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If you or your child’s education setting think that your child will need additional support (over and above what would reasonably and normally be provided in mainstream education) in their nursery or school, you can apply for an Education, Health and Care (EHC) Needs Assessment.

A child whose health, education or social care needs cannot be met by the resources that a typical mainstream school (or nursery) would be able to provide through an Special Educational Needs (SEN) Plan.

Many, but not all, children who have SMA, need a lot of support at home and when out and about. They may need therapies from external specialists, or specialist equipment beyond what a mainstream school can provide. They may need an EHCP to support this.

If you think your child is going to need a lot of support at school to ensure they can access learning opportunities and at the same time ensure they are safe and healthy, talk to your child’s early years worker (e.g. portage / nursery SENCO, if they have one), GP or health visitor, or members of your child’s specialist team.

An EHC Needs Assessment is the first step towards getting an EHC Plan. It’s a legal process carried out by the local authority and is quite separate from any other assessments or plans your child may have.  It can be requested by you and/or your child’s education provider in writing at any stage during your child’s education.

The request should explain how your child’s SMA impacts on them day to day, for example:

  • their mobility
  • ability to manage with any changes of clothing – outdoors to indoors, for sports
  • ability to hold a pencil, turn pages, use a keyboard
  • safety at lunch times and break times

It should describe any extra support your child has already received from education, health or social care services and say why you feel your child needs more help than the education setting can reasonably provide.

The local authority must tell you in writing within six weeks whether they are going to assess your child. They will then gather information about your child’s needs from you, your child’s education setting, health and social care services and any others whose views may be important.

Once the assessment has been carried out, the local authority must decide whether to issue an EHC plan.

Contact has a lot more information about applying for an EHC Plan including a checklist to help with a Needs Assessment. They also have  information about what happens in Scotland, Wales and Northern Ireland.

If you have any difficulties accessing an EHC Needs Assessment, get in touch with Contact or SMA UK Outreach and Support

There is no national standard format for an EHC plan. However, it must have the following clearly-labelled sections:

A: The Views, Interests and Aspirations of You and Your Child

This can be a useful quick summary of your child. It should be based on information given by you and them. It’s not legally binding, so the main detail of the plan shouldn’t be in here.

B: Special Educational Needs (SEN)

The Special Education Needs and Disability (SEND) code of practice defines four broad areas of possible SEN. Many local authorities use these sub-headings in their plans, but they don’t have to. The areas are:

  • Cognition and learning.
  • Communication and interaction.
  • Social, emotional and mental health.
  • Sensory and physical.

C: Health Needs Related to SEN

You would expect to read accurate information about the impact of your child’s SMA in here including, for example, any difficulties with eating, breathing, arm and leg weakness.

D: Social Care Needs Related to SEN

This would cover things like any support your child needs to join in with activities outside home and nursery / school.

E: Outcomes – How the Extra Help will Benefit Your Child

This should describe what your child will be able to do as a result of getting the extra help outlined in the EHC plan. This may be about reaching a particular educational level, or things that are important to your child, such as being able to take part in an out of nursery / school activity.

F: Special Educational Provision (Support)

This section should describe how your child’s needs outlined in B will be met in nursery / school. It should be very clear about how much help, how often and who will give it. Therapies such as speech and language therapy would usually be in this section.

G: Health Provision

This section should describe what is required to meet your child’s needs outlined in C, for example medication, equipment such as a wheelchair, physiotherapy, nursing support with tube feeding, suctioning or non-invasive ventilation.

H: Social Care Provision

This section should describe what is required to meet your child’s needs outlined in D. This might be short breaks, out of nursery / school activities or support for your family at home.

I: Placement

In a draft plan this must always be left blank, because this is when you can tell your local authority what nursery / school you want your child to go to if that isn’t already settled. Once confirmed, the plan will name the  nursery / school your child attends.

J: Personal Budget Arrangements

A personal budget is not extra money but a more flexible way of using the funding allocated to your child. You have to have made a request for this. See our separate section on Personal Budgets & Direct Payments – see Support Packages on this page.

K: Advice and Information 

This lists all the information and reports gathered during the EHC needs assessment.

Once you receive your child’s draft EHC plan, you have 15 days to give the local authority your views about what’s in it. The final plan must be issued within a maximum of 20 weeks of the initial request.

The plan will be reviewed annually and may be changed but will remain in place until your child leaves education or the local authority decides that your child no longer needs the plan to help them in their education.

If you move to another Local Authority in England the plan will be transferred with your child but EHC Plans have no force outside England.

Contact has a lot more information about EHC Plans including what happens if you move. They also have information about what happens in Scotland, Wales and Northern Ireland.

Your local authority must review your child’s EHC plan at least once a year to see how your child is getting on and if the support they are receiving is sufficient to meet their needs.

A. Who Takes Part

Your child’s nursery / school organises this meeting and must include invitations to:

  • You, their parent(s)
  • The headteacher of the school
  • Someone from the local authority special educational needs (SEN) department
  • Someone from the local authority social services department
  • A health professional.

The school may also invite other people involved in supporting your child, for example their teaching assistant. In practice, who attends will depend very much on your child’s needs and circumstances.

The school will ask the people they invite, including you, to send in written reports in advance. These must be circulated to everyone invited at least two weeks before the meeting.

B. Getting Ready For The Meeting

You might want to think about:

  • Is there anyone you would like to come with you to the meeting or to send in a report? The school or local authority doesn’t have to invite anyone you request, but they must take account of your wishes, views and feelings and those of your child. You might want someone who knows your child well to support you to speak up, such as an SMA UK Outreach Worker.
  • Do you have any other reports or evidence you would like to send in? These might be from private practitioners working with your child or from people outside their education setting, such as a swimming coach or a youth club leader.
  • How would you like your child to be involved in the review? Your local authority has a duty to consult your child. School and family can decide together what is appropriate. For example, children may complete a feedback sheet which has smiley faces to tick and a place to record a comment; some schools carry out ‘child-centred’ reviews, where the child is present throughout.
  • Do you want anyone to go with you to take notes? This could be a partner, friend or relative.

C. Giving Your View In Writing To The Meeting

The local authority or nursery / school organising the review meeting will ask you to send your views in advance. They may send you a form to fill in, but you don’t have to be limited by this.

Think about the past year and what has gone well, or not so well, in your child’s education:

  • Has your child met any targets that were set at their last review?
  • How is your child doing both in terms of their learning and socially?
  • Have there been any problems at school, for example, bullying, attendance breaks due to health needs and hospital stays?
  • If you need to ask any questions about your child’s progress or support at school, make a note of these.

You should have received copies of any written reports that professionals have contributed to the annual review. Go through all these reports and make a note of anything you would like to discuss at the meeting. Go through your child’s EHC plan carefully. The annual review is your chance to say if you think the EHC plan is still correct or if any changes need to be made.
It’s also a chance to ask for a personal budget if you didn’t do this when the EHC plan was first made. See our section on Personal Budgets and Direct Payments (under Support Packages on this page).

D. The Review Report

Following the meeting, the headteacher must write a review report with recommendations for any changes that should be made to your child’s EHC plan. You will get a copy.

Within four weeks of the review meeting, the local authority must make a decision about the recommendations in the report and notify you, the parent.

If you disagree with the local authority’s decision, you have a right to go to mediation and / or appeal.

Contact has a lot more information about EHC Plans including appealing a local authority’s decision. They also have information about what happens in Scotland, Wales and Northern Ireland.