Agenda item

Please introduce yourself and describe the roles and responsibilities that your position involves.

I am the Service Director of Parents’ Consortium.  Parents’ Consortium is a parent-led charity, set up to support parents of disabled children and young people and to highlight issues facing parents.  My role is strategic and operational, and I manage the resource centre at Allsworth Court.  Parents’ Consortium has 20 permanent staff, mostly full time, and 60 sessional workers.  Last year our turnover was £1.15 million.  I sit on four Local Children’s Services Partnerships (LCSPs), the County Strategic Partnership for Disabled Children and the team which is reviewing the Children’s Trust.

 

The national context for Parents’ Consortium is that Every Child Matters (ECM) did not include disabled children, so we started Every Disabled Child Matters (EDCM).  On 6 July I will attend an event at the House of Lords to launch a document: ‘Disabled Children: an Agenda for the New Government’.

 

My son, who is now 20, has severe learning disabilities and very complex needs, and his life so far has been a 20-year fight.

 

What is the Parents Consortium?  What services does it provide?

It is a parent-led charity formed in 1996, which now has 1,000 family members. The main areas it covers are Dartford, Gravesham and Swanley.  It has a number of operating departments; Leisure Services, Information, and Management and Administration.

 

The Leisure Services department delivers play schemes, after-school and weekend clubs and offers one-to-one family support services and a siblings group. We are currently developing a 6-bed short break unit, which will make a vital contribution to delivering the personalisation agenda in social care.  We get a good level of local support, including from the Youth Service.

 

The Information department provides timely and accessible information to parents and families on local services– eg Early Bird.  We are a well respected and trusted local resource.

 

The Management and Administration department oversees the running of Allsworth Court resource centre.  In 2007, we were commissioned to start a Children and Families Direct Payment Support scheme.  This currently helps 600 families, and 80 more are soon to take up Direct Payments.  We started this with two support workers, serving East and West Kent, but how we have seven.

 

In your experience, what are the main benefits - if any - that Extended Services bring to pupils and to the local community?

Let me go back to the start of Extended Services in 2002, when the benefits for the community were set out.  At that point, we were concerned that disabled children and their families would not be able to share these benefits.  The Government expected that by 2010, all schools, including special schools, would be able to deliver the core offer.  After a Parliamentary review in 2007 of services for disabled children, there was a document issued (shown to the Select Committee) which set out clear objectives and targets. This document had said that ‘services for disabled children are a national scandal’ and that ‘participation in positive activities gives a good outcome for a child’s wellbeing and health, and promotes a good sense of self-worth’.  Parents’ Consortium’s philosophy is that a disabled child’s first need is for an ordinary life.

 

Does your service cover all types of disability?

Yes

 

In your view, what are the main challenges for schools and other providers when offering Extended Services to pupils and to the local community?

Key messages on this come from anecdotal evidence and from research.  Good inclusion is more likely to happen at an after-school club than at an event organised by a leisure centre. Inclusion at the latter is likely to be more sporadic, so we definitely need to improve inclusion.  Special schools are often geographically remote from the nearest community, so there is a challenge about how they could be helped to link into community activities.

 

Attitudes to disability have changed much since the eugenics movement in the early 1900s but still need to change much more. The institutional/segregational attitude to disability has a long history, and elements of it still remain in the ethos of some special schools.  People’s interpretations and understanding of the term ‘inclusive services’ vary greatly. The Centre for Excellence and Outcomes (C4EO) provides evidence of this, and I will supply the Select Committee with details.

 

A survey of 3,600 schools, undertaken in 2009, showed a big gap between the expectations of Extended Services in 2002 and the reality in 2009.

 

What are the main challenges for disabled children in accessing Extended Services, and how can all these challenges be overcome?

