Here is the response from the RCOT on professional standards

Thank you for contacting the Royal College of Occupational Therapists (RCOT).  The Royal College wants its members to fully engage with The Children and Families Act 2014 and provide the best quality contributions to Education and Health Care Plans to identify what children want and need to achieve and what support is needed to realise this. In order to do this, we endeavour to provide our members with various ways to engage in this in different formats to provide the right advice and information and to assist with ensuring that they are skilled and competent to contribute to Education and Health Support Plans.  We do this through:. 

 

  1. Web resources e.g. We have a dedicated ‘Childhood to Adulthood’ webpage for our members which includes the following information:

               Balancing what is important to a child/young person (to lead a fulfilling life) with what is important for the child/young person (become or stay healthy, happy and safe).

              Guidance for the occupational therapy contribution to writing Education, Health and Care plans

 There will be transitional arrangements for children and young people who have existing statements and information can be found on the GOV.uk website. 

 

The Royal College of Occupational Therapists has developed two ‘Frequently Asked Questions’ documents to assist occupational therapists in defining and presenting occupational therapy involvement for children and young people who have education, health and care needs including contributing to joint plans and tribunals.

  1. Through resources such as webinarsThis webinar video below provides practical advice for teachers and school staff in supporting children and young people with special educational needs and disabilities in schools from an occupational therapy perspective.
  2. Through training and education. We run a week’s course for children’s therapists on skills required to practice effectively, focusing on effective occupation focused outcomes for children. This course includes writing EHC plans
  3. Resources for Supporting Practice which draw upon latest evidence in the field – We call them SPEAR topics   Supporting Practice- Evidence and Resources (SPEaR)
  1. Specific Clinical resources for RCOT Members
  1. Dedicated staffing resource to support occupational therapists working with children, families and Young people.  RCOT also has a Professional Advisor post, specialising in Children, Young People and Families, and another dedicated to Professional Practice Enquiries who can advise members regarding their queries and they provide 1:1 guidance related to each individual client.  

 

  1. Members of the public, who contact the College for advice

The Professional Advisor for Children, Young People and families and the Professional Practice Enquiries Officer are available to answer any queries from members of the public and provide advice tailored to their query.

  1. Outward facing activities by the College

               RCOT believes that it is important that members of the public and other stakeholders, e.g. teachers are also able to access information related to occupational therapy.

 

               The information below is also available to members of the public via RCOT’s You Tube channel:

 

 

               RCOT has also worked in collaboration with the Council for Disabled Children https://councilfordisabledchildren.org.uk/ to produce the following guidance:

 

               https://councilfordisabledchildren.org.uk/help-resources/resources/advice-education-health-and-care-plans

 

               https://councilfordisabledchildren.org.uk/making-ourselves-heard/resources/send-reforms-explained

 

               Our professional Advisor in collaboration with Pearson’s has produced a webinar specifically focusing on Practical Advice for supporting children and young people with special needs and disabilities in schools: an occupational therapy perspective. This webinar   has a clear focus on the content of EHC plans.

 

               https://attendee.gotowebinar.com/recording/9122653843886093314  www.pearsonclinical.co.uk

 

Kind regards,

 

Anne

 

Anne Keen

Professional Advisor – Professional Practice Enquiries Service

Good morning, sincerely, I hope it is…

For the second time this year, the wonderful Jayne McCubbin and BBC Breakfast have been raising attention on SEND and in particular, the delays in the transition from SSEN (Statements of SEN) to EHCPs (Education Health and Care Plans).  If you click on the SEND link above, you will see thousands of testimonies on Twitter of parent’s, carers, and advocates, talking about the old process, the delays, the poor plans, the poor transitions etc.

As I’ve mentioned in my previous blog (here) I believe one of the most critical factors in obtaining a competent and lawful plan, is the quality of reports, the relevancy of reports, which inform the plan.

So what did I do?

Off the back of the first week of #BBCSEND, I contacted both the RCSLT (Speech and Language professional body) and the HCPC (Health Care Professionals Council) which is the regulatory body for the vast majority of specialists who inform, Health, SEN and Social Care elements of plans about standards and requirements under the law which governs that required for a plan, the entire purpose why their professionals are commissioned.

Here is what I asked;

Good afternoon,

I am a blogger who focusses on Autism, Special Educational Needs and the Law, my site is here www.asddadadvocate.com

My query to you today is this.

Sections 20 & 21 of the Children and Families Act 2014 govern the identification of SEN and Provision to meet that under the duties of the act by a Local Authority, commissioning services from members under your governance.

