Wanting the best for India

By Tricia Cusden
founder of Look Fabulous Forever and supporter of Parents In Need

I have always believed quite passionately that the degree of humanity in any society is best measured by how kindly it treats its most vulnerable members. Thankfully attitudes to people who are mentally and/or physically disabled have shifted dramatically in the past few years and we no longer routinely lock children like my 11-year-old granddaughter India away in institutions and throw away the key.

Pockets of prejudice will always exist like the (so-called) friend who said when India was born “Children like her are like dogs, fine when they are puppies but not so attractive when fully grown”. Needless to say, I was so appalled at her heartlessness that I never spoke to her again.

However, her attitude was a timely reminder that having a child with a range of complex mental and physical needs is never going to be easy.

Not only will you have to cope with the impact of those disabilities on the child, you and your family life, but you will also have to battle for every last little thing that the child will need to reach her full potential, however limited. India is about to take the giant step of moving to secondary education. This will be her bridge to whatever independence she is able to attain as an adult. It is therefore absolutely critical that she spends the next eight years in an environment which is as supportive of those complex needs as possible.

India was born quite randomly and totally unexpectedly with a rare chromosomal disorder. Put simply, she has too much DNA on one part of her 18th chromosome and not enough on another bit. The mental and physical impact of this is perfectly summed up in a recent assessment from an educational psychologist: “India is an engaging 11 year-old girl with complex special educational needs. She is currently thriving in a vibrant, multisensory total communication environment, where all adults use sign-supported English. She is an enthusiastic group learner and curious about her environment. Her barriers to learning include speech and language, attention, visual, fine and gross motor and physical needs”.

These barriers are clearly very significant as she moves to the secondary level of her education. An occupational therapist summed them up thus: “India must continue her education in a supportive, predictable, well-structured low arousal, residential educational placement. She needs a waking day curriculum (i.e. one that lasts beyond the school day) to learn and generalise the independence and life skills she badly needs to live as independently as possible”. All well and good, but could India’s mum, Suzy find such a school and, more importantly, would the local authority allow the funding for India to attend it? This is the story of the year-long fight that my daughter has just had in an attempt to achieve that outcome. Last week, on May 3rd, she received the phone call which would make or break the hopes that we have as a family for India’s future prospects.

For a child like India everything depends on her EHCP or Educational Health Care Plan. This sets her educational needs into a legal framework and specifies what the state must provide in law to satisfy those needs. This vital document should be updated via annual reviews to which representatives of the local authority are invited, but routinely do not attend. Suzy’s first hurdle in February 2022 was therefore to get India’s EHCP revised from 2016 (when India was only 4 years old) so that it included her latest assessments. Without this a smooth transition to an appropriate secondary school would be impossible. It was at this point that Suzy entered a somewhat Kafkaesque bureaucratic nightmare which took most of 2022 to resolve.

I know that I’m very prejudiced, but my daughter Suzy is intelligent, efficient and highly organised but even she was reduced on many occasions to tears of frustration and impotent fury as she struggled to get India’s EHCP updated. There were endless revisions as reports were sent back and forth between her and her case worker. Chunks of vital information would go missing as statutory deadlines came and went and were never met. There was a change in caseworker during the process and they were rarely responsive to the dozens of telephone calls made or emails sent by Suzy in an attempt to get answers to queries and questions. In some degree of desperation towards the end of last year, when the EHCP was still vague and full of inaccuracies, Suzy and her husband decided to enlist some legal help.  By then Suzy had found the school she felt would be the very best fit for India’s complex needs, but was convinced that the local authority would refuse to fund it by reference to the wholly inadequate EHCP.

Finding an appropriate school had also proved challenging. Suzy’s criteria were straightforward: “The most important thing for me was trying to visualise India there, being happy – would she have friends, would she be able to understand the methods of communication, would the staff be able to engage with India and ‘get’ her? Would she have a full, busy day and be able to access the delivery of the curriculum?”  Initially, Suzy was guided in her choice by India’s current (excellent) school in Surrey. Her Speech and Language teacher came up with five suggested options which might best meet India’s specific needs. Four out of five of the schools are non-maintained, which means that they are usually managed privately or by charitable organisations and are non-profit making.  These schools are independent of local authority control.  The local authority does however usually fund the cost of the child’s placement at a non-maintained school, if the needs of the child cannot be met at a state school.

You’ll be as heartened as I was to hear that all five of the schools that Suzy visited impressed her with the quality of the education that they were providing. She found a high staff to pupil ratio, with speech and language and occupational therapies integrated into the curriculum, and staff that really seemed to care. “I felt lucky that I potentially had a choice between five very good schools. It was just about finding the right one for India where she’d fit-in and get the life-skills curriculum that she needs.” India also had the chance to visit and stay overnight at schools offering residential placements from Monday to Friday. She had a great time and, happily, the one which Suzy decided was the front-runner offered her a place.