We need to look again at the history of attitudes to disability, and recognise the extent to which disablism is ingrained in society.  All disabled people should be able to integrate, and should be able to have an ordinary life. This throws up a comparison between the medical and social models of disability.  There are a number of keys issues to address:-

• Access:  the physical design of buildings is not the only issue, and other needs should be considered.  Conflict between the needs of disabled and able-bodied people can be broken down by Extended Services.
• Transport: Society should not dictate where disabled people can or can’t live their lives.  Children attending special schools tend to have to travel further from home, and so are further away from their friends. Community-based activities would help them to integrate more with friends nearer their homes.

 

Services for disabled children should be one of the KCC’s performance indicators. When setting up core offer services, parents of disabled children should be fully consulted on access to information, transparency, assessment, participation and feedback.

 

When the Riverside Family Centre was being set up in Gravesend, they consulted me on the design of the centre and the facilities for children with complex needs (eg, changing facilities, provision of hoists, and a proper wet room) and good facilities were installed, which take account of changing needs and will serve well into the future. As a result, Riverside is the only place in Kent which fully caters for the requirements of children with complex needs.  So many other places fall short of meeting these needs. Part of the problem is that the Disability Discrimination Act (DDA) sets out minimum standards for provision, but minimum standards simply aren’t good enough.  A child or young person with complex needs requires a proper hoist, as manual handling without one can be painful and dangerous.

 

In 2008, a document (shown to the Select Committee) and DVD set out issues around extended inclusion, which I would recommend that the Select Committee read. 

 

Someone needs to take ownership of the disability issues and embed them in mainstream culture.  It is known that 7% of the child population is likely to come under the DDA.  This might not sound a very high figure, but between 1995 and 2002, the population of disabled children increased by 60%.  This is due to two reasons:- recognition and diagnosis of conditions is now better, and more young people born with very complex needs are living on through childhood.

 

This sounds like a very bleak picture, but the Select Committee has previously heard about the excellent services provided by the Valence School, so there is some good special school provision out there.

Yes, wouldn’t it be wonderful if that provision could be replicated throughout society!

 

In your opinion, which models of provision should be adopted in order to organise and deliver Extended Services in the County?

• They would need to be holistic, and take account of the needs of the whole family. So often family activities have to be structured around the needs of the disabled child, as there is no other option. Simple things can have a big effect.
• They should not be too prescriptive.  Information on available services and provision needs to pull together information on services provided by all sectors, including the private and voluntary sector.  By having a full range of information, families have the chance to take full advantage of what is available.
• Good consultation with children and young people and their families is vital. The KCC should not assume they know what is suitable and desirable. I will send the Select Committee some case studies which were set out in a report of March 2000.
• The Transforming Lives document covers quality inclusion, starting with inclusive design of buildings. Workforce training is also crucial, so staff fully understand the needs of the disabled.  I am disabled not by my need to use a wheelchair but by society’s reaction to my wheelchair.

 

Surely there must be many very helpful people who are willing to offer help to a disabled person?

Yes, and I appreciate the help that people offer, but should I have to rely on accepting the help of strangers? I am limited by the need to ask for help. For instance, if I want to travel by train, I have to ring the station 24 hours in advance to ensure that a ramp will be available to help me get on the train. I shouldn’t have to plan ahead and book special help. 

 

For children and young people with complex needs, there is a challenge around deciding if Extended Services should be provided in a special school setting or out in the community.

 

How might the reduction of Government funding for Extended Services and the possible shrinking of the Extended Services Team affect Extended Services provision in Kent? In your opinion, how can Kent County Council, together with schools and other providers of Extended Services, organise a more efficient delivery of Extended Services and ensure the sustainability of these services into the future?

The challenges are not all about resources; some good Extended Services provision could include disabled children if there were more understanding of their needs and the possibilities available.  The cut in government funding is a reality which must be faced. There are a number of statistics setting out the financial and other challenges facing disabled children and their parents:-

• Parents bringing up a disabled child already face financial challenges, as it is three times more expensive to bring up a disabled child than a non-disabled child. 
• Many disabled young people are not in employment and so are living on benefits; 17% of disabled young people, compared to 7% of non-disabled young people. 
• Parents of disabled children are more likely to separate and become a lone parent; 25% of lone parents are bringing up a disabled child.
• Disabled children are eight times more likely to be excluded from school.
• 80% of disabled children have been bullied, compared to 60–70% of non-disabled children.

