The Children and Families Bill

What families of disabled children want

"Because we are not able to access certain services, we are very isolated. To access certain services would cost a great deal, we do the best we can but £80 return to get my son to the school youth club via taxi is too much. Because I don't drive and am on income support, we live a rather lonely existence." Mum from the South East

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 for their child and are prepared to travel to find them, or even be separated from their child. But the message we have heard from parents is that travelling to services outside of their local area puts enormous pressures on their family life - and that having the right services closer to home would greatly improve their quality of life. 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.

"I can't have a job as I would have to work term time and school hours and have an employer who was flexible about the many hospital and other appointments we have to attend." Mum from the North West

Not having the right support locally has a big impact on families and their quality of life. In a Scope survey, eight in ten families who could not get the right local support said they feel anxious and stressed and just over half said they miss out on doing family activities together such as days out or celebrating birthdays. Families were often forced to make difficult choices, in some instances sending their child away from home so that they could receive all the support they needed.

"My child has to attend a residential special school as there are no schools in the local authority or even neighbouring authorities that are suitable. His school is excellent and offers all the therapy he needs, but he misses out on spending time with extended family, which he previously saw several times a week. He misses out on events such as family birthdays and gatherings." Mum from London

The Children and Families Bill: a good start

The Government is discussing a new Children and Families Bill in Parliament. The Bill is meant to get rid of some of the problems parents of disabled children and young people face in trying to find the services that they need. The Bill could be a good step forward, partly because it will:

• require local authorities to publish a 'Local Offer' of services they expect to be available in the local area
• and it will put a new duty on local agencies like education and the health services to work together better to plan and commission services for disabled children

As these changes will affect just under half a million families in England, they have to be the right changes. However, from talking to families with disabled children we do not think this will be enough to ensure that there are good inclusive and accessible local services. It will not remove the need to travel to get the support they need, or in some instances to make the difficult decision to be away from their child.

The 'Provide Local Principle': the guarantee families need

To make sure that families can stay and grow together in their local communities, Scope is calling on the Government to include a 'Provide Local Principle' in the Children and Families 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 also ensure that if the ‘Local Offer’ in 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.

"It would be mind-blowing. It would mean togetherness and building relationships. It would just be heaven-sent, that once in our life, we could do things normally. But it's a dream isn't it, it can never happen."  Mum from London