John Smithies of the Down’s Syndrome Association
tells us how human rights principles can be used to obtain the services
you’re entitled to.
“My college couldn’t see past my face,” says James, 19. “They thought I was stupid.”
James has Down’s Syndrome and took a three-year course in promoting
independence when he was at college. “The first year was okay,” says
his mother Diana, “but the second year was useless – his work
experience was picking up litter in the car park.” After three years
she made the decision to take him out of college and find part-time
employment for him. “College was little more than a holding pen,” she
says. “There was no attempt to teach him anything and the headteacher
even told us, ‘If you get James a job you’re setting him up for a fall
– there’s no way he’s going to get employment.’”
What happens to
people with learning disabilities when they leave school? The
government puts billions into education for under-18s, but options are
scant once they leave. Sadly, it is no exaggeration that many people
are watching TV at home, looked after by a live-in carer (often one of
their parents). There is no legal right to a service – and many parents
face a fight to obtain any form of one.
The fact is that in order to obtain the services they are entitled
to, parents need to take matters into their own hands and approach
their local authorities and MPs.
‘Human rights’ is a broad term that you may not think applies to you
or those in your care. But when a council refuses to help those in need
they may in fact be in breach of human rights principles.
Making
this sort of information accessible and relevant would mark a giant
leap forward. So this is what the Down’s Syndrome Association is doing,
with this year’s Awareness Week (June 2-8). How can those working with,
supporting or caring for, people with Down’s Syndrome use human rights
language to demand fair treatment? How can people with learning
disabilities lobby their MPs and local authorities to obtain better
services? We at the DSA are producing clear and accessible guides on
how human rights principles can be used to really make a change.
There are several clauses in the 1998 Human Rights Act that have proved useful in practice:
Article 2 – The right to life.
Article 3 – The right not to be tortured or treated in an inhuman or degrading way.
Article 8 – The right to respect for private and family life, home and correspondence.
Article
14 – The right not to be discriminated against in relation to any of
the rights contained in the European Convention on Human Rights.
Here’s a case in which we successfully cited Article 8:
Mrs S has multiple sclerosis and her 13-year-old son, J, has Down’s
Syndrome and oppositional defiant disorder/conduct disorder. He has a
long history of self-harming and violent attacks on his family. The
family had been receiving very limited respite care, but there had been
no attempt to implement a behaviour management programme for J despite
repeated requests. As a result, J had not been out of the family home
for some time and Mrs S was extremely concerned that J was going to
seriously harm himself or a member of the family.
The Down’s
Syndrome Association wrote to the Head of Children’s Services citing
the Human Rights Act, Article 8 (“The right to respect for private and
family life, home and correspondence”). We argued that participation in
public life is a human right. Unreasonable barriers to accessing
essential economic, social, cultural and recreational activities can be
challenged – in this case the lack of support to manage J’s behaviour.
We also argued that this applied to Mrs S too as she was unable to
participate in the life of the community.
Within two weeks J’s respite care was increased, he was referred to
the local behaviour team for assessment and support and his parents
were offered the opportunity to receive training on safe methods of
restraint and behaviour management.
At the very least the mention of human rights can be enough to
motivate local authorities to reconsider their decisions. But the
problem remains that most people do not know they can use human rights
language when communicating with their local authorities or MPs.
Earlier
this year the Equality and Human Rights Commission held a conference on
the UN Convention on the rights of Persons with Disabilities. It seems
our government is being slow to ratify the Convention. Not only that,
but even if they do ratify it, it won’t affect the law in this country
anyway. What it will do, eminent disability discrimination lawyer David
Wolfe assured us, is allow us to scrutinise and challenge – take the
government to task on the issues that affect disabled people. “Use the
Convention expansively and generously rather than restrictively and
defensively,” as he put it.
As a first step, you could sign Scope’s petition urging the
government to ratify the Convention without reservation or limitation
by December 2008: www.scope.org.uk/disabilism/
Many people with learning disabilities are still subjected to human
rights abuses – whether knowingly or not. We need to remember that it
is a right, not a privilege, to be treated with fairness, equality,
dignity and respect. The Human Rights Act is just one way we can
‘scrutinise’ and ‘challenge’ and we should use it.
As for James,
his headteacher showed his confidence in his abilities, magnanimously
promising to keep his college place open for him, “in case anything
goes wrong.”
Down’s Syndrome Awareness Week – June 2-8 2008
To learn more about the Down’s Syndrome Assocation:
Down’s Syndrome Association
Langdon Down Centre
2a Langdon Park
Teddington
TW11 9PS
Tel: 0845 230 0372
Fax: 0845 230 0373
www.downs-syndrome.org.uk
Registered Charity No. 1061474