Regulation 6 and 8, Special Educational Needs and Disabilities Regulations 2014 show under Reg 6 the scope of reports in terms of professionals under your governance, and duties to comply with those requests within 6 weeks of commission.

Whilst content and suitability of an EHCP for section B (SEN) and F (Provision) can be challenged to Tribunal by Young Persons, Parents and Carers etc, the suitability of content provided is either a contractual obligation between the Principal (The Local Authority carrying out the investigation) and the Contractor (your registrant who has been commissioned to inform any possible requirements under their expertise under Sections B & F).

The application of C&F Act 2014 and SEND Regs 2014 law shows that the description of SEN & provision must (legal duty) be specific as applied in;

R V THE SECRETARY OF STATE FOR EDUCATION AND SCIENCE, EX PARTE E [1992] 1 FLR 377 CA
L V CLARKE AND SOMERSET COUNTY COUNCIL (1997) [1998] ELR 129
R V LANCASHIRE COUNTY COUNCIL EX PARTE M [1989] 2 FLR 279
LONDON BOROUGH OF BROMLEY V SENDIST AND OTHERS, QBD AND CA [1999] EWCA CIV 3038

and most recently

JD v South Tyneside Council (SEN) [2016] UKUT 0009 (AAC)

and that reports must not be delayed

http://www.lgo.org.uk/decisions/education/special-educational-needs/15-011-838#point4

I am unable to find any guidance:

http://www.hcpc-uk.org/publications/brochures/

Or instances where for example, Speech and Language Therapists, have been sanctioned by yourselves for non-adherence to law, unlawful acts.

https://www.hcpts-uk.org/hearings/search/results?sm.prof=13&sm.rno=&sm.rname=&sm.outcome=&sm.htype=&sm.fDay=28&sm.fMth=11&sm.fYr=2016&sm.tDay=29&sm.tMth=11&sm.tYr=2017

Although only one of the professions, I have chosen Speech and Language Therapists as their professional bodies’ guidance (updated in 2016), which is freely available, clearly has a good grasp of the law (although makes no reference to stare decisis) and gives clear guidance on good and lawful practice.

https://www.rcslt.org/cq_live/resources_a_z/docs/SEND/cfa2014

However, the regulator, yourselves, appear to neither sanction nor give guidance on the same for your members.  I find this particularly of concern, given that you state you do not punish, but merely protect the public.

It will be my assertion in my new article, that protection of the public, should and does include young persons under the duty to educate, the duty to care for, the duty to make adequate provision for and crucially, the duty to inform those requirements.

I have evidence personally of a report by a member which falls woefully short of the RCSLT guidance, yet there is no way to know whether this is something that the regulatory body, yourselves would take action for either an individual to not repeat this malfeasance, nor to give guidance to your members on their duties under the law, which gained Royal Assent on 13th March 2014.

I would like to include your response, a link to guidance or policy on how members should ensure they follow the law and good practice (as the RCSLT do) and conversely, the possible ramifications and actions they may face for unlawful practice in the exercise of these functions.

Kind Regards

ASD Dad Advocate

So what happened next?

Eventually, I got a reply…

Here it is;

Thank you for your email, and apologies for the delay in getting back to you.

In relation to your concerns about professionals’ adherence to the law, our Standards of conduct, performance and ethics apply to all of our registrants, and state that they ‘must keep up to date with and follow the law, our guidance and other requirements relevant to [their] practice’ (Standard 3.4).

Our standards of proficiency are specific to each of the professions we regulate, and the standards of proficiency for speech and language therapists outline that registrants must ‘be able to practise within the legal and ethical boundaries of their profession’ (Standard 2). Furthermore, they must ‘know about current legislation applicable to the work of their profession’ (Standard 2.5).

We don’t provide guidance covering all aspects of our registrants’ scope of practice but, as can be seen above, we expect them to follow current legislation, as well as local policies and guidance. Professional bodies provide more detailed guidance to professionals, so I recommend that you get in touch with the Royal College of Speech and Language Therapists – you can find their contact details here.

In relation to our fitness to practise process, it is part of the HCPC’s role to deal with concerns about registrants. Concerns are raised from a variety of sources, such as from employers, members of the public, or by registrants themselves. If a concern meets our ‘standard of acceptance‘, it will be investigated to see if there is a case to answer about whether that registrant is fit to practise their profession. When there is a case to answer, the registrant’s case will be heard by a committee, at which the registrant and any witnesses are able to give evidence.

