Wales Special Educational Needs Bill

What families of disabled children want

"We live at the top of a valley. Most leisure services take place at least 10 miles away. I am a single parent with no car and facilities are not easy to access with public transport. Transport is provided for some services but only for children living locally to the services. I feel my child is not being treated fairly. Access to services should be available to ALL children who need it." Mum from Torfaen

Disabled children and their families want the support that many families take for granted, such as:

• childcare so that parents can work
• short breaks to allow families to have a rest and for a disabled child to enjoy a leisure activity
• therapy services such as speech and language to support the child's development
• the right school so a child can learn and reach their potential.

Families want the right support and services for their child and are prepared to travel to find them, or even be separated from their child. But having to spend so much time travelling to access services places pressure on families, many relationships become difficult and the pleasure of good-quality family time together becomes a luxury.

We recently surveyed 61 parents and carers of disabled children in Wales and we found that:

• 64% of families said that the services they need are not available in their local area
• 67% of these families said that the shortage of local services caused them anxiety and stress
• 39% said they struggle to hold down jobs as a result of the lack of local services
• Only 16% said they could access all the services they need in their local area
• Only 8% of families surveyed reported that the process of accessing services locally was simple

We are also concerned that if young people who speak Welsh have to access services away from their community, they may not be able to do so in their first language. Families should not have to be forced apart to access the support they need. All disabled children, young people and their families should be able to use good inclusive and accessible services as close as possible to where they live.

"We had to move house so it would be our local school. My children would have faced a journey of 45 minutes plus and this was too long. Plus they would have not been included in the local services." Mum from Wales

The Education (Wales) Bill: the opportunity for change

The Welsh Government intends to legislate to reform special educational needs provision in Wales. The reforms are likely to introduce Individual Development Plans in place of Statements of Special Educational Needs and require local authorities to improve local service planning by:

• Creating regional consortia to conduct joint strategic planning and commissioning of services to ensure the provision of an appropriate range of services
• Creating 'Support Panels' of those in control of health, education and social care budgets to agree on provision for young people

However, the Welsh Government are currently re-assessing their proposals following a period of consultation. This is an ideal opportunity for the Welsh Government to listen to the families of the 40,000 disabled children in Wales and ensure they can access good inclusive and accessible local service.

The 'Provide Local Principle': the guarantee families need

To make sure that families can stay and grow together, in their local communities, Scope Cymru is calling on the Welsh Government to include a 'Provide Local Principle' when they introduce the Education (Wales) Bill. The 'Provide Local Principle' would:

• Ensure services in a local area are inclusive and accessible
• Put a duty on local agencies to introduce new inclusive and accessible services if they don't exist in a local area

It will mean that when councils plan and evaluate local services, they will have to make it a priority to provide support close to home. Support for disabled children and their families will have to be part of local services in your community wherever possible.

The 'Provide Local Principle' will ensure that if your area does not provide good enough inclusive and accessible services for local families, then the local authority and health agencies will be required to improve it to a standard that families are happy with.

"My disabled child would have a better quality of life, and enjoy activities like other children his age. My other children wouldn't be as limited in what they can do. The relationship between my son and his sister would be far better as currently they don't get a break from each other and she is limited in what she can do as I don't have suitable childcare to take her to do activities." Mum from Llanelli