Government SEND Reforms: A call to action
The Government has published a set of proposed reforms to the Special Educational Needs and Disabilities (SEND) system, which it aims to implement by 2030. Under these proposals, every child with additional needs would have an Individual Support Plan (ISP), alongside access to specialist support and dedicated spaces for targeted provision within mainstream schools.
However, these changes are expected to significantly reduce the number of Education, Health and Care Plans (EHCPs). EHCPs would be reserved only for children with the most complex needs, making them more difficult to obtain.
Many children and young adults with Duchenne muscular dystrophy (DMD) have EHCPs and the support and education provision they access could be affected by these changes from 2030 onwards.
The government is now consulting on these proposed changes. The consultation runs until Monday 18 May.
How can you respond?
We are encouraging members of our community and anyone else with an interest in these issues to take a few minutes to complete a short response to the government consultation available here.
We suggest responding to the easy read version of the consultation, which is shorter and easier to complete, particularly for pupils, students, parents and caregivers.
Below, we have listed the key questions from this consultation and set out some suggestions on what you might like include in your response, based on your own views and experience. You are welcome to respond in bullet points and should try to personalise your answers and include examples as much as possible.
The key messages we are hoping to emphasise are:
– the complexity of Duchenne and the resulting need for ongoing, additional support; and
– that every person with Duchenne should automatically be eligible for an EHCP following diagnosis.
The more people from our community who respond, the greater impact we can have. Please complete as many questions as you can in the consultation document by 18 May 2026.
You can also reply by post to: SENDAP Reform, Sanctuary Buildings, Great Smith Street, London, SW1P 3BT or by emailing [email protected].
Key issues to raise in your response
Where possible, throughout your responses use your own experience to explain and highlight the following key issues with the proposed reforms and how they relate to young people with Duchenne muscular dystrophy (DMD).
– EHC Plan ensures young people with DMD get fully assessed for all their SEND.
– You can not fit DMD into a standardised box. It must be individualised assessment.
– We currently must right to appeal assessments and provision.
– An ISP or school plan will not be enough.
– The EHCP process needs to be easier but keep young people at the centre.
– Provision for extra TA 1:1 support which many young people with DMD rely on is not available.
– Young people with DMD are under the care of a multidisciplinary team (MDT). Collaboration with Neuromuscular experts, social services, speech therapy, educational psychologists, wellbeing, physiotherapy and OT services are crucial for assessment and interventions.
– School staff training is essential.
– Families affected by DMD need a choice of local mainstream schools that meet our children’s needs.
Consultation questions and key points to make
Below, we have suggested some key points you might want to include in your responses to the consultation questions.
- How can we involve children and families in making decisions about SEND support?
Suggested key points:
– Tell them that schools and Local Authorities must listen to children and families and that plans must be made with them.
- How can we make sure that all children with SEND get the support they need?
Suggested key points:
– Make it clear that schools and local authorities need to listen to young people and families because we are the experts on living with Duchenne muscular dystrophy (DMD) and what is required to ensure people with DMD have the right support and can thrive in education settings.
- Mental health affects your mind. Things like your thoughts, feelings and how you cope in everyday life. Your mind controls how you think and feel. How can we support children with their mental health at nursery, school and college?
Suggested key points:
– Schools need to be aware that young people with Duchenne Muscular Dystrophy are at high risk of mental health difficulties and need appropriate support.
– You could list the things your child needs help with to support their well-being – for example, making friends, managing anxiety, being safe etc.
- What help do you think children and families need before they start school?
Suggested key points:
– When children with Duchenne muscular dystrophy are diagnosed, they should automatically be given an EHC Plan due to the severity and complex nature of the condition.
– You could list the different needs your child/young person has including their physical needs.
– You could also share how difficult and hard it has been to get an EHCP or even an EHCP Assessment if this is the case.
- We want nursery, school and college staff to have training about how to support children with SEND. What are the most important things they need to know to support children and young people well?
Suggested key points:
– Tell them that Duchenne muscular dystrophy is a rare and complex condition. Staff and professionals need specific training.
– You could add in the things that affect your child/young person that they need to know at their school/college. For example, some children with DMD have neurodevelopmental conditions which may require additional support, others may have learning difficulties, dyslexia or mental health issues. These are all areas that staff need training in as well as on how to support physical needs.
- An Individual Support Plan is about what support a child needs day to day in school. And what their school will do to help. How can we make sure that Individual Support Plans work well, and families are happy with them?
Suggested key points:
– The Local Authority needs to be accountable for the assessment of SEND and provision in ISPs otherwise families will not be able to hold anyone to account or appeal.
– Where relevant, tell them if you have experience of appealing a decision under the current system, how long it took and how stressful it was.
- How can we help young people with SEND to leave school and start college, work or university?
Suggested key points:
– Think about the various routes to employment all young people can take (e.g. university, apprenticeships, internships, opportunities for paid employment etc. Young people with Duchenne muscular dystrophy need support to access all these too.
- An Inclusion Base is part of a school where children with SEND can get more support. How can we make sure that Inclusion Bases help children in mainstream schools?
Suggested key points:
– Inclusion bases can support young people with Duchenne muscular dystrophy, but they must not replace the opportunities for young people to access mainstream classes.
– There needs to be a high level of 1:1 support
- Children with complex needs need a lot of support in different parts of their lives. Things like support with their health, moving around and telling people what they want and need. How can we make sure that children with complex needs get the right support?
Suggested key points:
– Tell them that Duchenne muscular dystrophy is a severe and complex condition.
– List the different types of support your young person needs during the day.
- How can we help children and families to choose which school is best for their child?
Suggested key points:
– Give families the opportunities to visit all schools and take their preferences seriously.
– Children and families should not be limited to one school because of access. It is important to take into account the various Special Educational Needs that can be present in DMD.
- What information and help do children and families need about SEND support?
Suggested key points:
– Children with Duchenne muscular dystrophy need to have an Education Health and Care plan as soon as they are diagnosed so families don’t have to fight for it as happens currently.
– Provide details of your own relevant experiences of navigating the current system.
- Is there anything else you would like to tell us about SEND support?
Suggested key points:
Young people with Duchenne Muscular Dystrophy require an automatic EHC Plan upon diagnosis.