School support for your child is of paramount importance through their school years, a one on one carer can provide essential 'eyes and ears' in the event of any significant change in your child's health that might would otherwise potentially go unnoticed by the teacher busy with a classroom full of children.
For any child diagnosed with vascular EDS the Statement of Special Educational Needs is going to be the most important document they need to have so they can seek an appropriate and fulfilling education.
Living with vascular EDS has its daily up’s and downs with your child being tired and restless and they will probably need extra help each day from a teaching assistant as the condition can leave them worn out from simple tasks such as writing. Being at risk from spontaneous ruptures, a one on one assistant at school is also the vital safety link to look out for your child’s health and well-being.
As soon as you receive a diagnosis of vascular EDS you need to get it in writing and ask for a letter explaining the condition to the school because it will mean they need the extra support as soon as possible. This letter (provided by your genetic counsellor) will also support the request for a statement.
A statement is a legal document that sets out the special educational help which your child must receive by law. To be effective, the Statement must be written in accordance with the law and provide detailed information about your child’s difficulties and the help provided to deal with those difficulties. It is not an Educational Statement of needs it is an Individual Medical Statement that the school need to request.
It’s not the most enjoyable experience assessing what help your child needs now and may need in the future. It is important that you must consider the worst-case scenario and ensure that every provision is in place should that arise.
It is a similar process to applying for Disability Living Allowance and just as crucial for your child.
It is natural for parents to want to celebrate the things their child CAN do, not dwell on those that they can’t. But when it comes to filling in documentation for a formal assessment of your child’s needs, you need to fight that compulsion.
There are only a few steps to getting a Statement for your child but don’t let what seems a relatively straightforward process fool you. Each step is fraught with difficulties.
Put very simply, the steps are:
You can ask for a formal assessment of your child’s special educational needs at any time, you just need to put your request in writing to your Local Authority (LA).
The LA has six weeks to decide on your request and should then write to you to tell you of that decision.
If they decide not to assess they should explain why. If you are not happy with this decision you may challenge
it through the First Tier Special Educational Needs and Disabilities Tribunal. The LA must tell you how you can do this and the local Parent Partnership scheme should be able to
If your LA decides to assess you will be asked to tell them all about your child.
This is probably one of the most depressing letters you will ever write about your child because you really need to make it clear all the things they cannot do. Of course, you should mention what they can do, just don’t gloss over their shortcomings.
Remember, this letter will be read by someone who has no idea who you or your child are. If you paint a rosy picture where everyone is coping and the future is bright, then, understandably they will probably assume you don’t need special assistance.
This person is going to be responsible for deliberating if the LA commits to spending a lot of money on your child’s educational needs over the next 12 years so they won’t be just nodding through applications. With the current pressure on councils to cut many services, they’ll be looking to trim wherever they can.
Once the green light has been given, the LA will commission a series of expert reports on your child and a home assessment.
Being pro-active, you might like to tell your LA which experts know your child and would provide useful information, for example, doctors, therapists, or professionals involved in your child’s care.
You should tell the LA when your child is most alert, mornings or afternoons, so they can do a home assessment when your child is wide awake. Make clear when YOU want assessments to take place so they fit around any appointments you or your child might have. You want to have plenty of time when you’re both relaxed and happy.
If any further ideas crop up as the assessment progresses, you should send any additional information or reports to the LA.
Among those the LA could ask to provide information are:
If you think of someone else whose contribution might be worthwhile, feel free to suggest that their views be considered.
You can attend any of the assessments undertaken by these professionals. Make sure you are clear what they are looking for by asking plenty of questions.
You might not deal with many people with their qualifications day to day, but don’t be intimidated by their ‘expert’ standing. Ask as many questions as you like until you are satisfied you understand.
You could ask them:
It’s a good idea to take a note of the assessor’s answers and agree these with the assessor before you leave. It might help to have a friend at home when your child is being assessed, so they can make notes for you, leaving you free to discuss your child.
The Assessment Reports
If you attend the assessments, you can always ask the assessor to send you a copy of the report at the same time as they send their completed version to the LA. If you don’t ask, you won’t be sent it as they would normally just send a report to the LA meaning it might be months before you see one.
The reason for this is because the report has been commissioned not by you, but by the LA. They don’t have to send you a copy, but it’s considered good practice to do so.
When you get the reports, make sure you read them through:
Just because the report is committed to paper doesn’t make it final. So if it’s not what you expected then contact the assessor and ask to discuss it. You might even ask your local Parent Partnership scheme for support.
All the reports go to your LA and they determine whether or not a Statement will be made. It’s not a given so you should be prepared to argue your case strongly here if you suspect a refusal is on the cards.
What if you’re refused?
If your LA thinks your child’s school or prospective school can meet their needs without a Statement then they will issue a Notice in Lieu instead. This might look like a Statement, but it’s not one. If you are in doubt, check with your local Parent Partnership scheme and get them to look it over.
If you are not happy with the Notice in Lieu then you can challenge the LA’s decision not to issue a Statement through the First Tier Special Education Needs and Disabilities Tribunal, which in a world of initials you might see written as SENDisT.
The reason it’s First Tier is that the tribunal is split into two levels. The First Tier hears any appeals against decisions made by a LA about a child’s education. The Upper Tribunal then hears appeals against the First Tier, instead of having the matter go through the High Court as it used to.