This all paints a gloomy picture but it is the reality of the challenge.

 

Where services are being designed for disabled young people, they and their parents must always be consulted at the outset and at all stages – planning, setting up and monitoring.  Local authorities’ disability equality schemes place a duty on service providers to do this, but it is known that many schools don’t.  Many of the Extended Services schemes running now should have been developed in consultation with children and parents, but weren’t. 

 

There is also a change in the emphasis of legislation. The DDA looked at disabled people, whereas the Equality Act will look at people first and foremost and their disabilities second.  Provision of Extended Services will need to take account of the impact of this new legislation when it comes in.

 

Kent is signed up to the EDCM Local Authority and PCT Charters and is developing a multi-agency strategy, which will need to take account of the work of C4EO to improve outcomes by improving access to inclusive activities.

 

This sets out the broad context of Extended Services provision for disabled children and gives examples of good practice. We need collective ownership of the issue to drive forward change.

 

Your point about the need to consult before designing buildings and services for disabled people is very well made.  The Select Committee recently visited the Living Well Centre and the Bridge in Dartford.  Did you have any input into the design of these services?

No, I didn’t have any input into either of these.  The Bridge in particular is a high quality, high specification development, but I would be interested to know what consultation they did with disabled people or organisations.  To be truly inclusive, you have to have asked the questions.  The Bridge is difficult to get to, there is no car parking for disabled people, and if it rains you get wet travelling from the parking to the building that you want!  The Fastrack bus service does not help.

 

So how should a developer go about designing and consulting on new services which take account of the needs of disabled people?

Parents’ Consortium could help to support and guide a developer through the process and tell them the questions they need to ask, so we would be a good organisation to come to. A way of undertaking consultation would be to use ‘Aiming High for Disabled Children’.

 

It seems that we now have to translate the theories into action. You say that you don’t want disabled people to be treated as ‘special’, but to get funding for services you have to have ‘special’ status.

We deserve equality, and a change in attitude costs nothing. 

 

Every KCC directorate has a strategic equalities/diversity group which includes a ‘champion’, so the KCC takes this issue seriously.

 

Parents’ Consortium works in West Kent, but is there a similar service across the rest of Kent?

There are many groups addressing disabilities, at both national and local levels.  Parents’ Consortium is a distinct model, although other organisations try to replicate what we do.

 

At the Neighbourhood Resources Centre in Canterbury, which was set up with a grant from the City Council, we have a changing room for people with complex needs, which is fitted with a hoist.  Also, a local college/special school has a sensory room.  There is also a very good voluntary organisation called SNAAP, which runs at the Wind Chimes children’s centre in Herne Bay.

Yes, these are good examples of good work, and I hope they are not isolated examples.  I know SNAAP and what they do mirrors what Parents’ Consortium does.  Family care is very important, as 60% of young adults with disabilities will return to their families for care after leaving school or college.

 

When planning Extended Services provision, a school must consult the community.  Should the rule be changed to say that disabled people should also be satisfactorily consulted?

Yes, and there is plenty of evidence of occasions when they haven’t been!  Children with Autistic Spectrum Disorder or learning disabilities need to have a pictorial timetable, but most schools do not even consider providing these. Other things which are widely used are Widgit, British Sign Language and Makaton. Awareness of alternative forms of communication is vital.

 

Are most people with a disability ruled by their disability, or do they just cope with it?

It is difficult to say yes or no to this question, and you need to refer back to the social model of disability. I do not call myself ‘disabled’; it is society which disables me.  I have an impairment.  I would rather people use the phrase ‘disabled children’ than ‘children with a disability’.  Although some people are very difficult to engage, you must never make assumptions that you know what they need or want you to provide for them.