All that remained now was the considerable hurdle of winning the tribunal which was set for May 5th. At this, the lawyer would argue for our choice, whilst the local authority intended to push for a more local school which Suzy had dismissed because, whilst good, it caters almost exclusively for deaf children and mainly uses British Sign Language. India is neither deaf nor has she learnt BSL, so Suzy felt very strongly that she’d be floundering, confused and frustrated from Day One.
I am very pleased to tell you that this story of painstaking perseverance, refusal to be frustrated by bureaucratic inefficiency, combined with Suzy’s dogged determination to secure India’s future, has a happy ending. On May 3rd the lawyer phoned Suzy with the brilliant news that the Local Authority had decided to agree funding for our preferred choice. Suzy called me moments later in floods of tears which I must admit to shedding myself too. The relief we feel as a family is immense. We all love this rather special but utterly delightful child so much and just want the very best for her as she moves towards the next vital stage of her life. So, Good Luck India!  We all hope that you’ll be really happy at your new ‘big school’ and that you will learn all those life skills you will need as a very special adult.

Tricia x
 
*If personally hiring a lawyer is not an option you can apply for help at www.sossen.org.uk or www.parentsinneed.org

Isla and Skye

Dear Parents in Need

I just want to thank you for all your help over the last few years.

Although 2020 was a difficult year for many. For my family it was life changing. As the pandemic took hold and the schools started to close, we found ourselves like every other parent, attempting to home school.

Our daughters Isla, now aged 10, and Skye, aged 8, both have complex special educational needs including Autism with a PDA profile, ADHD, Dyspraxia, Hypermobility, OCD, Emetophobia, and severe sensory processing disorder. We also have a 4-year-old daughter Cali, who is currently on the diagnosis pathway.

Just as we entered the first lockdown, Isla’s Educational, Health and Care Plan was under annual review and Skye was just beginning the same process, which proved extremely difficult as the Local Authority only agreed to Educational Psychology and Occupational Therapy assessments remotely via Zoom. Without an EHCP a child or young person cannot access the support they need.

By the time July 2020 came around, we had two final EHCPs in place but they weren’t reflective of either girl’s needs and unfit for purpose. My incredible wife Charlene instantly knew we would have to appeal both of them as it was very clear that they would need a specialist school placement, with Isla’s anxiety causing crippling stomach pains and vomiting and Skye spending each day colouring at a desk in the corridor as she couldn’t cope with the sensory environment and demands of a mainstream class of 32 children.

Since falling pregnant with our youngest, Charlene has been very unwell after complications from surgery, Pulmonary Emboli, Lupus and Sepsis which have left her lungs damaged and spending a lot of the last 2 years shielding on government advice.

Due to the changes in my wife’s health and the needs of our family, I had to put my career on hold and for the last 5 years have been a full-time carer.

Financially we weren’t in a position to afford the assessments required and after many sleepless nights searching for a solution, we were put in contact with Parents In Need, and sent a rather lengthy email explaining the situation we were in.

It wasn’t long before we heard back and after exchanging several emails, we started the tribunal process for Isla and Skye which included Speech and Language assessments for both girls that were generously funded by PIN. This was the first time Isla and Skye underwent Speech and Language assessments as the Local Authority had always refused us despite our many requests.

In November 2020, both Isla and Skye were excluded from their mainstream school due to their anxiety related behaviours. That same week they both started their PIN funded Speech and Language assessments with Juanita Hurley. During these assessments we discovered just how much support Isla and Skye would require going forward. Juanita produced thorough tribunal standard reports of just under 50 pages each, going into detail about the girls’ specific needs and what placement would be most appropriate.

Almost a year later, in July of 2021 the Local Authority conceded the day before tribunal on both cases due to the evidence provided highlighting the girl’s needs, allowing us to secure placements at two independent specialist schools with weekly 1:1 Speech and Language sessions.

Without the help and support from Parents In Need, my family wouldn’t be in the position it is today and the impact this has had on us all is just incredible.

We want to say a big heartfelt thank you to Parents In Need.

Jas and Charlene Halsey
Parents of Isla and Skye

Thomas

“I can’t thank Parents In Need enough for the support they have offered me during this process. Already through your support of Thomas, it has been possible to identify needs that have previously been missed or ignored even though I have voiced concerns about them. We are now getting a much more detailed view of Thomas and how best to support him as he continues through education.”
Kim

Some months later

“I am so pleased to tell you that the hearing for Thomas went ahead at the beginning of March and we won about 95% of what we were asking for. I have to say that I don’t believe we would have been as successful as we were without the evidence provided by both of the expert reports that you funded for us. Throughout the hearing evidence given from our experts showed that Thomas has truly been misunderstood and looked over through the last 5 years at school. The recommendations from both the education psychologist report and the speech and language report have now been included in Thomas’ EHCP and include weekly speech and occupational therapy and specialist dyslexia teaching and it has been agreed to finally add Dyslexia to his list of needs.

I can’t thank you enough for all the support you have given throughout this whole process, it’s been so overwhelming and stressful but it’s been made better knowing there are organisations such as yourselves out there who are willing to help and support.”
Kim