Our Education Support Service is a core programme designed to improve educational outcomes for individuals with SMS. Our goal is to ensure positive educational outcomes, increased opportunities for future work or placements in adulthood, and the development of person-centered educational plans for SMS pupils.
Programme Outcomes
- Facilitating smoother transitions through educational stages and finding suitable placements.
- Reducing the need for parents to take time off work or resort to homeschooling.
- Reducing distress among SMS pupils in classrooms and increasing accessibility to education.
- Providing enhanced support for educational settings and teaching staff, resulting in fewer disruptions.
- Accessing vital funding to support successful and inclusive education.
Education Support Service – Theory of Change Model
Online Education Resources
We are developing resources such as parent guideline documents to support parents through the EHCP (or alternative) process. Additionally, we will also provide education recommendations for SEND lead-workers and teaching staff in schools.
Outputs
- Guideline articles aimed at parents with advice on the different education placements and key stages.
- SEND lead-worker educational guidance and recommendations.
- Education short information videos or animations aimed at parents and carers.
- Workshops aimed at parents to share information.
- Education parent/teacher surveys and feedback.
| Estimated Project Cost | Expected Delivery Timeline |
|---|---|
| £12,900.00 | 2023 – 2024 |
1:1 Education Referral service
This referral service aims to provide tailored ‘person-centred’ support to families who are struggling to access an adequate education plan (EHCP) and support within their educational setting. We will collaborate with partners who can help us deliver support and advocate the complex needs of students with SMS.
Outputs
- 1:1 Education Referral Service that guides families in developing person-centered EHCPs or education plans.
| Estimated Project Cost | Expected Delivery Timeline |
|---|---|
| £24,640.00 | 2024 – 2025 |
SEND Policy Campaign
This long-term initiative will focus on advocating and campaigning for positive changes to education policy. Key objectives will include submitting a Greenpaper on Special Educational Needs and Disabilities (SEND) to influence policy and collaborating with rare disease organisations to amplify our impact.
Outputs
- Active participation in SEND policy campaigning, including a greenpaper submission, networking with similar rare disease patient organizations, and addressing challenges in existing legislation to improve educational opportunities for SMS individuals.
| Estimated Project Cost | Expected Delivery Timeline |
|---|---|
| £18,120.00 | 2026 – 2027 |
We anticipate a total programme cost of £55,660.00 over the next five years.
If you are interested in contributing to our programme or any specific Education Support Service initiative, please get in touch.
How You Can Support Our Work
