SMA UK has joined more than 50 charities in the Disabled Children’s Partnership in writing to the Prime Minister, calling for urgent action to fix the social care system for disabled children and their families. 

The letter highlights the serious and ongoing failures within disabled children’s social care and urges the Government to act on proposals from the Law Commission to create a simpler and fairer system. 

Read the letter here. 

For families affected by spinal muscular atrophy (SMA), access to appropriate social care can be essential to ensuring children and young people can live safely, participate in family and community life, and have the same opportunities as their peers. 

Yet too many families face complex systems, inconsistent support and long waits for help, often having to reach crisis point before their needs are properly recognised. 

A ready-made solution 

The Law Commission has carried out extensive work on proposals to reform disabled children’s social care and create a system that is simpler, clearer and fairer for families. 

SMA UK is supporting calls for the Government to adopt these proposals in full and make meaningful reform a priority. 

Giles Lomax, CEO of SMA UK, said: 

“Families affected by SMA should not have to fight for the support their children need. Social care should be there to help families thrive, not only step in when they have reached breaking point. 

“We regularly hear from families about the challenges they face navigating complex systems and securing the right support. This can place enormous pressure on parents and carers at a time when they should be able to focus on their children. 

“There is a clear opportunity to create a simpler and fairer system for disabled children and their families. We urge the Government to listen to families, act on the Law Commission’s proposals and make meaningful reform of disabled children’s social care a priority.” 

The impact on families 

When the right social care support is not available, the consequences for disabled children and their families can be profound. 

Parents and carers can find themselves taking on significant levels of care without adequate support, while children and young people can miss out on opportunities to develop their independence, access their communities and enjoy family life. 

For children and young people living with SMA, whose care needs can be significant and can change over time, reliable and appropriate support is particularly important. 

A fair social care system should recognise the needs of disabled children early and provide families with the support they need before they reach crisis point. 

SMA UK is calling for change 

SMA UK will continue to work alongside families, the Disabled Children’s Partnership and other organisations to raise awareness of the challenges facing disabled children and their families. 

We support calls for the Government to take this opportunity to reform disabled children’s social care and deliver a system that is simpler, fairer and responsive to families’ needs. 

Disabled children and their families deserve a social care system that works for them, not one they have to fight to navigate. 

Take Action 

Add your name to back the call for action and stand with disabled children, families and the organisations calling on the Government to act.   

Add yours here.