We offer this case study, as grandparent/ kinship carer’s, in the hope it will inform and assist others on a similar journey. Our grandson’s name is changed to protect his identity.

Our EHCP process became adversarial very early on when the refusal to assess our grandson, back in December 2016, placed us in an oppositional position to the Local Authority SEN team from the outset. We believe, on the basis of our experience, that there is a dominant and concerning narrative of “difficult families” that is preventing effective dialogue between parents and officials during the EHCP process.

Our grandson has a number of diagnosed health conditions, and like many children with Autism, the diagnosis took a number of years to be made. Benjamin is 9 now and the Autism diagnosis came shortly after his 7^th birthday. His special educational needs include:

• autism and associated difficulties with, receptive language, social communication, including inappropriate social interaction, inflexible thinking;

• nystagmus

• strong sensory needs

• underlying sensory processing and sensory motor difficulties;

• significant attentional problems; and

• persistent high levels of anxiety;

• an anxious avoidant attachment pattern;

• likely Alcohol Related Neurological Disorder

In 2015, (beginning of Year 1 for Benjamin) school raised concerns, mostly about Benjamin’s behaviour. A paediatrician (who we had asked to be referred to by the GP, because of previous involvement with Benjamin), identified that Benjamin’s difficult behaviour at school was most probably symptomatic of his underlying needs not being met. Various referrals were made and an Educational Psychologist’s assessment was recommended, which was commissioned by school. This assessment suggested that consideration should be given to an Education Health and Care (EHC) assessment. Around this time, we also made contact with an independent team at our local Carers Centre who support Carers with the EHCP process. The team agreed to contact the SENCO at Benjamin’s school in an attempt to make progress with an EHCP assessment. The first set back came when we received an email from the school SENCO to say that requesting an EHCP assessment was “not appropriate at this stage. Should it be deemed appropriate to request an EHC assessment, an “Assessment Planning Meeting” was set for early in the Summer Term 2016 (towards the end of Year 2).

By November 2016, when Benjamin was finally diagnosed with Autism, he was struggling greatly with the dynamics of a mainstream environment, and the demands of the primary curriculum. His persistent high levels of anxiety and sensory needs were not recognised as triggers to his challenging behaviour at this stage. Benjamin was working well below age expected levels and appeared agitated in a classroom environment. He was finding it increasingly difficult to participate or engage in age appropriate activities and was becoming increasingly isolated from his peers.

The school accessed support via the Autism Outreach Team, Speech and Language and Visual impairment team and significant adaptations were made. Despite these efforts, Benjamin’s attainment and progress levels in in key areas of learning were very slow, and some areas regressed.

The “Assessment Planning Meeting” set for early in the Summer Term 2016, actually took place 6 months later in October 2016, half way through the Autumn Term in Year 3. The unanimous recommendation by all around the table was that school should apply for an EHC assessment for Benjamin. This was finally requested in November 2016.

Benjamin was by this stage on a reduced time-table due to heightened anxiety and frequent meltdowns in school. But in January 2017, we had another setback, in the form of a letter from the Local Authority stating:

“It was felt that is not necessary to carry out an assessment of Benjamin’s special needs at this time…it was recognised that since February 2016, Benjamin has experienced difficulties at school. However, due to his complex presentation, in order to carry out a full holistic assessment of his needs, it is felt essential that specialist advice and support is required from the Children’s and Young People’s [mental health] Service (CYPS).

Since Benjamin had been on the referral list for CYPS for 5 months by this time (the GP first made a referral in July 2016), we swiftly launched an appeal against the decision to not carry out a statutory Education Health and Care (EHC) Assessment on the basis that there was sufficient evidence to suggest that Benjamin does have special educational needs and may need an EHC plan. In the meantime, we continued with informal efforts to reverse the decision not to assess, including a letter to the Director of Education and our MP.

Once Benjamin had been seen by a Community Psychiatric Nurse for an initial assessment by CYPS, in February 2017, the LA finally agreed to an assessment of Benjamin’s EHC needs. The assessment concluded at the beginning of April 2016 and the first Support Panel Meeting took place at the end of the month. At this point, not all of the statutory advices had been received and properly reflected in the initial draft for discussion, and the case worker from CYPS was not available to participate. We considered that there was too much emphasis upon Benjamin’s behaviours and the use of self-regulation strategies, and not enough on the learning environment.

The Draft EHCP was issued at the beginning of May 2017. We still felt that Benjamin’s complex needs were not adequately captured especially in relation to his attachment issues. As a result, the outcomes (sections E) read as behaviourist and functional and the section on provision (Part F), was inadequate. After a second meeting, in June 2017, we still felt that our central criticisms of the initial draft had not been addressed. The plan did not reflect that the complexity of Benjamin’s presentation and needs, and at this second meeting, we felt the stagnation and regression in Benjamin’s learning, particularly in literacy and areas of cognition, was being played down.

The Local Authority issued Benjamin’s final EHCP in July 2017. We disagreed with Parts B, F and I. Unable to make progress in two meetings, and feeling our views were disregarded, we bypassed the opportunity for mediation and submitted an appeal to Tribunal on the following basis:

• The EHCP did not reflect a comprehensive understanding of how Benjamin’s co-existing physical, etiological, sensory and emotional and conditions combine to present in a very complex set of learning difficulties, triggers, vulnerabilities and needs.