We succeeded, but...
If the Local Authority decides that it needs to oversee your child’s education then they will first issue a Proposed Statement. You’ll receive this along with details of what you should do if you want to challenge its contents.
You can ask the LA to change the Statement at this point but make sure that this is all put in writing and be prepared to meet with the LA to discuss your concerns.
You have 15 days to comment and to say which state school, or non-maintained special school or independent school, you want your child to attend.
You can ask for a meeting with the LA and you have another 15 days to ask for more meetings after that. Within 15 days of your last meeting, you can send in any more comments.
If you would like more time to comment, you should talk to the 'Named Officer' at your local authority. This is the officer who you will have been told is dealing with your child's case.
The LA must make the final statement within eight weeks of the draft statement. It will send you a copy with Part 4 filled in with the name of a school. The statement starts as soon as the local authority completes it.
Hopefully you’ll be happy with the contents of the Proposed Statement and agree to its contents. The LA will then issue a Final Statement, naming a school.
If it’s the school you wanted then fine, but if it’s not, or there are any other changes you wanted then you can still challenge through the SENDisT.
If you do want to challenge the Statement, then you need to register your objection with the SENDisT within two months. Just because you’ve chosen this channel, it doesn’t mean you can’t use other avenues to reach a better result like simply talking the matter through further with your LA or using an independent mediation service.
Of course, there are legal firms with expertise in Statement challenges, though this route will possibly be costly.
The Statement Itself
A statement is a legal document that sets out the special educational help which your child must receive by law. To be effective, the Statement must be written in accordance with the law and provide detailed information about your child’s difficulties and the help provided to deal with those difficulties.
The Statement contains six parts:
Part 1 gives general information about your child and a list of the advice the authority received as part of the assessment
Part 2 gives the description of your child's needs following the assessment
Part 3 describes all the special help to be given for your child's needs
Part 4 gives the type and name of the school your child should go to and how any arrangements will be made out of school hours or off school premises
Part 5 describes any non-educational needs your child has
Part 6 describes how your child will get help to meet any non-educational needs
You are sent a draft statement before your local authority writes a final statement. It should be complete except for part four, which describes the type and name of school or education provided out of school. This will be left blank so that you can say what educational provision you want for your child.
Part 1 of the statement lists all those involved in compiling it.
Part 2 spells out exactly your child’s issues and how they will affect their education.
Go through the experts’ reports and make sure everything they noted is in this section in black and white. If you feel they have missed anything, from assistance going in the playground beyond that of a ‘normal’ child, to concentration problems or safe well-being, make your concerns heard.
Part 3 of the Statement spells out how those needs will be met.
It is crucial here that therapies such as physio are included and that it is spelled out exactly how much provision your child will receive. For example, daily one to one lessons with physio.
Equipment must be mentioned here too. If your child needs special physio equipment it should be mentioned here.
It might feel on first read that the Statement is very generous but this might be because it’s the first time your child’s needs have been written in one place.
It might help to have someone outside the family read the document. If you can, show the statement to a parent of an older special needs child at your intended school. Ask if they feel it covers everything.
If possible, show it to the teacher who will be teaching your child. Do they feel they are sufficiently supported meeting your child’s educational needs. Or show it to a nursery teacher who knows your child and ask if they would expect more.
Part 4 is left blank until you are happy with the statement. This is where the name of the school is written.
Part 5 describes any non-educational needs your child might have.
Part 6 lists any agencies outside of education which may be involved meeting the needs listed in part 5, for example, social services.
Your child’s Statement should be reviewed every year by law. The point is to review the educational progress of your child against the targets detailed in their Statement and decide whether or not the Statement still meets their needs.
Ordinarily, your child's school will invite you to a review meeting and ask you to send in your views on your child's progress over the past year.
At the meeting you will look at written reports and at your child's Statement, and will see if it needs changing in any way. You should also be asked for your views on your child's progress. Schools often invite representatives from the Local Authority, health specialists and therapists to the annual review although they are not obliged to attend.
It is crucial that if you have any concerns about your child’s education you raise them now. The school will have to list your issues in the minutes of the meeting.
After the meeting, the school sends you a copy of its report which the head teacher sends to the LA recommending any agreed changes to the statement.
This must be within 10 working days of the annual review meeting or by the end of term, whichever is sooner.
Following the annual review, and if required the LA may agree to make changes to your child's statement.
Changes may be made if:
Once you've heard any decision from your LA, you have up to 15 days to ask for a meeting to discuss the changes it wants to make. You must be told the LA’s final decision and any changes it has made within eight weeks of suggesting a change.
If the changes are to Part 4 of the statement (changing the name of the school), you have the same rights to choose a school as you had when the statement was made.
You also have the right to ask the LA to change the name of the school in your child's Statement, if it is at least 12 months since you asked for a change or since the Statement was made or changed.
When your child is in the last year at their school before going to another school - say, when they are moving from primary to secondary school - the recommendations of the last annual review before the transfer are important in helping you and the local authority decide the school your child should go to.
The LA must change Part 4 of the Statement by February 15 in the year your child is due to change schools.
If you disagree with the changes you have the same rights as when the Statement was first made. Your LA should tell you about the local arrangements for resolving disagreements and your right to appeal to the Special Educational Needs and Disability Tribunal.