Whether a registrant has failed to maintain specific standards will inform the decision-making about whether their fitness to practise is impaired. Where there is impairment, a committee may then decide to impose a range of sanctions on the registrant, for example, by issuing them with a caution, placing conditions on their practice, or suspending or striking them off our Register.

I hope that helps.

Regards,

Louise

Louise Shewey 
Media and PR Officer
The Health and Care Professions Council

So what does this mean to me?

Firstly, whether you are a parent, carer, young person, advocate, or professional, you can see from my request the standards which are required citing the relevant law about reports and specificity, you can also see the links to the professional bodies guidance to their members on expectations and requirements under those standards. 

The duty is clearly laid out by HCPC to follow the law and guidance, this is a requirement of fitness to practise and if a professional falls short, they rely upon professionals observing the lapse, or parents/carers/YPs/advocates/contractors who rely upon these standards of professionalism and quality to formally make a complaint to the HCPC and or professional body.

For professionals reading this, I would suggest, regardless of your actual profession and or body, you take a look at the RCSLT guidance, not as it pertains to necessarily your area of expertise, but upon how it relates the law, to professionalism and accountability.

Guidance for Physiotherapists (from Association of Paediatric Chartered Physiotherapists)
Guidance for Occupational Therapists (Awaiting guidance from the RCOT)
RCSLT Guidance as above

Feel free to tweet to me about this or anything else @asddadadvocate

Thank you Jayne McCubbin and BBCSend

Hopefully, you will have been watching BBC Breakfast this week, or been following the discussion on Twitter or possibly even listening to the your call on Radio 5 about home education (2 mins 44), but this week, there has been a focus on some of the current issues with SEND in England (the laws are different in Wales & Scotland).

Jayne McCubbin has been wonderful this week in drawing attention to some of the issues, with great input from Autistic Children, IPSEA, National Autistic Society and others.

The focus of this blog is centred around a Twitter thread, where I asked for guidance on how reports for EHCPs could specify either ambiguous provision or limited sessions (6 seems to be a number used frequently in NHS SALT Triage) to meet requirements in an EHCP.

As you can see from my previous blogs, my personal experience, and that I have seen through my training in SEN Law and supporting others, consistently draws a theme in Section B (SEN) and Section F (Provision), of a lack of specificity, many times outcomes are dire in education, or worse, institutions.

This is particularly amplified in my experience of excellent practice for one ASD twin in mainstream, and the opposite with his twin in Generic SEND school for which, we are again commissioning suitable reports out of our pocket and fighting at Tribunal in January!

Back to the point of this blog.

When investigating whether an EHCP is required, the Local Authority must commission suitable reports to inform needs, these are governed by Regulation 6 of the SEND Regulations 2014. This includes;

(a) advice and information from the child’s parent or the young person;

(b) educational advice and information

(d) psychological advice and information from an educational psychologist;

(f) advice and information from any other person the local authority thinks is appropriate;

(g) where the child or young person is in or beyond year 9, advice and information in relation to provision to assist the child or young person in preparation for adulthood and independent living; and

(h) advice and information from any person the child’s parent or young person reasonably requests that the local authority seek advice from.

I have copied the subsections which may be used to identify SEN.  These reports should all be specific in the identification of need (s20 C&F Act 2014) and the required provision (s21 C&F Act 2014) as is highlighted in the recent case of JD v South Tyneside Council (SEN) [2016] UKUT 9 (AAC), for which, I’d like you to read the excellent guidance by Boyes Turner on the case.

In short, the critical point is that the plan should be “so specific and clear as to leave no room for doubt as to what has been decided and what is needed in the individual case”.

The application of Law at the Upper Tribunal, in this case, leaves no room for any other practice or standard of a report, it even suggests some of the types of unhelpful, unspecified language which was used in the report in that instance.

When this legal standard is applied to the Children and Families Act 2014 statutory duties on Education, Health, and Care and joint commissioning (for the reports of type in Regulation 6 SEND Regulations 2014 above), that a local authority in England must exercise its functions with a view to ensuring the integration of educational provision and training provision with health care provision and social care provision, where it thinks that this would;

(a) promote the well-being of children or young people in its area who have special educational needs or a disability, or

(b) improve the quality of special educational provision.

Must is a legal duty, it cannot be obviated, so the duty for the LA is clear, and as you can also see in the subsection above.

So what is the duty of the professionals who are commissioned to write reports to inform SEN and Provision?

Well, where a local authority requests the co-operation of a body in securing an EHC needs assessment in accordance with section 31 of the Act, that body must (legal duty) comply with such a request within 6 weeks of the date on which they receive it. (except for limited exceptions you should be aware of).

