What Does The Future Hold?

Last week it was my husband’s 60th birthday. There were  balloons, there was cake and trifle; champagne corks popped, the family gathered and celebrated.

As we get older, what does the future hold for our children?

However, this week I can’t help contemplating the future: for us and for our children. The numbers don’t lie. My husband is 60, albeit a young-at-heart, doesn’t look sixty, 60. His father died at the age of 77 and I know this weighs on my husband’s mind. How many years does he have left? 17? The truth is, none of us know.

With that in mind I wonder how many of you have made a will? You might not have a fortune to leave to your loved ones but if you have a child with special needs you  most certainly have an opinion on who you would want to bring up your child, how and where you want your child to be educated, what kind of future you envision for your child. I know I do.

You can make provision for your child by including a Letter of Wishes with your will. In this you can let those left behind know what your plans are for your child. When Harry was younger my Letter of Wishes included who I wanted to act as guardian, that I wanted him to stay at his special needs school until he was 16 and where I would like him to go for further education. I did the same for my daughter with the proviso that her wishes must also be taken into consideration.

If you wanted to go further you could let your executors know where your research is kept, include prospectuses, etc. Consider what guidance others would need in your absence. I try to keep my husband informed about all the little discoveries I make which could have an effect on Harry’s future.  But if I wasn’t here would he be able to remember everything I’d told him. Of course not.

In the course of completing the Learning Disability Assessment I finally got round to filing all the current paperwork relating to Harry’s education and welfare. It occurred to me that this equates to his EHC plan and would be the first port of call should anything happen to me. A big black ring binder contains:

• Last 12-months e-mail correspondence pertaining to Harry
• Draft LDA (completed LDA to be added in due course)
• Most recent Statement of SEN and Annual Review
• Most recent reports from all agencies involved with Harry
• His social services needs assessment
• His home-to-school transport arrangements
• Financial statements, DLA award details, Carer’s Allowance correspondence
• Ofsted report, prospectus and correspondence from Harry’s (hopefully) post-19 college

To this I am considering adding things like:

• A list of names and addresses of all those people/agencies who have dealing with Harry
• Details of the blog and Twitter account
• A list of organisations which I feel may be useful for Harry in the future: independent living, housing, etc.

We don’t know what the future holds but there are lots of things we can do to help shape the future for our children.

Drafting the S139a Learning Difficulty Assessment (LDA) for 16-25 year olds

All students with a statement of special educational needs (SEN) who are likely to leave school to move on to post-16 education and training are entitled to a Section 139a Learning Difficulty Assessment (LDA)…

The S139a LDA is a written report of the young person’s educational or training needs and the provision required to meet them… [It] helps the young person, their parents and Children’s Services staff to identify and agree the most suitable post-16 learning provider to ensure that their needs are fully considered when matching a placement to meeting their individual needs.  They can then put into place the support the young person needs to achieve new goals in life.

This is a direct quote from Y-Gen’s website.

The S139a LDA is a very important document, not least because it covers the young person up to the age of 25. It is at least as important, if not more so, than the Statement of SEN. Of course, all of this will change when the EHCP comes into operation and it will take the place of the Statement and the Learning Disability Assessment.

As shown above the role of igen/Y-Gen/Connexions should be to assist the student and parents. In reality many of these services cannot be wholly impartial because they have been taken over by county councils. This is where we parents have to become pro-active (don’t we always?) and get really involved in the formation of this important document.

Taking the Department of Education’s guidance to LAs as a starting point:

Early identification of those requiring a LDA is essential to allow time for the commissioning of any necessary provision and support to take place. If your child has a Statement of SEN it is likely that they will require a LDA. Start checking with your Connexions Adviser/SENCO whether your child will be getting a LDA at least by Year 10.

The LDA report must be specific about the level of need required and the support and learning provision required to meet those needs. If your child currently has 1:1 support, a Teaching Assistant, speech and language therapy, occupational therapy, educational aids, etc. it is likely that they will continue to need such aids and support in their continuing education. Make sure that you get regular assessments and check whether targets are being achieved.

The LDA should have a specific focus on the learning programme that is required to enable the young person to progress towards greater independence and where appropriate employment. What sort of educational environment/teaching has worked best for your child? Check out what courses/placements/day services/work opportunities are available. Visit ‘Moving On’ workshops from Year 9-10.

