Thank you Madame Deputy Speaker. I welcome the Right Honourable Member for Somerset North for introducing this very important Bill which, when passed, will lead to the establishment of a National Strategy to improve provision and outcomes for all those living with Down syndrome in England.
The Bill will legally recognise people with Down Syndrome as a specific group, ensuring they are protected along with other minority groups.
Like the Autism Act 2009, the Bill will ensure that people with Down Syndrome have their specific needs met by public bodies, rather than being treated similarly to all other disabled.
The Down Syndrome Act will go further than the Autism Act 2009 which preceded the establishment of a National Strategy to help meet the needs of adults with autistic spectrum conditions in England. The Down Syndrome Act will identify needs in all areas, for all individuals with Down Syndrome across the whole of the UK.
The National Down Syndrome Policy Group, in coalition with the All-Party Parliamentary Group for Down Syndrome, has been lobbying for a long overdue Down Syndrome Act and have released a film featuring some of their Trustees who have Down Syndrome, highlighting some of the areas where they hope to see positive change in the future.
Current government policy focuses on recognising and addressing the inequalities (and premature mortality) of people with learning disabilities. Policy does not differentiate between different parts of the population except where there is clinical justification – we saw during Covid that people with Down Syndrome are particularly at risk from the disease and classed as Clinically Extremely Vulnerable. The aim of the Bill is to ensure that people with specific challenges caused by Down Syndrome are given the right support by local authorities which are to be given guidance on appropriate steps to take to meet specific need. This builds on the Government’s stated commitment to improve outcomes for people with a learning disability.
In 2021 we really do need de-stigmatise Down syndrome and to re-educate the public and professionals about the advances, including in life expectancy, that have occurred in recent decades. Life expectancy now far surpasses what it was in the past and people with Down Syndrome can live past 60 years old – outliving their parents which must give their parents so much anxiety as to who will support their child with Down Syndrome when they are no longer alive to do so.
Currently, it is rare for children with Down Syndrome to attend a mainstream school (only 1 in 4) due to a lack of support; the majority are automatically sent to a special school.
When I was in my early teens, my mother spent a couple of terms as a supply teacher at a special school in Hexham, Northumberland. She absolutely loved it; loved her pupils and loved teaching them. She found it so rewarding and such an honour to teach children with a variety of intellectual and learning disabilities. We were lucky that she had the initiative to get her daughters in to visit from time to time, opening our eyes, minds, hearts and souls to those who may not be quite the same as us, but who are still very much loved and valued members of our society. It also taught us that people are different and this is what makes us all so special as human beings. We all want equal opportunities, for people to believe in us as individuals.
This Bill will place a requirement on every school to meet the needs of pupils with Down Syndrome - giving them a choice about which school to go to. As society (perhaps too slowly) becomes more inclusive, life is changing for people who have disabilities, including Down Syndrome. Mainstream education is becoming more common, and this has brought considerable benefits to all children. There is no doubt, however, that it can be challenging at times to include a child who has Down syndrome in the classroom, as it can be for any child with a learning disability.
Teachers would need improved training to better understand the condition , including helping pupils with Down Syndrome to improve their speech and language and helping reach their optimal communication - and ensure that all children can access the curriculum.
Down syndrome is a chromosome anomaly caused by the presence of all or part of an extra 21st chromosome which affects around 750 babies in the U.K. each year.
There is considerable individual variation in people who have Down syndrome. However there are also a number of common features. These include:
• intellectual disability,
• cranio-facial anomalies,
• speech and language impairment,
• low muscle tone,
• increased incidence of various medical and sensory issues, including hearing, vision, heart and thyroid disorders. (Bull et al, 2011;DSMIG)
These and other aspects of Down syndrome will be likely to impact on a child’s ability to access the curriculum and this is why teachers need to have access to training to ensure that all children are given equal opportunity to access the curriculum.
Children with Down syndrome should have the right to be educated in their local school, and to be given appropriate support to enable them to access the curriculum and learn effectively. Research shows that mainstream schooling has better outcomes for children who have Down syndrome and that students with Down syndrome gain academic, social and behavioural advantages from being educated with their typically developing peers in mainstream schools.
Parents of young children with Down’s syndrome should not have fight local authorities for an Education and Health Care Plan. It is shocking that there are children with Down’s syndrome (which is a well-known learning disability with a well-known need for good, early, educational intervention) without a full-time EHCP, or even without one at all. Not having a Plan means the right provision or support system is not available - even none at all.
With appropriate support and accommodations, students with Down syndrome can benefit from mainstream schooling, and inclusive education has benefits for all students.
My daughter, who is now adult, had the joy of going to primary school with a classmate who had Down Syndrome. She enriched her classmates lives and, as they all got older and started to notice that she had Down Syndrome, they did not treat her any differently; to them she was her and absolutely perfect as she was - someone they had happily grown up with. As they got older it also helped them to be more caring and considerate. Unfortunately their friend was not allowed to stay with her friends beyond middle school age. This was not only sad for her and her family, but really was a loss for her friends - and the school’s loss.
The Bill will ensure that current provision of services is improved, whether provided by health, education or local services, by ensuring that providers give due consideration to those with Down syndrome when designing service provision.
The Bill looks ahead and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents.
I also want to highlight the lack of job opportunities for people with Down syndrome (and other learning disabilities). There are around 40,000 people with Down Syndrome living in the U.K. and only 6% are employed. In its October 2016 Green Paper, Improving Lives, the DWP states: ‘The evidence is clear that work and health are linked.’ It said that there are 1.5 million people in receipt of the Employment and Support Allowance benefit, yet acknowledges that there is little practical support to help them into work. In July this year the DWP published its Health and Disability Green Paper ‘Shaping Future Support’. The consultation lasted 12 weeks and detailed proposals are to be brought forward in a White Paper in 2022 setting out how the DWP can ‘better enable people to take up work and live more independently’.
6% of people with Down Syndrome are employed. Only 6%.Think of the isolation and loneliness that the 94% must feel. I would like to take this opportunity to thank Little Gate Farm for all the work and support they do with people with learning disabilities near me.
This Bill will aim to improve employment rates for adults with Down Syndrome. We need to unleash the potential of everyone including people with Down Syndrome to give them the opportunity of showing us all what they truly are capable of and ensuring that they get the same chances as everyone else.
This Bill is welcome and I am aware that councils, including ESCC, play a key role, working with voluntary and community groups and schools in supporting people with Down Syndrome to help them live the lives they want to lead with the right support. We must remember that local authorities will need extra financial support in respect of the additional duties set out in this Bill – in line with the new Burdens Doctrine and I welcome the confirmation from the Department of Health and Social Care that new guidance on the needs and effective support of people with Down Syndrome will be in consultation with stakeholders, including local government and a new burdens assessment will be taken before finalising any guidance.
This is about levelling up – about levelling up individuals. It is right and just to give people with Down Syndrome recognition of their specific needs and give them the dignity of a human person. It is never too late to be who you want to be and never the wrong time to do the right thing.