Join us in the fight ahead to defend the rights of disabled children

Join us in the fight ahead to defend the rights of disabled children

Our hearts may be as heavy today as they were on Friday morning. But there is no more time to waste grieving. The rights of our disabled children, young people, and us, their families must be defended as we go forward into this new parliament.

Are you with us?

The manifesto that was the least impressive when it came to education and, in particular, to SEND, is the one that we are stuck with for the next five years. But our children do not have five years for this new, but same old, government to act. The pause that was the election campaigning period is over and it is time for all of us to become activists.

Many people on our Facebook group described their feelings as "devastated" and "heartbroken". They wrote about tears, sorrow, and disbelief that a nation could ignore the near destruction of the vulnerable that we have seen in our country over the last decade. But most of all, their words were of fear for the future.

"I am devastated, not only for my own children with SEND, but anyone vulnerable that will continue to be let down by this government. The worst feeling is that the majority of people didn’t care enough about the state of education and our NHS to try something different, we really are completely alone and will continue to not be heard. A very sobering thought!

Comment on our Facebook group

How did we get here?

While the rich got us into this mess through their greed, it was ordinary working families that paid for their sins through vicious austerity policies. It was the weakest and most vulnerable, the disabled, and the children, who suffered the most. 

The fragmented implementation of the SEND reforms have left so many children without the support they have a legal right to. The carelessness of the DWP and its universal credit and PIP assessment systems, have torn away security and mobility from hundreds of thousands of people who relied on their legally-entitled to benefits to live. To show for it, we have a huge rise in the need for food banks, homelessness, and the number of children facing poverty this Christmas is horrifying. If you can help people in need, please do so. 

But at the ballot box, none of these facts mattered. There was only one issue and it wasn’t education. It’s not even a priority. The random acts of careless cruelty of those carrying out policies made only to benefit the already well off, made the election result seem almost, in some areas, like turkeys voting for Christmas.

But this is where we are.

Where next?

So, where do we go from here? For myself, Jack Monroe spoke the clearest, saying we should grieve for a short while and then strive to act to help those in need.

But there are early signs of hope, like the unfurling of green shoots that took a battering in a hurricane. There are the early stages of a coming together of a wide range of disability groups and activists under the banner Our Inclusive Future. Stand by for more on this.

And of course for grass-roots SEND family campaigning everywhere there is the SEND Community Alliance

We need now to fight to defend our children's rights. We need to ensure the law as it stands is upheld and children's rights are respected. We need to push for reforms where they are needed. We will not beg for what is ours and our children's by right and in law.

I am making a public request today for us to be included on the senior SEND Leadership boards, specifically, the one tasked with overseeing the SEND Review. We deserve a seat at the table with the charities and the government-funded bodies. They need to hear our voice. Our work over these years has shown we are a force for good and a voice that represents hundreds of thousands of parents. We are truly independent.

The Prime minister has said they are the servants of the people. We must and we will hold him to that.

Restating our SEND manifesto for 2020+


Here is an abbreviated version of what we want. You can read a full version of our manifesto here

The UK election result underlines the importance of the work ahead for SEND Community Alliance. Looking at the party manifestos, we are disappointed that the weakest for SEND has won. 

The right to an equal education for disabled children and young people is about human rights and equality. 

We will be calling on the new education secretary to enact the recommendations of the SEND inquiry, and to include our voice at the highest level of discussions on how to do that. 

Please support us.

SEND Community Allliance

1. Make accountability in SEND a reality

  • Accountability is key This means not only financial accountability but taking responsibility for the quality of services provided. For the aims, spirit and legislation of the Children and Families Act to become embedded in practice across England, everyone working with disabled children and families must take responsibility for making it happen.
  • They must promote co-ordinated, equal partnerships, with legally-binding responsibilities and a duty to share costs. This includes enabling true co-production with families. They must remember at all times why they are there: to help disabled children thrive, not to protect their own budgets.
  • Ensure local authorities and schools follow the law and meet their legal duties to children with SEND. There must be robust enforcement and clear consequences for failure to do so, including disciplinary proceedings where individuals are found to be at fault.
  • The SEND system requires a dedicated regulatory body, independent of Government and local authorities and including representation from families, to ensure the rights of children and young people with SEND become a meaningful reality, and are not dependent on the knowledge, resources and capacity of individuals to enforce them. This regulatory body must have the capacity, authority and powers to assess, investigate and impose sanctions of a robust and deterrent nature. 

