Roadmap for the next Government

There is a desperate lack of services, empathy, and support for the 1.5 million Disabled children and their families in the UK. 

The next government, who we will be voting for on Thursday 4 July, has a real opportunity to make a difference for Disabled children and their families. 

We are calling on the next government to:

Reduce waiting times for children’s mental health and NHS community services, diagnosis and help at school and college.

Revive Disabled children’s social care funding and law as well as the specialist workforce.

Roll out a much-needed increased package of financial support to tackle extra disability, care and energy costs.

Reduce - roadmap for government 2024
Revive - roadmap for government 2024
Roll out - roadmap for government 2024

The onus should not always be on parents to battle for these services, we have enough on our plates on a daily basis. I want to see the next Government removing barriers to social care and making the process more needs based

– Adele, parent carer

These are big asks, but disabled children deserve a government that is prepared to think big and to build a society where everyone is given equal opportunities.

So, what would be a good start for the next Government towards making meaningful change for disabled children and their families?

We’ve identified 10 SUCCESSFUL steps that would have an immediate impact:

The letter "S"

Scrap the planned PIP reforms and the earnings limit on Carer’s Allowance.

  • Disabled people and their carers are currently being penalised from all angles.
  • Regarding the proposed changes to PIP, Contact fundamentally disagrees that it is an ‘open question’ whether people with learning disabilities should be receiving cash benefits and that a voucher system alongside the hopeful sounding ‘access to treatments’ is an appropriate support. This proposal needs to be withdrawn immediately
  • Instead, the new government should reform carer’s allowance and review the sufficiency of disability benefits which are designed to cover the additional costs related to  disability and care   but currently fall short, leaving Disabled children and their families paying the extra expense.
The letter "U"

Unlock Child Trust Funds for Disabled Young People giving them back £210 million in savings. 

The letter "C"

Cap energy costs for families running lifesaving equipment at home.

  • Contact’s Out of Energy research found 40% of families have been forced to cut back on life saving medical equipment and 45% say they have not been able to keep their home warm enough for their child’s needs.
  • An energy social tariff must be introduced for household running essential medical and disability equipment.
The letter "C"

Close the school transport loophole for disabled young people aged 16+.

  • The law says a young person is expected to be in school or training until 18, but there is no right to school transport to enable them to get there once they turn 16.
  • This is grossly unfair as disabled young people often travel further to school or college and are less likely travel independently. Their parents are forced to give up work or face expensive transport costs just to get them to placements.
  • We are calling on the government to close the loophole in the law for 16-18 year olds, so that there is a clear requirement for local authorities to provide eligible disabled young people the right support to get to their place of education.
The letter "E"

Establish a stronger system of accountability for special educational needs law, so Disabled children can have equality of opportunity in Education and put SEN support on legal footing – with a long-term funding.

  • Many disabled children and young people are not receiving the educational provision they need because current law is not complied with.
  • This brings no negative consequences for local decision-makers, only for children and young people.
  • Resolving this crisis in lies in making sure that schools and local authorities comply with the law and fulfil their duties to Disabled children and young people.
  • In England, the Children and Families Act 2014 must be strengthened by putting SEN Support on a statutory footing and be properly funded . The law must also make Health and Social Care jointly responsible for SEND provision alongside education.
  • Whilst the law is different in Wales, Scotland and Northern Ireland there is also a need for better funding and accountability in the system.
  • We are also calling for the new government to end the Safety Valve Agreements that prioritise cost cutting over disabled children and young people’s rights to Special Educational provision.
The letter "S"

Significant investment in the specialist workforce and reduction in waiting lists for diagnosis, children’s mental health and NHS community services.

  • Disabled children and their families are waiting too long to be seen.
  • The longest waiting lists are in community paediatrics, speech and language therapy and occupational therapy. Additionally, there are unacceptable waits for autism assessments for children in most areas (some up to 4 years).
  • The long-term future of the specialist workforce must be secured through proper workforce planning so that children and young people now, and in the future, can access the support they need to thrive. 
  • To solve this, the government should ensure targeted, sustained and ring-fenced funding to eliminate waits and build sufficient capacity in community health and mental health services for disabled children.
  • This should be paired with a recruitment drive for properly trained and qualified clinical psychologists, paediatricians, and therapists.
The letter "S"

Set up a commission to improve access to suitable housing for disabled children and young people.

  • There is a huge shortage of affordable and accessible housing for families with disabled children and young people. Families are also waiting too long for housing adaptions needed to help manage their child’s condition and keep them safe. 
  • A cross-party taskforce, with Disabled people and carers as equal partners could look into:
    • Giving greater priority to families with disabled children who needing social housing
    • Reduce waiting times for specialist home adaptions and increase the grants available
    • How housing and social care departments can work better together
    • Higher accessibility standards when building new homes including how housing design work for autistic people.
    • Availability of suitable housing for Disabled young people and young adults
The letter "F"

Fix Universal Credit for disabled children and young people.

Utilise the skills, knowledge and expertise of parent carers.

  • Parent carers need to be recognised as the experts that they are.
  • Fund better childcare so they can seek employment, and continue in their careers.
  • Give them a meaningful voice in decision making at all levels.
  • Recognise and reward care by increasing the level of Carer’s Allowance, so that it better reflects the level of financial penalty that carers face.
The letter "L"

Launch a parent-led review of short breaks provision and reform Disabled children’s social care law.

  • Families are telling us that the current short breaks (respite) system isn’t working. It’s too rigid to meet needs and too variable from one local area to the next.
  • Many families are finding it difficult to source suitable support workers/PA’s and are having funding being clawed back as a result. There must be more flexibility in how the funding can be used and transparency in how it is granted.
  • The next government should increase its investment in the short breaks innovation fund and prioritise health and social care support for disabled children in their spending plans.
  • We also want to see a commitment to taking forward the Law Commission review, and ensure that implementation of the social care reform recognises and prioritises the circumstances of disabled children and their families.

What you can do

Please help us make these asks a reality for families by sharing our Roadmap for Government with your local prospective parliamentary candidates (PPC) – whether that’s via social media or in conversations.

We’ll also be updating this page to let you know how to email your candidates as soon as we have this information. Please bookmark this page and come back soon.

Campaigning rules

There are certain rules for charities to follow when a General Election is called, however this doesn’t mean we can’t campaign, influence policy and give parents a platform to have their voices heard at such an important time. More information and guidance on campaigning during an election can be found on the NCVO website .