So we have established, that reports, must, unless exception is proven, be provided within 6 weeks of commissioning (ensure you know when this occurred to keep track, as the LGO have decided in other cases, that if there is unreasonable delay, a private report can be commissioned to fulfil the requirement).

But what about the content and suitability of the report.  Well, this is more complicated, as the report is a contractual obligation between the principal (the LA) and the contractor (the professional), the YP or Parent/Carer, are third parties to that contract.  A failure to meet the deadline is a contractual issue to the LA, but a regulatory one (Regulation 8) to which a complaint process must be exhausted until level 3 where the LGO would intervene.

However, there are also professional guidelines and governance for the professionals writing these reports which may or may not meet the legal standard required of these reports.

For example, the Royal College of Speech and Language Therapists (RCSLT) have published guidance on standards for their members, which is generally (apart from one or two legal semantics) very good in its interpretation of what is required under the Children and Families Act 2014 (this could be improved by also including legal interpretation of terms in caselaw like JD v South Tyneside above).

It states;

  • Advice requested by the LA must be provided with six weeks.
  • Advice should:
    be clear, accessible and specific,
    normally be quantified,
    relate directly to the needs of the child or young person and not the availability of resources, be based on available evidence and best practice,
    not name specific schools,
    include time required to support staff, attend meetings, write reports, review the evidence, measure outcomes and monitor progress.
    Addressing speech and language impairment should normally be recorded as special educational provision unless there are exceptional reasons for not doing so.

It goes further about the provision itself in that;

In the majority of cases, speech and language therapy is educational provision, and therefore ultimate responsibility for ensuring that speech and language therapy specified in an EHC plan is delivered rests with the LA.

Where the SLT considers there to be a significant shortfall in the provision, they should bring it to the attention of their line manager, the designated medical/clinical officer, the child’s parents, the LA and other partners, to facilitate timely provision being made by the LA.

HCPC standards These responsibilities set out in the Children and Families Act are in addition to, and should be considered in the context of, the HCPC standards that all registered SLTs must adhere to.

So you can see, the guidance from RCSLT clearly states the standard required of content, and also makes suggestions about responsibilities to challenge where this is not adhered to.

Who are the HCPC?

The HCPC are the regulator of these professionals (and others).  As a regulator they do have powers, which include;

  • They can hold ‘hearings’ where health professionals and lay people decide if a registrant’s fitness to practise (ability to practise) is impaired by their conduct, competence or health.
  • The hearings are there to protect the public – not to be punitive to the registrant.

 

The maximum sanction is to strike a person off the register, meaning they cannot work within the UK for a minimum of five years.

I have gone through the https://www.hcpts-u    k.org/ database of hearings for Speech and Language Therapists, the only suspension has taken place, where a professional missed dysphagia (a condition regarding swallowing) where their expertise wasn’t sufficient and this affected health.  I haven’t found a single case where a failure to adhere to guidance on reports have been sanctioned.

This is likely because as above, the HCPC are there to “protect the public, not to be punitive to the registrant”.  Looking at the lack of any action or sanction on non-adherence to SEND Regulations 2014, Children and Families Act 2014 or RCSLT Guidance I am unable to find guidance on the same from the Regulator the HCPC .

So why is this all important?

Well, without the above being applied, you can’t possibly hope to have a school implement advice, or get a Local Authority to fund it?

As you can see from my previous blogs, I have challenged this at Tribunal and have been vindicated.

You’ve seen the law on specificity, you’ve seen the guidelines from Speech and Language Therapies, now here is just one of my own examples of this in action, in reports by a member of the RCSLT, and registrant with the HCPC.

Recommendations to meet Speech, Language and Communication Needs

YP will require a high level of adult support to follow daily routines.  He will require opportunities to develop social interaction skills with peers in a small group.

YP requires continued speech and language therapy support to advise on his speech, language and communication development through alternative approaches and further develop these to support YP’s understanding and expression.  YP will require support from staff with experience and knowledge of alternative methods of communication, i.e. Makaton, Symbol Use and Intensive Interaction and be in an environment, whereby this total communication approach is embraced.

I will leave out the Speech and Language Therapists’ name for now, but the date of that report was 9th June 2015 (well after the law changed).

Issues with this report:

YP will require a high level of adult support to follow daily routines.  So what is a high-level, is it a number of hours? People? Is it their experience or qualification? Which routines? Follow independently? Or with support? (none of this is so specific as to leave no room for ambiguity).

He will require opportunities to develop social interaction skills with peers in a small group. What type of opportunities? What is an example of an opportunity? How many opportunities? What kind of social interaction? Is it non-verbal interaction? Pre-verbal interaction? Verbal interaction? Alternative communication method interaction? Who are his peers? What constitutes a small group?

