Transcript her presentation

Presentation title
Community
to go here
Inclusion – where
are we now, for
children, young
people and families?
Christine Lenehan
Director
Council for Disabled Children
Our history
• Up to 1970’s: institutional services based in
large hospitals
• 1970’s-1980’s: the beginning of the move to
community services
• 1990’s:
family based services at their
height, but realisation of a need to
embed
• 2007:
Aiming High for Disabled Children
• 2010:
Economic crisis and uncertainty
Our population
A changing picture - Children
• A quest for citizenship
• Rise in ASD
• Rise in children with complex needs
• The impact of Inclusion
The changing population
Since 1975…
• Children 0-16 have formed the fastest
growing group of disabled people in the UK
(from 476,000 in 1975 to 772,000 in 2002)
• This represents an increase of 62%
[Improving Life Chances Report, 2005]
A Changing Picture –
Parents
• Increasing expectation on parents in relation
to care and therapy needs
• Increasing expectation on services
• A stronger voice for parents
But still…
Disabled children and their families:
• Face discrimination
• Services are under funded and patchy
• Full citizenship yet to be achieved
• We still have some “respite”
And significant groups still
miss out
• Children with complex health needs/palliative
care/ lifting and handling needs
• Children with severe ASD and children with
challenging behaviour which is impairment
based
• Young people who are 14+
• Siblings
A denial of citizenship
Disabled children are more likely to be bullied and the
target of discrimination than non-disabled children. They
are twice as likely not to be in employment, education or
training. Despite being disproportionate users of health,
education and social care services, they consistently report
poor access to, or unsatisfactory experiences of, these
services. They are less likely to be involved in positive
activities than their non-disabled peers and experience
barriers to being involved in their communities and society
in the way that they want to.
What young people say
• ‘My friends always hang around after school and I never
get to hang around with them ‘cos I live [elsewhere]. I
had to live there ‘cos there was no accessible housing
[near school]’
• ‘Make my local cinema here in Skegness put in a lift. My
mates go every weekend but I can’t. I’m 16 and this is
the one thing that I could easily do with them. I can’t do
sport with them as I’m in a wheelchair. When I wrote to
the cinema 3 years ago to complain, they just sent me
free tickets, which was stupid because I can’t use the
cinema. It has about 30 steps. They refurbished it all 3
years ago but didn’t do anything about them.’
Young peoples voices
•
‘I went to a restaurant once and my friends were
upstairs having a disco. We thought there was a lift, but
they lied to us and there wasn’t a lift. So I had to spend
the whole night down one level while they were upstairs
having a disco. And obviously I couldn’t talk to them I
couldn’t dance with them. It’s just like ‘Oh, there’s
another place I can’t go to because there’s no lift.’
• ‘The bus, the driver doesn’t tell me when I need to get
off. Travelling on the bus is both fun but also confusing
for me. On the bus, I didn’t always feel safe. I wish I
had someone with me like a travel buddy. Travel
buddies are good at helping you with things that are
difficult. A travel buddy would make me feel a lot safer.’
A denial of family life
More likely to live in poverty
Taking into account the fact that it costs 3 times as
much to raise a disabled child, 93% of families with
disabled children face financial difficulty, and one sixth
of families have reported going without essentials such
as food and heating.
“Callum has the needs of a new born baby, he is
doubly incontinent and often sick so the washing
machine and dryer are always on. Callum’s lack of
mobility means he doesn’t generate his own heat,
so the house has to be very warm to make him
comfortable. This means our gas and electricity
bills are unavoidably sky high.” (Parent)
Families experiences
More likely to have parents who break up
53% of parents have reported that having a disabled child has
caused either ‘some’ or ‘major’ relationship difficulties, or the
breakdown of their relationship. Over one quarter of lone
parents have a disabled child, reflecting the pressures of
caring without appropriate levels of support.
“I am constantly tired and run down. Relationships
suffer because both parties require huge amounts of
support, often in quite conflicting ways and times.
There is little time, energy or emotion left for each
other.” (Parent)
Families cont…
• When we talk to siblings, parents and
professionals, the picture that emerges is that
many siblings are struggling to cope with the
emotional and practical demands that being a
sibling entails. Even though they have these
needs that require attention at different stages
of their lives, young siblings are often
marginalized by their families, society and
service providers.
Families cont…
• Most young siblings experience lack of
parental attention, isolation, ignorance about
disability, difficulty coping with their
experiences, and the financial impact of
disability on the family. Many studies on
siblings of children with a chronic illness
indicate that siblings are at risk for negative
psychological effect (SIBS)
What do families want ….
Parents said their biggest priorities for
making them stronger are:
• They want more opportunities to enjoy play
and leisure and want a real choice in the
activities they can take part in.
• They want to see their child reach their full
potential.
• They want a support package to meet their
child’s needs and flexible and regular short
breaks.
What do disabled young
people want?
• ‘As disabled young people we only want the same things as
any other young person, such as friends, relationships,
money, a place of our own and the freedom to do the things
we enjoy. In short, we want choice, control and independence
over our lives. A good transition process is a necessary vehicle
towards greater social inclusion and equality for disabled
young people.’
• Our communities around us should realise we are part of that
community too, there has to be more positive roles for people
with learning disabilities in our community.’
• Treat all disabled people as full members of society and put
structures in place to enable them to take their place
alongside, not tagging on, the rest of the population.’
What does this
mean for what we
understand by
Inclusion ?
Inclusion is…
• A journey with clear direction and purpose:
equality of opportunity for all children and
young people
• Built on six key principles
• A welcome for all disabled children, secure
relationships and support for families when
they need it
• Respect for difference and a commitment to
building friendships and community to the
benefit of everyone
Inclusion is…
• Equality of access to play, learning, leisure
and all aspects of life
• The active participation of children and their
families in decision making
• A proactive approach to identifying and
removing barriers
• Timely access to information and to people
with empowering attitudes, supportive skills
and expertise