The UK Government Education Committee inquiry “will focus on how to achieve both short term stability and long-term sustainability for the SEND system to improve experiences and outcomes for children and young people.” January 2025.
We have submitted written evidence as parents of a 43 year old daughter with Down’s syndrome and feel that opening up the conversations, encouraging and enabling individuals and organisations to think differently is needed to “solve the SEND crisis”. We’re sharing our thoughts and submitted evidence here to encourage these next steps.
In fact, we are saddened that the whole tone of this enquiry is based around the SEND student being a burden, a problem, a basket of needs, and looking for solutions to ‘fix’ the SEND student.
We know from our personal experience that it is possible to ‘embrace, enable and empower’ SEND students by fixing the system.
As unique individuals we all have our own learning pathways, some of which will always remain closed (like science to me or basic maths to Jen), but others can be opened through creative approaches accepting and meeting students where they are on their journey through life creating an arena where all experience the joy of becoming fulfilled when given appropriate support.
‘With the right support at the right time we can go further and further and further’ said Jen in her Honorary Doctorate acceptance speech in 2024.
Context
Following my textbook pregnancy Jen’s birth was both unexpected and damned being met with a barrage of negativity from the medical profession.
Now Jen is her own person, highly respected, thriving. She proudly introduces herself as Dr Jen BEM having had an honorary doctorate bestowed on her by the University of Salford in 2024, and her British Empire Medal in 2023.
Jen is the winner of multiple awards both national and international, she is a co-founder and director of the ground breaking pioneering charity DanceSyndrome built on a foundation of inclusion and an ethos of equal opportunities for all. She contributes, inspires and continues to be a role model. DanceSyndrome is co-led by Dance Leaders who happen to have learning disabilities.
We are where we are today as a result of ploughing our own furrow, advocating for Jen and her rights under the laws of the UK, being vigilant and aware of her health and wellbeing throughout her life by listening intelligently and responding appropriately when stress or distress impacted her ability to function effectively. The underlying tenant throughout Jen’s life, our own, and that of our son’s, has always been inclusion.
Get inclusion right and you achieve belonging, a situation where every person is empowered, where every person experiences equal opportunities to contribute to society, and to be heard. This is imperative to positive outcomes for SEND students as much as for those without intellectual disabilities.
SEND students have the right to be as ambitious and aspirational as anyone else.
Aged 21 Jen coined ‘I have the right to a life of my choosing. My future lies in dance’
For Jen, without dance in the day there is nothing to get up for. With dance in her life and a willing audience to share it with, she is open to embracing other learning opportunities more willingly and ably. Jen has never been able to sit and listen to music. Turn the music on, and she is dancing.
Life as a parent of an offspring with SEN will never be straightforward, but people with SEN are human beings with equal human rights. We have found fighting for that right is an exhausting but necessary part of our everyday life.
When treated as an equal member of our communities from birth to death, seen as normal, those labelled SEN will be enabled and empowered to be visible contributors to the human race. Only then will society begin to understand and accept greater diversity.
OUR SUGGESTIONS – Short term actions:
Change the cultural norm. Schools and educational providers can challenge and change the expectations for SEND students. But it will only happen if they truly believe it should happen. If there is the will this can be achieved very quickly.
Invite ALL stakeholders to the table – staff, students, parents, siblings, governors – and supported and empowered to contribute. Many SEND students will have never been heard or listened to before, or had their views sought.
Invigorate staff and parents to think differently, be open and perceptive, open to learning from all.
Sow the seeds of hope. Many parents will not have the capability, capacity or opportunity to seek out and discover positivity themselves:
- Invite role models with intellectual disabilities to the table, local or national.
- Invite parents and carers with positive stories to share their experiences.
- Seek out innovative, inspirational charities, CICs or social enterprises
Physical behaviour and personal mannerisms MUST be socially acceptable and expected. When inappropriate behaviour/mannerisms is the accepted norm, the child is controlling their surroundings, whether at home or at school, and all suffer as a result, including the child.
- Yvonne Newbold Newbold Hope is an authority of managing distressing physical outbursts as a result of anxiety or distress.
- Personal hygiene was a significant challenge in our lives. Jen was frequently asked to ‘try again’ in order that she was socially presentable to leave the home to engage in an activity of her choice – invariably music or dance.
Reinvent spaces for positivity and creativity – new furniture, décor, engagement opportunities, methods, stimuli. All can be consulted and contribute to making and enacting the decisions, especially the students achieving ownership – taking control of their environment.
Listening is key. Only then will you have the opportunity to discover the nugget of gold inside every person. Education will only ever have any chance of success when the inner soul of the SEND student is nourished. Find it and include it in any action plan.
Embrace part time alternative provision as a potential stepping stone. Ring the changes keying into the nugget of gold inside the SEN student. Parable Dance is one fine example of this.
Community involvement – so much expertise is on the doorstep of every school – voluntary or paid for. With the community supporting the school, the SEND student will become better known, better understood, have greater chances of belonging within the community who will support more naturally. Schools reaching out to the local community will help to cross the divide lessening the social isolation of SEND students, who over time will become embedded in a more cohesive community.
Rights and responsibilities have always weighed heavy. They are a fundamental requirement. Any of us has the right to a life of our choosing including SEN students, assuming that we, including SEN students, do/contribute as much as we can as individuals to enable it to happen. Enacting this approach on every occasion draws a line in the sand that every person, including SEN students can understand. There are clear boundaries.