YP requires continued speech and language therapy support to advise on his speech, language and communication development through alternative approaches and further develop these to support YP’s understanding and expression.   Continued at the same level? What is that level? How much? How often? By whom? Alternative approaches to what? Which alternative approaches? To develop what exactly? How is Br’s understanding and expression demonstrated or measured?

YP will require support from staff with experience and knowledge of alternative methods of communication, i.e. Makaton, Symbol Use and Intensive Interaction and be in an environment, whereby this total communication approach is embraced. This part is actually the best part of the report, however, what kind and how much support? What symbol use? What is intensive interaction? How is experience and knowledge of Makaton, Intensive Interaction shown?  The last part, I’m ok with… but you get the point.

The big recap (or the short version if you prefer)

  • Awareness has been raised by BBC & Jayne McCubbin on prime time morning tv.
  • Unlawful reports make it impossible if unchallenged for schools to know what to implement, how to implement or to have funding provided to implement advice. They cannot follow these reports to Assess, Plan, Do, Review the plan’s effectiveness in that area.
  • A detailed, specified, quantified report is no guarantee of its use in preparation of the EHCP (we are at Tribunal again in January for this reason) and it doesn’t mean the school will actually implement or follow this report (again, this is an issue we have to resolve for one of our two Autistic twins).
  • A good report, included, funded and implemented by a good school, does get good outcomes!
  • The law clearly shows this should be the case.
  • The RCSLT Guidance also supports these aims.
  • Their members, in a significant number of instances including our own, fall well short of these standards (whether as is normally the case, commissioned by the LA or whether the parents have gone to the expense to try and get a quality report privately).
  • The potential unlawful standard of reports is not a part of the EHCP Tribunal process.
  • The potential unlawful standard report is not part of a contractual obligation for the young person it is intended for.
  • The regulatory body, the HCPC, do not currently have any guidance similar to the RCSLT on standards and lawful requirements for its registrants that it is the regulatory body for.
  • There are 152 Local Authorities  carrying out EHCP assessments, SSEN conversions and reviews in England.
  • There are 200 Clinical Commissioning Groups in England.
  • There are 15,547 registered Speech and Language Therapists under the HCPC in England
  • There are 38,969 Occupational Therapists under the HCPC in England
  • There were 175,233 children and young people with statutory Education, Health and Care (EHC) plans and 112,057 children and young people with statements of special educational needs (SEN) maintained by local authorities as at January 2017
  • If each of those had SALT as part of their SEN, that’s 287,290 reports for each area of SEN by professionals to be relied upon to make detailed, quantified, specified provision in each SSEN/EHCP
  • Assuming complaints are made, there was no result of a sanction of a member for Speech and Language for unlawful practice under obligations of C&F Act 2014 or SEND Regulations 2014 within the current calendar year.
  • People wonder why vague reports continue, when there is no sanction for their acceptance by LA under their Contractual performance to meet their duty, there is no sanction for unlawful standards of reports at SENDIST, there appears to be no sanctions for unlawful standards of reports at HCPC Tribunal Service.
  • No one in government seems to be aware of, understand or care sufficiently about these issues in order to ensure compliance.

Please feel free to comment or share your examples.

Most parents and carers have aspirations for those in their care.  Your child is born or is brought into your care and like most, you draw out a map, ticking off milestone after milestone, rolling over, crawling, standing, talking etc.  Differences are seen, perhaps to other children you have, or other children at the play center, and then the process of finding out what is wrong begins.  We trust professionals, most of us not being a neuroscientist, a child psychologist, an occupational therapist or an SCLN therapist, are left with no other option than to trust the word of the GP, the Paediatrician, the rest.  Primum non nocere, first do no harm, is the ethical pledge, and the law measures this by action or omission where a child is in your care as a professional, it is a wonder then why, in some cases Local Authorities are late to identify, and many times, even later in intervening to assist within the law.

The need for reliance on professionals, Local Authorities, Healthcare Trusts and others is understandable, but often parents and carers do not question, or when they do, not know how or whom to question to get the right answers.  An EHCP process is supposed to last 20 weeks, “Of the new EHC plans made during 2015 (excluding cases where exceptions apply), 59.2% were issued within the 20 week time limit. This has reduced from last year when 64.3% were issued within the time limit. Of the new EHC plans made during 2015 (excluding cases where exceptions apply), 59.2% were issued within the 20 weeks time limit. This has reduced from last year when 64.3% were issued within the time limit. The percentage of EHC plans completed within the time limit is lower than the percentage of
statements issued within the time limit in previous years. We would expect local authorities to take time to
adjust to the new system, in particular, the addition of health and care elements. There is a large variation between local authorities which is also reflected at a regional level. For example, in the outer London region, 71.1% of EHC plans were issued within 20 weeks whereas only 47.5% were issued within 20 weeks in the East of England. It should be noted however that there is no management at regional level.” 

