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down syndrome bill

is a good start, we want to encourage work. I do hope that other countries will “Most people with learning disabilities
bigger action. take inspiration from the Down Syndrome experience similar challenges with
Down syndrome is a thing, distinct from Act and create their own versions, and I’d maternity, education, employment, health
any other thing – an identifiable genetic like to help with those, too. n care and social care, not just people with
condition that can lead to some basic l National Down Syndrome Policy Group: Down syndrome.
common needs requiring specific support https://ndspg.org/ “We are people with different learning
and interventions. disabilities. All of us have experienced
For example, there is a learning profile Fionn Angus is a self-advocate and challenges with education, employment,
specific to Down syndrome, typically researcher and lobbyist with the National healthcare and social care.
requiring specialist speech and language Down Syndrome Policy Group “Many of us have experienced prejudice,
intervention. Children and young people which prevents us from getting paid work,
experience greater hospitalisation and for or have felt unwanted in a workplace.
longer periods, and adults are More on the bill “Many of us have negative experiences
predisposed to early-onset Alzheimer’s. l BBC news report: https://tinyurl. of school which impacted our education.
Nearly everyone can identify the com/2p9y38ee “Why are our rights and entitlements to
characteristic appearance of Down l Down’s Syndrome Association: good care, support, education and
syndrome. In the past, there was a lot of thoughts on the Down Syndrome employment not protected by this bill?
stigma, and there still is. The main Bill: https://tinyurl.com/mumkeycz “For these reasons, we are concerned
ingredient in stigma is ignorance. l Mencap: statement on Down about this bill.”
I believe this law will, along with the Syndrome Bill: www.mencap.org. Learning Disability England believes all
more quantifiable effects, dissolve much uk/blog/down-syndrome-bill people with learning disabilities should
of that stigma. That’s something we can l Special Needs Jungle: what’s the have a good life. More unites us than
all celebrate. point of the Down Syndrome Bill? divides us. Members want to see the laws,
Virtually everyone with Down syndrome One parent’s view, plus a legal policies and guidance we already have
is labelled with learning disability, but opinion: https://tinyurl. used properly.
learning disability isn’t actually a thing. It’s com/2s3nbhy5 The Down Syndrome Bill will not
a way governments lump together people change the laws we have now. It will
on the margins. Lumping sometimes helps offer guidance to local authorities. The
people, often not, but it’s always a bit ‘Everyone with learning disabilities people writing the guidance will have a lot
arbitrary and changeable. should be treated equally’ of power.
In the same way that the Autism Act Self-advocates from Learning Disability Members have said it is important that
2009 aims to address the needs of a England respond people with lived experience are at the
distinct group of people who have a wide heart of developing any guidance. And
profile of experience, it makes sense for s a membership organisation, that it should be based on the views of
policy to address the needs of people with Learning Disability England people with learning disabilities.
Down syndrome as a distinct group. Aconsulted members about the Learning Disability England wants the
This legislation has evolved beyond that Down Syndrome Bill just before its second government to commit to making the
one, though, as it addresses not only reading in November 2021. guidance in an open and inclusive way.
adults but children as well. Down A group of members with learning What is important now is for everyone to
syndrome is as different from autism as disabilities said: “While we think the bill is focus on genuine co-production, with
foetal alcohol syndrome is from Turner a good idea as people with Down people with learning disabilities at its
syndrome, or as different as brain injuries syndrome do need to have their rights heart, to create the guidance together.
are from mental health challenges. protected, we are worried it is not inclusive The government has just published the
This bill is focused on clarifying and to everyone with learning disabilities.” People at the Heart of Care: Adult Social
enforcing provision that should be More than 100 individual or Care Reform white paper. This is based
available across a range of disabilities. It organisational members took part in the around three key objectives: people have
should actually benefit people with other consultation and, while some supported choice, control and support to live
disabilities as, with greater recognition of it, the majority were concerned or independent lives; people can access
the specific needs, there will be a greater opposed for this reason. outstanding quality and tailored care and
Wessex Regional Genetics Centre/Wellcome Collection CC BY 4.0
awareness of the need to adapt provision. However, that does not take away from support; and people find adult social care
Many of my friends with a variety of the huge achievement of those involved fair and accessible.
living experiences of disability support the with the bill in highlighting inequalities Learning Disability England wants the
Down Syndrome Bill although it is not and the need for change. government to make sure councils and
focused directly on them, in the same way The members’ group said: “We looked the NHS have enough money to support
that I can work for racial equality, support at the easy-read guidance for the Down all people with learning disabilities.
victims of domestic abuse etc. We can all Syndrome Bill. We spent time discussing it. If the government’s vision is delivered, it
work for the wellbeing of many groups “We strongly believe everyone with would mean all young people with learning
that we are not ourselves members of. learning disabilities should be treated disabilities and their families get good,
Lastly, I’d like to point out I live in the equally. This means their rights are person-centred support and education.
Republic of Ireland. I’ll receive no direct protected and they receive good care And adults with learning disabilities of
benefit when the bill is enacted. and support. all ages get the right support and enough
I was invited to join the NDSPG because “We question why this bill is treating money to live good lives in their own
of my skills, interests and passions. Like all people with Down syndrome differently homes in the community. n
the other members, I receive no pay for the from others with learning disabilities. l www.learningdisabilityengland.org.uk

www.cl-initiatives.co.uk Community Living Vol 35 No 3 | Spring 2022 19