The LDA should take account of the young person’s aspirations and views. Seems obvious, but start talking to your child and exploring the various options with them. Visit colleges and  try to imagine your child in that environment.

The LDA should build on the views, and where appropriate, expertise of other people who have already supported the person being assessed. If it is helpful and will support your case, garner as many reports as possible from, e.g. form teacher/SENCO, educational psychologist, SALT, OT, GP or school doctor, etc. I asked Action for Children to provide a report based on Harry’s attendance at Independent Support Group. Anybody who has had any recent dealings with your child may be able to provide useful information.

Unless the learner/parent/carer has expressly refused permission, the local authority should share the LDA with the college or other education or training provider and do so in sufficient time to ensure provision and support are in place from the outset. The LA must seek your permission before doing this. Make sure that the document you sign refers only to this aspect of sharing, not to signing the LDA itself.

The local authority should ensure that the young person and their parents/carers understand the Learning Difficulty Assessment process and the decisions that are made as part of that process. Find out when the LA panels sit in your area. Check how soon you will be informed of the decision. Be aware of your LA’s appeal process. Some students have missed the first few weeks of their college course because the appeals process was so lengthy.

The LDA should provide robust and impartial information. This is where the supporting reports are vital. They provide impartial, informed, recent, relevant information about your child. You must have copies of all the reports that are submitted to the LA. If you have any queries or there are mistakes in the reports you must get in touch with the writer and ask them to clarify and, if necessary, revise and resubmit their report. Go through each report and pick out the details which will help support your child’s choices, e.g. it was useful for me to be able to identify those professionals who had identified Harry as a socially vulnerable adult.

It is for the local authority to assure themselves that they have made fair and reasonable decisions and have met their responsibilities as set out in legislation. Can the words ‘fair’ and ‘reasonable’ be applied to your LDA? If they can then you have done all you can to ensure that your child’s case will receive the best possible hearing.

My Top Tips, in no particular order:

1. Make sure your child’s Statement of SEN is up-to-date and accurately reflects current diagnoses and levels of support.
2. Ensure that your advisor (the person compiling the LDA) is educated to at least NVQ Level 4 and has experience of working with learning disabled students.
3. Keep a ‘Day Book’: dates (and times if necessary) of all correspondence, emails, phone calls regarding the LDA. Mine is in the form of a spreadsheet and dates back over a year including, e.g. dates of visits to ISPs, when agencies began working with Harry, etc.
4. Get your paperwork in order: most recent statements, annual reviews, reports, assessments, etc. Mine are filed in a large A4 ring binder, tagged so that they are easy to find and refer to.
5. Which agencies are involved in supporting your child? Don’t let SALT/OT/etc slip. If your child is discharged from a service is it because support is no longer required or is it due to a lack of resources/funding?
6. Ask to be copied in on all reports written about your child. You should have at least as much, if not more informaton than the LA. Do not be afraid to query what is written and ask for revisions.
7. If it would help your child’s case to have a Social Services Needs Assessment carried out then ask for one to be done. Reports need to be less than 12 months old to have weight at panel. Harry’s is detailed because we had had a great deal of input. It will be valuable at panel because it accurately reflects Harry’s needs and abilities.
8. Be as informed as possible about the types of provision available to your child at 16-25: local FE colleges, ISPs, day services, work opportunities, placements, etc. Go to ‘Moving On’ events/workshops. Talk to other parents, professionals, agencies, anyone whose opinion you trust/value.
9. Compile your own LDA. You are the person best-placed to provide information about your child. Get a copy of the LDA template from your advisor and make a start. Gather information relating to headings like: nature of SEN, background to learning difficulties, current level of educational attainment (draw attention to PIVATS if your child is working below Entry Level 1), post-16 objectives, language and communication skills, attention skills, equipment/aids required, what assessments and by whom (and when – must be within last 12 months). We are on draft 5 of Harry’s LDA which has been going backwards and forwards for 4 months.
10. I am currently trying to get the following headings into the LDA: personal and social development, personal care and independence, fine motor difficulties. These sections contain factual material which is relevant to the LDA. I have challenged our advisor to put his objections to their inclusion in writing.
11. Compile your own Learner Needs report and try to get it into the LDA. What is your child aiming for? Phrases like “vocational training” and “the desire to live independently” are what the LAs are looking for. Parents need to get across the future plans and aspirations of their child; their desire to make a valuable contribution to the community and to the economy. My 2 page report has also been rejected by our advisor, despite the Guidance for LA’s stating that “The LDA should have a specific focus on the learning programme that is required to enable the young person to progress towards greater independence and where appropriate employment”.
12. Compile your own Local Provider Assessment Reports if necessary. Consult Ofsted reports, find out how many students drop out of the course your child is interested in and at what stage, ask what the outcomes are for students on the course, assess how your child will cope with the environment and what support they will need.
13. If there is any information which has not been included within the LDA which you feel is relevant include this in your Parental Submission which can be listed as one of the reports/assessments.