Assessment of SEND students MUST respect and listen to the views of the people who know that person the best. The parents/carers must be fully involved in and influence/steer the decision making process as to what/which educational provision is best for that student at that time. Educational psychologists only know so much.
Our experience:
On two occasions during Jen’s life we ‘succumbed’ to the advice of the ‘professionals’ that Jen should go into special education, aged 5 and 14. These proved to be the most challenging and difficult years of Jen’s formal education. She was floored by the ‘system’. Both lasted 6 months creating a chasm of pain for Jen and for us. Both resulted in us withdrawing from those schools, researching other more appropriate ways to afford her an education, clearing my life of other demands so that I could focus on her, knuckling under and delivering home education using her preferred languages of communication – music and dance – reaching out and receiving invaluable support from the local community.
The most successful years of Jen’s education were aged 15 – 18. Jen attended the local mainstream school. Before starting we met the headmaster who emphasized his belief that Jen should attend her local community school and that he expected her to attend full time. We countered it saying a 50% curriculum made sense to us. By the end of the meeting he agreed that we knew Jen best, as the ‘professionals’ in her life he agreed with our proposed way forward. This provided Jen with a curriculum where she could excel, sufficient downtime away from the melee of a large high school, and the additional support of dedicated skilled individuals 1:1 outside school. Jen was featured in every annual report as she exceeded expectations each year.
Huge unanticipated bonus Jen became a confident independent traveller using buses and trains by herself travelling 
between her various educational opportunities. This required taking responsibility for her personal belongings, handling money, being aware of time and transport schedules.
But the best outcome of all was the pride that she derived from taking responsibility for herself.
Aged 15 – 18 Jen was welcomed, included, happy, valued and respected, and her individual needs were met.
Key elements for SEND provision – our thoughts
Stop parallel universe. Stop marginalizing SEN students
Create an inclusive culture where all are welcome and included.
Use special school expertise in mainstream schools as a top up, not an alternative. Embed into common practice, make reasonable adjustments, think differently.
Empower, respect and value every human being gifting ALL opportunities to shine
An inclusive society allows every person to learn from every other person, SEN or otherwise. People of all abilities gain not only at school but throughout life. Society gains. SEN students become contributors to society, not merely needy recipients of handouts. They are no longer to be pitied, rather to be seen as an integral part of the whole. Our friends, neighbours, community.
Celebrate diversity, embrace difference. SEN students have qualities and attributes the rest of us can’t bring to the table. They may not be able to achieve academically but when given the right support at the right time in the right place they have extraordinary lessons to teach us all.
Unleash hidden talent from unexpected places.
Walk the walk as well as talk the talk. Flip the narrative. Check out Shaw Trust DisabilityPower100
Invite in unusual trainers to educate staff and ALL students
- Parents demonstrating the success of thinking differently, acting differently, taking risks – blackwells.biz can help
- Charities/CICs doing innovative inspirational pioneering work achieving remarkable outcomes such as DanceSyndrome, Stay up Late, Books Beyond Words, Special Virtuosi
- Individuals/role models eg. Ciara Lawrence, Dr (h.c.)Jen Blackwell BEM, Becky Rich, Dr (h.c.) Sarah Gordy, Dr (h.c.) Tommy Jessop
Listen and believe
- parents and child, to those surrounding/supporting the SEN student,
- work with them and alongside them,
- ask their advice rather than struggle
Remove barriers, glass ceilings, assumptions as to what SEN students can or can’t achieve
Following formal education
Having supported Jen through mainstream schooling, at 18 she was no longer part of a daily structure that had helped us all so much to take one step at a time allowing Jen and our son Anthony grow and develop into adults with mainstream aspirations. We all felt trapped and excluded. Jen told us, “I have a right to live the life of my choosing, and you do too”. We agreed but felt lost and confused.
We spent ten years in the wilderness searching for the right opportunities with the right support to enable Jen to be the community dance leader she’d always wanted to be. There were no opportunities, no individual or organisation who cared or wanted to work with Jen. Jen had no real friends and felt totally lost and let down by the system. We felt that too.
Jen and friend Peter celebrating
Out of frustration we set up DanceSyndrome where diversity is the norm, inclusion is the bedrock – there are no barriers, hurdles to clear or glass ceilings to break through – everybody matters and has something to offer to the conversation. Every person brings their unique assets and talents to the table taking from it what they need to nourish their soul, to flourish and thrive. Changing lives one person at a time – blackwells.biz
The model of inclusion that DanceSyndrome is founded on is one that enables and supports each person who comes into the space to learn, develop, dance whatever health issue, disability, or label they come with. Many people have complex SEN needs have completed programs many people deemed impossible….
We have always focused on what’s possible for Jen as one member of our family. Our experience shows that incredible outcomes are indeed possible when we listen to the whole person, allow their golden nugget to shine and support and enable the uniqueness of each individual to grow.
Please do share your thoughts and experiences in the comments below.
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Other links we included in our submission to the Education Committee inquiry:
https://blackwells.biz is a growing resource of information based on our experiences of life spreading hope and belief in the art of the possible to parents, educators, and society. For example
Inclusion from the bottom up – blackwells.biz ‘If you have been classified as learning disabled, the system sees doing something differently is justification for funnelling you off to that alternative universe, away from your community and society, whilst simultaneously stripping you of your basic human rights including being able to follow your dreams, choose how, where and with whom you live, in brief, to have a life of your choosing.’
Conversations that matter – blackwells.biz
Inclusion is fundamental to living – blackwells.biz
True inclusion is endemic within your practice – blackwells.biz
Leaders from unexpected places – blackwells.biz