Educational support

Educational Health Care plans (EHC plan


An EHC plan is usually requested when a child needs a much greater level of support with their learning and access to health and social care, than those of typical children their age. A parent will apply via the school’s Special Education Needs Coordinator (SENCO) and the local authority will assess whether additional support is needed that the school cannot provide.




Support with education


We can help throughout the process by providing emotional support for the family and factual information about the child’s disease to support the request for an assessment and to contribute towards the final EHC plan. We will also help with the annual review of the plan and help families to access relevant information through policies, government guidance, case law and their local educational support and information services.




Choosing a school for your child


You may find it helpful to write the questions down before your visit so that you don’t forget to ask. Also, ask for a copy of the school’s prospectus as this may include further information and contact details. The school website can provide useful information too.




Don’t rush your visit


Allow plenty of time for the visit and think about whether you would like your child to attend with you. Choose a time when lessons are happening so that you get a true picture of the school and the atmosphere and teaching styles. Also ask if you can meet the staff who would be involved in your child’s school day such as class teacher, assistant or SENCO (Special Educational Needs Co-ordinator). Schools are happy to have visitors and will welcome your questions Looking for a school within the Educational Statement process.




Proposed statement of educational needs


If you receive a proposed statement of educational needs for your child you will asked which is your preferred school for your child. So in order to make an informed decision you may like to visit a few schools before you make this preference. Before visiting the school, read through the proposed statement and think about what the school will need to do to meet your child’s needs and what needs to be put in place. Ask the school how they will meet these points.




Awareness in schools


It’s important to spread the word about MPS and related diseases in schools, not only to help the school provide care and support to the affected student but to also let teachers and parents know the importance of an Educational Health Care (EHC) plan. If you would like one of our Support Officers to hold a talk in your school please get in touch with the team.

Many schools choose to fundraise for the MPS Society in our annual Wear it Blue day, visit our school community page to find our how you could get your school involved.




Key questions to ask when choosing a school


Ask if the school would be able to provide any equipment/adaptations your child may need eg hoist, specialist seating. If your child has received funding via a statement how would the school use these funds?

• Ask how your child would be supported outside lessons, such as at lunchtime and playtime. Does your child have to go outside? Does the school offer a buddy system?

• Is the whole school accessible to your child, both inside and out? How would the school overcome potential inaccessibility?

• Are there any after school clubs or a breakfast club? Will your child be encouraged to attend clubs and school activities and trips?

• What will you need to provide for your child? Eg uniform, stationery, books.

• Look at the range and condition of equipment and furniture.

• What IT facilities are there?

• Does the school have links with any other schools? Is there the opportunity for dual registration or outreach support at a special school?

• Does the school have a school nurse?

• Ask for copies of any policies that interest you such as behaviour, SEN or disability/inclusion (these may be available on the school website).

• Are there opportunities for parents to become involved in the school?





Our support team can help you get the most appropriate education for your child, informing Statement of Special Educational Needs and running information workshops for schools and other professionals.

Contact us

9-5pm Monday-Friday: 0345 389 9901

Out of hours support line open 5pm-10pm Monday-Friday and weekends:

07712 653 258

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We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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© 2020 Society for Mucopolysaccharide Diseases