Remember: there is no requirement for you to sign the LDA if you do not agree entirely with its contents. The only part which needs signing is the agreement to share information for Data Protection purposes.

Edward Timpson MP Clarifies the Proposed EHC Plan

Last week I was sent a .pdf copy of a letter which Edward Timpson MP, Parliamentary Under Secretary of State for Children and Families, sent to Christine Lenehan, the Director of the Council for Disabled Children. I am not sure how widely circulated this letter has been so I thought it worth reproducing it here in full.

The letter is dated 22 November 2012:

Dear Christine,

SPECIAL EDUCATIONAL NEEDS PROVISIONS

I am delighted to be writing to you as Parliamentary Under Secretary of State with responsibility for special educational needs and disability.

As you know from our recent meeting, I am committed to reforming provision for disabled children and young people and those with special educational needs (SEN) and am well aware of the challenges in doing so. Parents should not have to battle to secure the support that they think should be readily available for children and young people with special educational needs and disability. However, in reforming the system we will not lose the aspects that work well. I want to be absolutely clear, the protections that parents and young people have in the current system will be carried forward into the new system (sic). I know first hand the importance of having the highest ambition for children with additional needs.

The Government’s Bill will lay the foundations for our reforms alongside detailed statutory regulations and guidance. I know that parents will be nervous about changes, particularly where they have had to fight to secure the provision that their child is receiving. I want to reassure all parents that our intention is for a better experience for families in a reformed system with a new focus on helping young people towards real life outcomes, including independent living and paid work.

In the meetings that I’ve had with voluntary and community sector organisations and parents I’ve been reassured that we’re moving in the right direction. But there have been some issues raised about the details surrounding the draft clauses that we published. I want to provide reaasurance where I can and ensure clarity where I see misunderstandings have arisen.

The CDC has helpfully provided a list of the main areas in which misunderstandings appear to have arisen and I address these in turn.

1. There is no right to request a statutory assessment and hence no trigger for the right to appeal against the decision of a local authority not to assess.

Parents will continue to have the right to request an assessment and the provisions will go further and ensure that others like a GP or health visitor are also able to make a request. I have heard parents’ concerns about the lack of an explicit right for parents to request an assessment and as I made clear to the Education Committee, I am prepared to amend the clauses as necessary to clarify this.

2. There are no timescales

We will set out in regulations and a new code of practice the detail of the time that parents have to wait for an assessment to be decided. We will look at how we ensure we can reduce the overall time it takes for an assessment.

3. There is no duty to make the provision in an EHC Plan

There is an express duty on the local authority, in the draft clause 21(1) to secure the special educational provision set out in the plan.

4. There is no duty to ‘specify and quantify’ the provision to be made in an EHC Plan

There was no intention to reduce the duty on the local authority by changing the wording of ‘specify’ in the Education Act 1996, to ‘set out’ in the draft clauses, and I have asked officials to change the wording back to ‘specify’.

5. Mediation is compulsory and there are anti-parent penalties

There shuld be no delay in trying to resolve matters as a consequence of independent mediation. The two month period that a parent or young person would have to trigger an appeal would not be affected. The bill includes powers for regulations setting time limits.

The purpose of the pre-legislative scrutiny stage is to ensure the draft provisions will deliver what we want. Therefore, where the draft clauses are unclear, I have made clear that I am happy to go back and look again at what will reassure parents and give very clear messages to professionals.

The 20 local area pathfinders that are testing the reforms are an essential element for learning how the proposed reforms will turn out in reality on the ground. That is why I have decided that we should extend the current programme for a further 18 months beyond March 2013, through to September 2014, and we are beginning to examine the best ways of spreading best practice from the pathfinders to the remaining local authorities. I shall have more to say about this in due course.