“Children aged 11 to 15-years-old made up the largest proportion of children and young people with
statements (49.7%) and combined statements and EHC plans (43.4%), however, 5 to 10-year-olds made up
the largest proportion of EHC plans (31.8%). Children under 5 years of age made up just 1.1% of children
and young people with statements but 11.5% of children and young people with EHC plans. This could be
because children in this age group are more likely to have entered the system after September 2014, so
would have been assessed under the new system for an EHC plan instead of a statement.” (source is https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/525774/SFR17-2016_Main_Text.pdf” 

When you couple that the PACT (Pre-School Autism Communication Trial) concluded “PACT therapy can be recommended for the purposes of improving parent-child two-way play and communication in ways that are likely to be positive for parents themselves and that may have longer term benefits for the child.”, with the statistical fact that pre-school children are not picked up very well (1.1% of total plans).  Merely getting a Statement or an EHCP does not guarantee quality therein and even then, with a good EHCP/Statement you need a good school and a Local Authority able to fund the right support.  It is a broken system from start to finish.

So if we accept that the system is broken, what could be the potential outcomes?

The study below shows that for many where diagnosis doesn’t occur, intervention is not provided, the incidence of dire consequence is significant.  Many young persons in the correctional system are affected in this way, the cost financially is massive, the cost societally is massive, the costs of lost time and potential to the individuals is immeasurable and certainly impossible to be compensated for.  That’s why we must change this system together!

Please read and then share if you’d like others to see what happens, when we, parents, carers, Local Authorities, Education Authorities, Health Authorities and Government do nothing.

Young_Offenders_with_SEN_A_New_Perspective (3)

The Autism Show at the weekend was the best and worst of Autism I’ve experienced in my 5 years invested as a parent, carer and advocate.

The NEC in Birmingham was busy both days, with what looked like a good turnout from various types with interest around the show.  On Friday, as expected, there were more “industry” types in attendance, be it professionals who work around Autism, sell or commission services and equipment and education for example.  There were also plenty of young persons with Autism, some pre-school with parents (who were impeccably behaved), teens and Autistic Adults who showed interest.

This post centres around my experience of the show as a whole, what for me was the best around Autism and the worst that I’ve heard since becoming a parent, carer and advocate for those with Autism.

Primarily my role was working for the service I volunteer for IPSEA  which is a collection of Legal Professionals, Parents, Carers, the majority of whom volunteer for this vital service in ensuring that Young Persons (YPs), parents, carers, foster carers, schools, other professionals and even those in Local Authorities understand the duties and requirements around SEN Statements and Education Health and Care Plans to ensure that students are reasonably and sufficiently supported.

Our Friday slots (which were 30 minutes running all day except for half hour lunch) were booked within the first 30 minutes of doors opening.  Both IPSEA at our stand and another service SOS!SEN was busy all day, both telling about what we do, but also informally answering generic questions and queries about SEN and how people could get support.

The Best of Autism…

On both days I met amazing parents, who, despite the odds and in many cases lack the support, acquired or innate expertise to spin all the SEN plates such as therapy, law, nursing, administration, counsellor, cook, cleaner etc who day by day prove to be superhumans in their “sticktoitiveness” in their duties.

I met the head of a specialist 6th form school who not only sees his duty to educate, but also life skills and critically, a real tangible plan, led by his learners as to a way to get into the type of employment his pupils might thrive in.  He told me of a case where a student who was obsessed with Winston Churchill was offered a position with Blenheim Palace as a result of the Young Person’s amazing performance in their work experience which was fully supported by them.

I met an Autistic Genius who gave a talk to hundreds of people in attendance.

I met two young ladies diagnosed with Asperger’s who were as ambitious about life as they were understanding that their teachers didn’t see the world like they did, and despite that leading to frustration, it was also an opportunity for the student to be the teacher and the teacher to be the student.

In all the clinics’ parents were attentive, children impeccably behaved and patient with me waffling on, and next steps were agreed with parents hopefully refuelled with enthusiasm to go intrepidly onto the next steps of their EHCP journey.