2. Ensure fair and adequate long-term funding for SEND

  • Ensure long-term, sustainable and sufficient day-to-day funding that is adequate to fully implement the Children and Families Act.
  • A firm commitment to targeted and sustained investment in SEND. This investment should be directed at frontline services and early intervention to avoid escalating costs in crisis management.
  • Funding must be tracked and scrutinised to ensure it is used for the purpose for which it is intended and is directed effectively to produce positive, measurable outcomes for children and young people with SEND and their families.
  • The Government must clarify its intentions regarding alternative sources of funding for high needs before closing off the possibility of local authorities transferring funds from other budgets.
  • Given the particularly poor outcomes for pupils on SEND Support there must be closer monitoring of the progress of this cohort. We call for an urgent review of the effectiveness and transparency of the notional SEND budget and the impact of this arrangement on inclusive schools. This budget must also be ring-fenced.

3. Pledge a commitment to inclusion and the rights of the child

  • True inclusion must mean that every disabled child’s family has the right to choose be in a mainstream school if that is their wish. So schools must be accessible, resourced and staffed to offer appropriate support and an equal education. Inclusion means having the same opportunities to thrive now and in the future as part of society.
  • Disproportionate and discriminatory school exclusion of children with SEND is discriminatory must be stopped. We want an end to zero-tolerance policies and to internal and external exclusions for children with SEND. Children faced with exclusion should be assessed for undiagnosed SEND
  • Where children are unable to attend school for whatever reason, appropriate provision must be secured as a matter of urgency.
  • Ensure a rights-based system and equalities legislation underpins the SEND system

4. Commit to creating consistent support

  • SEND children should be taught by the most experienced staff, not the least trained or temporary staff.
  • There must be a minimum level of SEND and legal training for all local authority staff that work with our children.
  • All SENCOs must be qualified with the NASENCO award or similar BEFORE they take up the role, rather than it being unsupervised on-the-job training.
  • Every school leader must be a leader of SEND with an interest in and knowledge of SEND principles and law.
  • We want a coherent national SEND system, underpinned by human rights and disability laws. There is no space for local policies that conflict with legal responsibilities.

Initial steps towards this would include: 

  • development of a national EHCP template;
  • making health and care elements of EHCPs legally binding;
  • development of a national SEND transport policy that extends from 0-25;
  • an end to non-statutory ‘my plans’ and locally variable ‘banding’,
  • national oversight of therapy and early intervention services in each area,
  • access to free, completely independent legal advice for families,
  • regulation of the Local Offer;
  • minimum levels of support services commensurate with the local profile of needs

5. Action on Post-16 support

  • Improve the access to education, opportunities and training for young disabled people aged 16-25.
  • End the abrupt cessation of EHCPs without social care or other arrangements in place. Promotion of independence must be planned and appropriate, and should not be imposed purely to reduce expenditure.
  • Realising the ambitions of the reforms requires well-funded integrated commissioning and significant investment in community-based provision, including supported employment and living arrangements.

6. Commit to giving families a voice

  • Recommit to truly placing disabled children and their families at the heart of the system.
  • It’s vital we are involved as equal partners in all decisions that affect us. We want representation on national SEND decision-making bodies from independent grass-roots groups like ours, that are not funded by central or local government. And that MUST include empowering young, disabled people to have their voices heard at a national level as an ongoing and meaningful part of the central conversation in more than simply tokenistic ways.

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    Tania Tirraoro

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