Further, I have decided to extend funding for the Achievement for All programme, which has led to significant improvements in academic and wider outcomes for pupils with SEN.

I do hope that this reassures parents and would be very grateful if you could pass these messages on to them.

Yours ever,

Edward.

Edward Timpson MP

Parliamentary Under Secretary of State for Children and Families

The Last Review

Last week we attended Harry’s final annual review for his Statement of Special Educational Needs.

At Harry’s school they carry out ‘person-centred’ reviews which they describe as “best practice and for which we are a lead school.” They are different from some of the review meetings we have attended in the past in that:

• They do not sit around tables (although in practice we all do sit around a table because we all need to take notes)
• The pupil attends the meeting
• The meeting focuses on what the child does well
• The meeting addresses the following issues:

1. What we like and appreciate about the student
2. What is working well
3. What is not working so well
4. What is important now and in the future
5. What support does the young person need to stay healthy and safe
6. Any other areas for discussion

All those in attendance are given a pen and asked to write down their thoughts on whiteboards with these headings.

I find such meetings a bit wishy-washy. I usually end up writing the same things under the same headings every year when what I really want to do is get down to the ‘nitty gritty’.

In theory, all agencies who have dealings with the student will have been invited and should send in a report and/or attend in person. In practice, the same attendees turn up every year.

This being Harry’s last review I expected to see his Transitions Manager (Social Services) and Speech & Language Therapist in addition to the Headteacher, Class Teacher and a member of the Connexions team. However, there was no representative from SALT and his Transitions Manager has moved to another role within the service and a new manager has not yet been recruited.

I had had a good meeting with the School Doctor (an Associate Paediatric Specialist) only a few days before the review meeting. He is relatively new to the post and was making an effort to get up-to-date with the students under his care. He agreed to write a report in support of Harry’s application to residential college. He also agreed to get the Occupational Therapy team to do an assessment of Harry. Harry has not had any OT input for many years, despite having poor fine motor skills and floppy joints.

The Headteacher explained that we would not spend much time discussing what has gone on in the past. Rather, we would concentrate our efforts on planning for Harry’s future, which suited us perfectly.

The Connexions advisor (although that forum and title has been swallowed up into North Yorkshire County Council, I shall continue to refer to him as such) was at pains to stress that he would have to make reference to the Personalised Learning Pathway offered by the college closest to school. He also reiterated that Harry would still have to make an application to our nearest college, despite the fact that he was nowhere near to reaching the Entry Level required by that college.

We expressed our frustration with this system and the Headteacher sympathised with our – and other parents – position. This particular aspect of the transitions process needs to change and change quickly.

The gist of the meeting seemed to be that we need to get as many reports from the agencies that have an input into Harry’s education as possible. These will act as support documents for his application to residential college. He needs an up-to-date Care Assessment from Social Services (anything within the last two years will suffice), a report from Learning Disability Services who have been working with Harry on his stick obsession and an assessment by the Educational Psychologist.

The Connexions advisor hinted that it would be in Harry’s favour that we had chosen a college whose fees were lower than the majority, but that it was unlikely that NYCC would fund a 3-year course, which is what Harry has been offered. They are much more likely to fund a 2-year course instead. At this stage, we would be happy to get funding for two years and then fight to get another year.

I left the review feeling mildly optimistic. It seems to me that many students in Harry’s year are opting for (being pushed into?) the Personalised Learning Pathway. As far as I am aware only one other student will be looking at specialist residential college and I know that his needs can be met by the PLP.

The fact that we live so far away from our nearest college will also work in our favour. We have impressed upon everyone that if we lived closer to college we would not have a problem with the PLP. The Headteacher supports our opinion and stated that their recommendation is highly regarded by the county council.

Now all we have to do is wait for the reports to start rolling in. I shall be cajoling, nagging and prompting from now until Christmas. In the New Year the Connexions advisor will be starting to put together his report and it will pass back and forth between us and him until we are all satisfied.

Roll on 2013…

If You Don’t Ask, You Don’t Get

It’s been a while since my last post… I hope you’ve all had a good summer break. When I have a bit more time (and the photos) I’ll let you know how Harry got on in respite care.

This is just a quick post to remind you that, “If you don’t ask, you don’t get.” I’ve used this old adage numeorus times when advising others but put it to effect this morning on Harry’s behalf.