The Worst of Autism…

As an advocate, parent, a carer, a friend of others with Autistic loved ones and someone who has already seen a multitude of harrowing stories with KWADE (Kids With Autism Demand Education) I heard several instances of failure which are possibly far more symptomatic of nefarious intent and action, than mere inability or lack of knowledge around support for Autistic Children.

Children who have a plan already, stipulating 1:1 support for known anxiety and safeguarding issues where their support has been used in other classes due to lack of resource in the school.

The same children, with the lack of support resulting in a meltdown and self-injurious behaviour due to meltdowns and anxiety.

Children, locked in a storage cupboard because they were unable to cope in a classroom.

Children, lied about, suggesting all is well in reviews when psychologists are observing they are in crisis.

Parents consistently being lied to, whether deliberately to obfuscate or due to a lack of professional ability is a matter for those parents and staff to know.

So what next?

We, society, need to decide what is really important;  Schools are having funding cut, Local Authorities are having funding cut, “professionals” are deliberately putting ambiguous wording into reports which legally require specificity, 

Schools and Local Authorities are having funding cut, “professionals” are deliberately putting ambiguous wording into reports which legally require specificity, plans are being written which do not even remotely allow the user to actually plan what is required, by whom, when and how to measure success or failure and need for more intervention, classes are big and teachers do lack resource, professionals are following an apparent policy to “Deny, Delay, Obfuscate, Repeat” when it comes to the SEN Process, and Tribunals are having too many cases, let alone all of those parents who physically and mentally can’t make it to the First Tier Tribunal.

What can I do?

  • Support and include families with kids with SEN
  • Make sure your MP is doing all they can to ensure your schools and those with SEN are supported
  • Help schools to understand the diagnoses and be a part of the techniques learned in school
  • Learn about the techniques from all you can about what your child needs and encourage others to do the same to understand
  • If you know someone with a child with SEN, learn about it, teach your child about it
  • Advocate for change
  • Learn about the law from places like IPSEA etc.
  • Be the changes we wish to see and hope that others follow.
  • Keep on going – when going through hell, it is best to keep moving

Thanks for reading the blog, please feel free to reach me on Twitter @asddadadvocate about this or other blogs and go with grace.

Meanwhile… here is a fantastic new advocate I’ve found for what can be achieved… Musician, Rapper, Asperger’s diagnosed Dan Bull.

This blog will, as regularly as my life will allow, publish thoughts on Autism, the law affecting education amongst other things.  Hopefully, it will point to resources and help elsewhere, it will challenge discrimination and champion equity, it will give you an insight to me, and hopefully, it will be fun to read.

 About me, I’m a 40 something father to twin boys with, as coined by Donna Williams a “Fruit salad” of conditions, each completely different to the other and each beautiful in ways I cannot describe. I’m a law graduate in England with a strong interest in Medical Law, Ethics and in particular, the law which affects Special Educational Need and Disabilities (SEND as it will be referred to from hereon).

My first post really is the reason for starting this blog, it is to share my experience of the Law in the UK from being a parent who knew little about this area of law, codes of practice for Local Authorities, and special educational needs as a whole, to who I am now having gone through to Tribunal to challenge provision.

From diagnosis to Tribunal

Gradually throughout the early years process of Early Years Foundation Stage education our boys showed signs of having Special Educational Needs (SEN is defined by Sections 21-23 of the Children and Families Act 2014 – Part 3).  Both boys struggled with the difference in setting size between the assessment place at a Special Educational Needs Nursery which had high support and low numbers with Therapists on site, compared to the private nursery had high numbers, typically supported by much lower qualified and experienced staff, many of whom were still students.  Despite best efforts of those staff, they were ill-equipped to support either of our boys.  As a result, behaviours were reported on a daily basis of ‘inappropriate behaviour’ which clearly was both misunderstood and not correctly supported.  As a result our boys both left that placement.

Thankfully a wonderful charity based nursery accepted both boys at short notice on the proviso that extra support would be funded by the Local Authority.  This was our first experience of the ‘SEN Game’ or as it’s known on Twitter #SENDReality. The Anonymous Panel decided to fund roughly 2/3 of the entitlement despite it clearly being identified as a ‘safeguarding’ issue.

This is when I first became aware of the following resources I will share with you:

IPSEA (Independent Parental Special Education Advice)
Cerebra
Disability Law Service
Carers Hub

The majority of these resources are charity based and as such, I advise that as much as you may use them, share them and link to them, please try if you can to support them, by either training to help others or by sending money to help them run.

