Wanting the Best for India

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.

*There are a number of charitable organisations which support parents with funding if personally hiring a lawyer is not an option. An excellent example is www.parentsinneed.org 

Tricia x

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