Just before the summer break a representative of Action For Children told me about an Independence Support group which runs every Tuesday afternoon in the town where Harry attends school. It sounded ideal: a tea-time group attended by young people whom Harry would know and who are given the opportunity – with support – to budget for, plan menus, shop for, and prepare their own meals. I was keen for Harry to get a place and the representative promised to contact Harry’s Transitions Social Care Co-Ordinator (I know, I know).

Today I received written confirmation that Harry had been offered a place in the group. My delight was tinged with trepidation: in the past Harry has had to fund his own transport from social activities. However, in this instance I felt this was much more than a social group because of the focus on gaining independence skills. So, before accepting the place, I phoned the TSCC and queried whether they would provide transport. She asked whether Harry was in receipt of DLA (he is) and stated that this was meant to fund such transport. I made it clear that I was not happy about this, especially because of the value attached to the acquisition of independence skills and reminded her that it would only be for a year, during term-time. She said that this was the message they were told to put across to people but promised to ‘have a word’ with her manager…

Less than an hour later she phoned back, said that she had spoken to her manager and stated that, in view of the distance Harry lives from the group they would be prepared to fund his transport in this instance. I was stunned! I had just been considering whether to get a taxi to collect Harry and bring him home…

So, my advice is: always ask, sometimes you get!

A Trip to the London 2012 Olympics

On Tuesday we went on a once-in-a-lifetime trip to see the London 2012 Olympic Games. And when I say ‘we’ I mean 3, rather than all 4 of us.

We had made the decision when applying for tickets that we would not take Harry. Having returned I am convinced we made the right decision. Harry gets very nervous in crowds and the Olympic Park was nothing if not crowded, let alone the tube travel to get there… For the first time I can remember Harry had told me only last week (when we visited the Ryedale Show) that he felt nervous and held on to my hand when we negotiated the queues. I suffer slightly from claustrophobia so when our return tube train came to a standstill at Canning Town because of a points failure I had to get off and find an alternative route back to our hotel. Harry would have hated it.

Having thought about the things he wouldn’t have liked, some of those he would have loved: the giant screens in the British Airways Live Park; the music played in the Stadium; the cheering; seeing the Olympic flame and the antics of Wenlock and Mandeville. He would also have responded well to the volunteers all around the Park who were more like performers than stewards. As we left the Olympic Park at 10pm they had people singing “If You’re Happy and You Know It” and doing all the actions as they made their way to the train stations. Brilliant!

Yesterday we celebrated our wedding anniversary by visiting the Munch exhibition at Tate Modern, followed by a slap-up lunch at the Oxo Tower. We would have done neither of these things if we’d had Harry with us. In the past we’ve had to have eyes in the back of our heads to check that Harry wasn’t wandering off or touching something he shouldn’t. And there were so many potential ‘sticks’ at Tate Modern it was unbelievable!

In the meantime, Harry has had three days with Grandma and Auntie Ivy, being spoilt rotten. We promised to bring him back a T-shirt (but in truth I got that from Sainsburys before we left) and couldn’t resist some Andy Murray-style sweatbands and a gold Wenlock. He’ll love them.

The Sixth Form Prom in Pictures

I wanted this to be a quick picture post about Harry’s Sixth Form Prom night. They say every picture tells a story and I think that is especially so in this instance.

There are three classes in Harry’s sixth form, with about ten students per class. All students are invited, along with their families, to a sit-down meal followed by a disco. Attendance at the meal is optional and people can just come along for a dance if they want. This suits those students who have difficulties around eating in public.

DJ Ashley finds a fan

The highlight of the evening for the students is undoubtedly the dancing.

“You look good on the dance floor”

Like last year, Harry couldn’t keep off the dance floor.

Take your partners for the tango!

The more confident boys like asking their teachers to dance.

Grace gets a dance partner

The teachers weren’t the only ones getting asked to dance.

Even the shy ones get up to dance

These guys are best friends and both leave school this year. J finds big social occasions very difficult and his teachers were amazed that he even turned up. A very big deal.

L has fun with a balloon sword

L won this year’s prize for the leaver who most clearly demonstrated the school’s ethos. He had a great time celebrating his achievement at the prom.

Everyone takes to the floor

The evening was scheduled to end at 10pm but dancing went on until 11pm.

A lovely way to end the school year and say goodbye to the class of 2012.