As a Law Graduate, I knew that once the Local Authority identified the duty, they also accepted it or denied it in full and not a graduated response to something which was needed at all times as suggested in our boys’ case.  A long story short is that despite this situation dragging on throughout the remainder of their entitlement (they both joined infants school, aged 4 in September) they only paid part of the expense required to fund their place, despite this being discriminatory on the basis of disability to access their entitlement.

A significant issue around Autism is stress and transitions and given that the Local Authority were aware of the naming of schools and transition to school, no plan for this was put in place.

The entire EHCP process is supposed to take 20 weeks, in our situation for our twins, our EHCP which was triggered in January 2016, was only resolved at First Tier Tribunal in January 2017.  I want to highlight that the 20 weeks, as illustrated below, although a guideline, is only key for the parts where you can trigger a challenge for each component section.  Expect it to take a lot longer.

Here follows my raw experience of the Tribunal process immediately after court;

“So… today was a learning day…

What I’ve learned today from the SEND First Tier Tribunal…

That unless you have a report, from a qualified (preferably higher qualified than the other side) person, detailing exactly the issue, a programme to address it, recommendations for who, to deliver what, when, where, when to review it, how to assess it’s effectiveness, it won’t be going into Section B (Special Educational Need), or Special Educational Provision to support the need….

Now about those specialist reports… here are some stark truths for you to consider…

Under the coalition government, and on a more expedited level under this government, those on benefits the disabled have been vilified and made out to be scroungers (fit to work, for example, cutting support allowances ad-nausea)…

It is supposed to take, by law and code of practice, 20 weeks from the start of the EHCP Process to the end.

It is the duty (LEGAL REQUIREMENT) for the Local Authority to identify the needs of a child with SEN.

The reporting services are commissioned by the NHS, or publicly funded (I’ll get on to the funding next) quango’s to provide these reports and the support identified.

These services have seen massive cuts to funding over the last 8 years, to the point where a lot of very qualified and very experienced people have left those services, leaving behind cheaper, younger, less experienced and less qualified, overworked, undersupported and highly-stressed staff.

Waiting times for reports have gone up…. for example, the Autism Outreach Team (commissioned by the Local Authority to give specialist help to mainstream settings about Autism, Sensory Processing issues etc to help them make the environment sympathetic to autism and promote learning), told us in November (when they were originally supposed to go into school, despite Bl starting in September), that Bl was the 13th new case they had taken on locally this year, in addition to all the children they were already supporting… the November report is subsequently now scheduled for February and March (due to staff sickness – remember the stress I mentioned) in order to prepare a report (which is supposed to go into the EHCP which is supposed to take 20 weeks total and was supposed to be completed in June of this year, which we argued in court today)…

Phew… a lot of information… I know right?

So back to the report… as a result, it wasn’t available today, despite there being 80 pages of ABC (Antecedent, Behaviour, Consequence) sheets in the bundle which all illustrate in great detail how Bl can’t access the curriculum due to cognition issues because of his Autism and Sensory Avoidance or Stimulation issues… (remember that Autism Outreach Team above? They knew Bl was going to this school in February of last year and weren’t notified until September)…

But… going back to the school day above… it can’t go into the report because although it is evidence suggesting the behaviour/issue/need, it doesn’t have a report from a relevant, qualified professional which can be included…

Now… the good news… the plan is due to be re-assessed in a year… at which time the reports will need to be done again…

So… back to the Cuts…

We are left with the following options… either earn enough money to pay for the reports and subsequently not be there to give the consistent support and intensive interaction, speech and language therapy, sensory modulation therapy etc… or, become a full time carer (which we have done), get the training to provide those therapies (because it isn’t going to go into the EHCP because of those reports we can’t afford remember)… There’s a good bit now…

Thanks to socialism and our wonderful government, we are allowed to stay and provide 24-hour support, x 7 days a week (save for 3 hours a week respite), 365 days a year, for a wonderful £65 per week (for which we are grateful and have paid more than enough tax)…

If we turn around and say that we can no longer cope with our boys (which will not happen whilst I draw breath), our boys would go into specialist Foster Care and likely receive greater amounts of support… the Foster carers would get £420-750 per week per child, plus allowances, time off, more respite etc…

Now… I’m no mathematician, but the difference between £65 total for 2 children and £420-750 per child per week seems a lot… that would buy a lot of those reports and that therapy they “NEED”…

So… pretty please, with a cherry on top… Consider this when you are next considering who to vote for… Consider us… consider our boys… consider the thousands of others like us…

I’m done… and now I have to do it all again tomorrow!

With love!”

Thank you for reading my first blog post… I look forward to any comments, feel free to Tweet me @AsdDadAdvocate.