Complete the SEND Consultation Document by 18th May click the link

You may be aware that the Government has published a set of reforms about Special Educational Needs that it wants to implement by 2030. These include radically reducing the number of Education Health and Care Plans, and making it much more difficult to get one. We really need everyone in the community to complete a short response to the Government’s Proposals. Please complete as many Questions as you can in this consultation document before May 18 2026.

We have pasted all 12 questions below (Questions 13 to 16 is your personal information) and put some ideas of what to write under each one. Please make it personal to you if you can. Just write in bullet points, they won’t be interested in long sentences.

1. 1. How can we involve children and families in making decisions about SEND support?

Tell them that schools and Local Authorities must listen to children and families and that plans must be made with them.

2. How can we make sure that all children with SEND get the support they need?

All children with Duchenne Muscular Dystrophy should be given an Education Health and Care Plan automatically at diagnosis. Make it clear that schools and local authorities need to listen to young people and families because we are the experts of living with Duchenne Muscular Dystrophy. 

3. Mental health affects your mind. Things like your thoughts, feelings and how you cope in every day life. Your mind controls how you think and feel. How can we support children with their mental health at nursery, school and college?

Schools need to be aware that young people with Duchenne Muscular Dystrophy are at high risk of mental health difficulties and need appropriate support. List the things your child needs help with to support his well-being – for example , making friends, anxiety, being safe etc. 

4. What help do you think children and families need before they start school?

When children with Duchenne Muscular Dystrophy are diagnosed they should automatically be given an EHC Plan – list the different needs your child/young person has including his physical needs. Also – share how difficult and hard it has been to get an EHCP/ Assessment if this is the case. 

5. 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?

Tell them that Duchenne Muscular Dystrophy is a rare and complex condition. Staff and professionals need specific training – add in the things that affect your child/young person that they need to know at his school/college. Eg. Some children with DMD need autism support, others may have dyslexia or mental health issues. These are all areas that staff need training in as well as how to support physical needs. 

6. 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?

The Local Authority needs to be accountable for the assessment of SEND and provision in ISPs otherwise families will not be able to appeal. Tell them if you have had to appeal and how long it took and how stressful it was. 

7. How can we help young people with SEND to leave school and start college, work or university?

Think about the various route to employment all young people can take (eg university, apprenticeships, internships, opportunities for paid employment etc. Young people with Duchenne Muscular Dystrophy need support to access all of these too! 

8. 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?

Inclusion bases can support young people with DMD but they must not replace the opportunities for young people with DMD to access mainstream classes. There needs to be high level of 1:1 support

9. 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?

Tell them that Duchenne is a severe and complex condition, then list the different types of support your young person needs during the day.

10. How can we help children and families to choose which school is best for their child?

Give families the opportunities to visit all schools and take their preferences seriously. They should not be limited to one school because of access. Take into account the various different Special Educational Needs that can be present in DMD. 

11. What information and help do children and families need about SEND support?

They 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 at the moment – give details if relevant. 

12. Is there anything else you would like to tell us about SEND support?

Young people with Duchenne Muscular Dystrophy require an automatic EHC Plan upon diagnosis. 

Use your own experience to explain:

• 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 have to right to appeal assessments and Provision
• An ISP or school plan will not be enough
• EHCP process needs to be easier but keep young people at the centre
• Provision for extra TA 1:1 support is not available
• 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

We need a choice of local mainstream schools that meet our children’s needs

Complete the SEND Consultation Document by 18th May click the link