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.
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
Dear Parents In Need
Parents in Need kindly funded an Educational Psychology assessment with Ann Baumber for our 5-year-old son Tobi. Tobi has Down’s Syndrome with complex needs across all domains including: sensory, visual, hearing, motor and cognitive. Our NHS reports did not reflect his needs and made very limited recommendations for his provision. Ann did an amazing and very thorough job of bringing this all together and thinking about the consequences for his education and psychological needs.
Ann made recommendations for provision I didn’t know to ask/fight for, for example additional hours for Tobi to have a TA for planning and resources, but most helpfully she recommended a specialist teacher should visit the school each half term to advise on how the curriculum should be adjusted for him. We are so grateful for this as we feel this specialist guidance will make a huge difference for Tobi and the mainstream team who are supporting him.
Words don’t seem enough but we would like to say a huge thank you to PIN, as we would not have had the financial means to have funded Ann’s assessment. As parents, we have learnt a lot from Ann’s expert assessments and how better to support Tobi, however the best part about our story is that with your, Ann’s and SOS!SEN support we WON our tribunal in December. Tobi now has weekly SLT, Weekly OT, a specialist teacher each half term and dedicated support for 32.5 hours whilst at school. Tobi is now in two-term into his first year at school and is loving it. He has made friends and the school is learning how better to support his complex needs. We are very grateful for all the support that has been given to make sure that he has the best start in his schooling years.
Joanne Hurford, Tobi Lasso’s Mum
Dear Parents In Need
We would like to express our sincere appreciation to you for everything that you have done for Mary and our family. As parents who have a child with special needs we are often put in the position of feeling like it’s “Us” against “Them” but you have made those feelings go away.
Thanks to PIN Mary is now happily settled into her new school and we have PIN to thank for that. The generosity you have shown has gone far beyond the financial means but also one of kindness and compassion. You were there for us just when we needed support and because of this Mary’s future is so much brighter now. Your support has been immeasurable. Thank you so much for everything!
Mary and Family
“Poppy is almost 9 years old. From the age of 18 months I was concerned with her lack of speech progression. Local services kept turning us away, in total – six times!
We were eventually seen by an amazing multidisciplinary team at the Evelina London who diagnosed Poppy with severe developmental language disorder.
We then began the lengthy process of applying for an Education, Health and Care Planfor Poppy which was granted first time around. When the lady from the LA called to tell me, I remember thanking her and saying ‘this is going to change Poppy’s life’ I laugh at my naivety now.
The Local Authority named a school without even consulting us – this school was forced on us without any knowledge of our rights as parents. Poppy began in Sept 2017. She remained at this setting for almost 2 years, until I withdrew her in July 2019 after her mental health took a drastic decline.
In this setting she was bullied, left in soiled clothes, medication forgotten and missed Speech and Language Therapy appointments due to the staff having days off in term time. In Nov 2018 during an emergency annual review at her school – I was told that Poppy was progressing, and all of this was in my head – they had safeguarding concerns.
I left that meeting with the heaviest heart, my mental health began to deteriorate to the point of suicidal thoughts. I was desperate and I didn’t know where to turn. I made a call to SOS!SEN and Jill answered. And I cried, and cried as I explained what was happening.
And that’s when a miracle happened. Jill spoke with Parents In Need who agreed to fund an Educational Psychologist report although it turned out that we needed an Occupational Therapist’s report and a Speech and Language Therapist’s one too which Parents In Need also generously agreed to fund. Moor House school, which specialises in speech and language, offered Poppy a place. At last she was going to get the support she needed.
Roll on one year, after a lot of rejection from the Local Authority – we were forced to go to tribunal. The hearing was postponed, then adjourned and then finally held by a judge who ordered Poppy back to the same school against all the advice from the expert witnesses.
We’ve been advised that there are clear errors in the decision and we are appealing against it which could mean having to go back to tribunal. Our nightmare isn’t over yet, but I am prepared to go through it all again. I feel so much stronger now because I am so supported by Moorhouse School, by Parents In Need and by SOS!SEN.
I believe in guardian angels – and Catherine, Jill, Marion and all the other amazing ladies in our team. I know Poppy will get to where she deserves because these guardian angels will, if necessary, carry her there.
From the bottom of my heart – thank you.”
With all of our love Laura and Darren, Poppy and her big sisters Mollie and Emily xxx
“Thanks for considering my application, it would be great to get some help, I really am at breaking point now I’ve literally no reserve left in the pot. Will all be worth it if I can get Harry into the right school”.
“Harry is absolutely loving school, it’s already given him loads of confidence, he’s not the bottom of the class anymore he’s enjoying sports, something I never thought I’d hear him say, he’s finding new independence, he got the most house points in his class at the end of his first term and won a voucher, he’s absolutely thriving, it’s everything I hoped it would be. His first parents’ meeting was amazing too, the teachers couldn’t say enough good things about him and he always tries really hard even if he doesn’t like doing something. Life is good!”
“I cannot stress enough how reassuring it felt to have a charity like Parents In Need in my corner during the tribunal process. The advice and help was invaluable – but there is also a strong sense of camaraderie when you find yourself involved with PIN. I hope that many more families will be able to benefit from PIN the way that I did.”
“I am at breaking point. I am about to embark on my third tribunal to get my daughter Mollie, aged 10, into special school. Mollie has a long standing history of reflex anoxic seizures which meant prolonged episodes of hypoxia which they suspect has caused a significant brain injury. She is currently 4 years behind and is extremely vulnerable. I have already spent in excess of £2,000 on private reports and am about to do the same in January. However I cannot afford SALT, OT and EP. I am a part time oncology nurse with 4 children and my husband’s business has come across hard times.”
Several months later…
“WE HAVE WON! Surrey conceded this morning and Mollie will be going to Moor House in September. Without the help of the PIN I couldn’t have done it so THANK-YOU! We are just so incredibly happy and relieved! Parents in Need helped me to access and fund the best private therapists who would be able to assess Mollie from top to toe, left to right – I knew they were the ones to leave no stone unturned. Without their help we wouldn’t be where we are today!
Several months and lots of tears later, I am beyond elated to be a Moor House Mum. Moor House is a specialist speech and language provision with smaller classes and intensive therapy delivered by specialist teachers, which will give Mollie every chance for a positive future.”
“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.”
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.”
“I am just emailing to say thank you so much for your help with getting the specialist reports that was needed for my son’s appeal.
If we didn’t have them we would of had a very different outcome. As it is we have now been awarded a placement at a specialist school and the changes on his EHCP that we wanted. This is going to make the world of difference to my son’s education, his mental wellbeing and it will have a very big impact on our family life for the better as well. Thank you so much, your help is so greatly appreciated. I don’t know what I would have done without the support from PIN and SOS!SEN.” Many thanks.”
“Just a little update, tribunal was Thursday and they have just adjourned it. I think they forget a small child actually behind all that paperwork. Sad isn’t it. Like to keep in touch as couldn’t do this without PIN”.
From our sister charity SOS!SEN
“I saw yesterday a lovely family from Kent. The daughter is nearly 12 and quadriplegic with cerebral palsy. She cannot speak and has to access the computer with a joy stick. Parents went to Tribunal last Summer but without evidence. They could not believe that their daughter was to be sent to mainstream school.”
And from another parent in need
“Each individual who has supported the charity won’t know the difference it will make to my daughter and our family. Thank you PIN so much for your kindness. At least we have a fighting chance to get my daughter what she needs and she won’t be another child suicide statistic. This help has given her a chance to learn to love her own strengths and to love herself again.”