– where are we now, for children, young people and families?
Christine Lenehan
Director
Council for Disabled Children

• 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:
• 2010:
Aiming High for Disabled Children
Economic crisis and uncertainty

• A quest for citizenship
• Rise in ASD
• Rise in children with complex needs
• The impact of Inclusion

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]

• Increasing expectation on parents in relation to care and therapy needs
• Increasing expectation on services
• A stronger voice for parents

Disabled children and their families:
• Face discrimination
• Services are under funded and patchy
• Full citizenship yet to be achieved
• We still have some “respite”

• 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

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 .

• ‘ 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.’

•
‘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.’

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)

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)

• 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.

• 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)

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.

• ‘
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.’

• 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

• 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