being an autism blogger, I focused on the technical element of blogging: I offered tips on how to start a blog (be it an autism blog, or something else):

  • Choose a domain name
  • Choose a blogging platform
  • Decide how often you would update your blog
  • Promote it on social media

Aside from writing for different publications, both Ann and I have also spoken at a number of events. Ann has been a speaker at one of the events of Optimus Education; while I have been invited to speak at a number of events both here in the UK and overseas. This summer I will be one of the speakers at Mental Health Blog Awards to be held at Portsmouth on 27th July. It was an afternoon filled with learning and insights about the blogging. 

We thank Dr Anna Kennedy for inviting us on her show and we hope that her listeners enjoyed today’s show as much as we did. 
You can catch a replay of the episode online at Women’s Radio Station or via their app.

Source: https://www.psychreg.org/how-to-start-autism-blog/

Month: March 2019