• The EHCP emphasised Benjamin’s behavioural difficulties. Central to our concerns was the lack of insight into Benjamin’s attachment pattern.

• The named school was generic SEN and could not provide a specialist approach to Benjamin’s ASD and co-existing, complex difficulties. The school is a traditional large, unwieldy building that Benjamin would find incredibly difficult to navigate and not a particularly calm nor nurturing environment. The daily journey would be very stressful.

We believed that the whole situation would result in Benjamin being too anxious to learn, and we would have to deal with the fall out of his stress.

In September 2017, the LA agreed to amend Section I of the EHC Plan with our choice of school. However, they would not to allow a transition to take place until Sections B and F of the EHCP were resolved.

We then invested around £5,000 in fees for expert assessment reports (Educational Psychology, Occupational Therapy and Speech and Language Therapy), and for legal advice in the lead up to the tribunal. Our family income was marginally over the threshold for Legal Aid. Benjamin’s post-Adoption Social Worker commissioned a Consultant Clinical Psychologist, who subsequently confirmed that Benjamin has an anxious-avoidant attachment pattern and this was corroborated by the Speech and Language Assessment commissioned by us.

The Special Educational Needs and Disability Tribunal

By the time of the Tribunal, Part B of Benjamin’s EHCP, detailing his Special Educational Needs, was more or less agreed between us and the local authority through “the working document” process (where parties send the EHCP back and forth until they can reach agreement).

We funded two expert witnesses, the Speech and Language Therapist and Educational Psychologist to represent Benjamin’s needs at the Tribunal.

The pre-tribunal information pack sent to us stated that:

“The hearing is conducted in a relaxed way. At most venues the panel and parties sit around the table with the panel facing both parties.”

However, on the day of the Tribunal, this was not the case. Although ours was the only hearing in the Court building that day, it was heard in a very formal, large court room. The judge and panel members and each party seated separately and distanced from each other. This was not what we had expected and it unnerved us from the outset. One of the expert witnesses passed us a note to say that they should call the Judge “Sir”. We felt as if we were on trial.

All of the independent advice we received in the lead up to the Tribunal hearing suggested that the Judge would have respect for our position as Benjamin’s carers, yet this was definitely not reflected in our actual experience.

The Judge then asked why we wanted Benjamin to go to the school named in Part I of the EHCP. Upon our response, the Judge then asked why the head teacher of the school had been withdrawn as a witness. We explained that we had informed the Clerk to the Court that we had withdrawn the head-teacher as a witness on firm legal advice that is was no longer necessary for her to be there as the Local Authority had agreed to name the school in Part I of the EHCP. The Judge said that that given the school were the ones who would need to deliver Benjamin’s EHCP, then the head-teacher should be present and went on to suggest that he might have to reconsider the named school as they may not be able to deliver it. We had no idea that the Tribunal Judge had the power to change Part I of the plan at the hearing, when it was already agreed by both parties, and the realisation that he could do this left us feeling anxious. Further issues that were agreed by both parties were questioned by the panel, which added to our unease. The Judge directed both parties to take a break from the hearing to agree and to shorten Part F into a more workable document. By this time, Benjamin’s grandmother, generally a confident and assertive person, was feeling shaken and intimidated. As we entered the very final negotiations, probably for the first time in the whole process, our resolve was shaken. We felt we faced the dilemma of either contesting or conceding, when both carried the risk of letting Benjamin down. Fortunately, the two expert witnesses we funded were able to represent Benjamin’s needs in the informal negotiations that took place outside of the courtroom.

Ultimately, both parties put their positions to one side and worked solidly as one group for four hours to amend and improve Part F of Benjamin’s EHCP. Part F was almost rewritten and fairly extensive changes were also made to the outcomes in Part E.

Two weeks from the Hearing we received a consent order issued by the Judge for Parts B and F. Benjamin started his new school ten days later. He is settling in well.

Reflecting on the Tribunal it proved to be absolutely critical to have two of our expert witnesses at court with us not just for their knowledge of Benjamin and his needs and requirements, but for their insights, and kindness, that helped us through an otherwise excruciating day. One of our expert witnesses suggested that the Judge was trying to be helpful in terms of us coming up with a workable document. However, we felt that the balance of assumption was that we had been the main protagonist of the difficulties, and not the Local Authority. We had originally suggested a shorter set of smarter outcomes, a more meaningful Part F and made many other suggestions, yet our efforts and suggestions were completely disregarded by the SEN Team. Ultimately, despite his indifference to our enduring struggle, the Judge did initiate a process and provided a space where we could pool our resources and work collectively and creatively to come up with a workable plan. But his somewhat caustic comments about the length of the plan: “by the time your appendices are added, it will be so long that no one will ever read it”, wholly disregarded the significant emotional, physical and financial cost to us of ensuring Benjamin’s needs were properly addressed, and the high quality of the assessment provided by the experts that we had funded and commissioned.