“I cry every day because there is no hope and no one cares. If I had just a little help we could live a more normal and fulfilling life.”
This is just one of the heart-wrenching stories we’ve heard from parents of disabled children around the country during the past 18 months of our Keep Us Close campaign, fighting for better local support for them and their families.
It’s an important day for a new set of changes that many parents around the country have been waiting for. Today the Children and Families Bill will be passed in Parliament, becoming an Act (that means it’s now decided – well, almost all of it – see below).
The Government promised this would be a once-in-a-generation change to how support is provided to children and their families “stopping the ‘agonising’ battle many parents fight to get the support for their families, as they are forced to go from ‘pillar to post’ between different authorities and agencies.”
The Bill hasn’t gone as far as Scope and many parents, groups and other organisations would like, but there are some important changes that are good. And now the focus is on what needs to happen next.
What is not so good?
There is uncertainty about how much of a difference the reforms will make.
The original intentions behind these changes were definitely aspirational and felt like families’ experiences had been listened to. The Children and Families Bill hasn’t lived up to all the promises set out by Government, leading to some parents and experts asking what will actually be different?
Scope’s Keep Us Close campaign asked the Government to to ensure that local authorities promoted inclusive and accessible universal services that all families can use. This was an ideal opportunity to bring in transformational change that would mean that more families with disabled children would have access to the support and advice that they need in their local community. This hasn’t happened and feels like a missed opportunity.
Families should know what local support is available – and have a say in it.
One of the big changes the Children and Families Bill will bring in is a new “Local Offer”. Your local council will have to publish details of all the relevant services that are available if you have a disabled child or young person, or if they have a special educational need. This is meant to help end the struggles parents face to know what support they can even access.
But just providing a fairly empty “yellow pages” won’t help. Parents know what support they and their children need. One of the good changes the Government has promised is that families will have more of a say in what services are provided. This is meant to address an issue many parents complain of – not being listened to – and it’s one of the biggest issues Scope has been campaigning for.
All disabled children should be included when councils plan services.
When councils consider what support to provide in their local area as their Local Offer, they should also plan for disabled children as well. At one stage it was only children with Special Educational Needs – if your child was fine at school but had other needs, they were effectively left out of the new system.
Disabled children from birth should benefit from more joined up support.
Early years settings, such as children’s centres, and professionals like health visitors will now need to be better at identifying disabled children who need additional help right from birth and put in place the support they and their families need. And young people, right up until they are 25 could benefit from a more joined up approach to their learning and preparing for adulthood, removing the cliff edge where support falls away at age 16 to 18 at present.
The Bill is being passed today, but it’s just one step along the journey to change support to meet children’s and families’ needs.
Right now the Government is making the final changes to the ‘Code of Practice’ – the important practical details about exactly what will happen and when. This will be the guidance that local councils, early years settings, schools, colleges and health agencies will use to understand what they need to do next so that the reforms make a difference for disabled children, young people and their families.
How will families have a say in improving local services? How will local services work together better in practice as promised? How quickly will the changes happen? It’s vital to get the answers right to these and more issues.
Local authorities will play a massively important role in putting the Bill into practice. How will they make the new ‘Local Offer’ work in practice? How can they change the culture that’s leading to lots of disabled children being excluded because of negative attitudes? How else can they make sure local services are inclusive? The commitment to include families in planning and evaluating local provision is absolutely crucial to the success of the Local Offer and local authorities must really get this right.
Charities like Scope
We all need to play a part in getting support right for disabled children and their families. So much needs to improve and we’ll do all we can to help by continuing to work closely with local councils and the Government. Please check back on our blog in the coming weeks – when we know the important details of what happens next we’ll be talking about what the changes mean for parents. And if you want to at any time, please get in touch for support to families with disabled children.