There Can Be Only One

Monday 16th September 2013. C-Day. College Day. We had had the whole weekend to pack but there were still some last-minute additions to the bags: a 4″ figure of David Tennant as Dr Who, an empty bubble bath container in the shape of The Stig from Top Gear, Harry’s nightlight. We were all quiet and a little subdued. Grandma told me that she’d had a chat with him that morning and Harry didn’t really understand what was happening and that just made everything worse.

We set off at 8am, dropping Harry’s sister at school on the way. I had to remind her to say goodbye to her brother because she wouldn’t be seeing him for five weeks. Typical teenagers’ forgetfulness. And then it was just the three of us. We left Yorkshire in glorious sunshine, encountering showers and then more sunshine as we neared college. A perfect metaphor for the day: sunshine & showers; bitter-sweet.

A knot the size of a grapefruit formed in my stomach (and it wasn’t the bacon sandwich eaten half-heartedly at the motorway service station). Time to act: put on a smile, adopt positive body-language and come up with cheery chat. Having registered our arrival we joined the human conveyor-belt of interviews with various members of staff.

Travel

The travel co-ordinator asked about our plans for half-terms and holidays. “It is college policy to promote the independence of students and wherever possible we encourage students to make use of the transport services provided by us.” Harry could travel home by coach or train with groups of other students accompanied by staff as far as Manchester. We decided this was an aspect of independent travel training we would like to work towards but felt that October was too soon and elected to go and collect him instead. We got the impression this was a rarity. Not for the first time I felt like I was being an over-protective parent. I made a mental note to download the application forms for a Disabled Persons Railcard.

Health

Next it was on to the college nurse. All her questions were directed at Harry but he was unable to answer the majority of them. He was able to acknowledge that his address was correct but not his date of birth. And he often forgets how old he is. We handed over Harry’s proof of NHS prescription charge exemption (a copy of his HC2 Certificate for full help with health costs) and a form agreeing to him being given an anaesthetic if necessary. We explained that Harry’s ear infection had recurred over the weekend (great timing) and that he would need help administering the prescription spray. We tried to remember the numerous minor operations he had as a child. I gave her the Occupational Therapy report produced after Harry had left school and far too late to be included in the LDA.

Harry went off with the medical staff to be weighed and measured: 5′ 10″, 9st 2lbs, BP 124/77. No medications, no allergies, no dietary conditions. “An easy one!”

Education

Our next stop was with the curriculum co-ordinator. He took Harry’s photo (not a good one, H refusing to look at the camera directly) and spent more time discussing how student photos might be used in promotional material than in Harry’s timetable. He hadn’t received the form which showed that Harry’s preference was for vocational modules in Hospitality and Retail and so had produced a timetable which took in H&R but also aspects of Land Based Studies (Practical Skills and Horticulture), Catering Studies and Arts, Media & Business Studies. I panicked a bit because Harry has an aversion to getting dirty and doesn’t like animals other than our own pets. But it’s only for a couple of weeks until Harry’s skills and preferences can be determined. And ultimately one area of study has to be picked because “study programmes are being introduced by the DfE from September 2013. The programmes will form part of the curriculum offer. The aim is to maximise the potential of young people to progress in education or employment.” (College literature)

Social Life

He double-checked which sports and social activities Harry wanted to include in his timetable: darts, football (H not sure), gym (not sure), horseriding (limited availability), swimming (H isn’t keen but dad thought it was a good idea and had packed his swimming trunks). From the list available I can imagine he would love Out & About Xtra Club (Monday 5.15-7.15pm), Music Club (Tuesday 5.15-6.15pm), Drama & Karaoke Club (Wednesday 5.30-6.30pm), Disco (Wednesday & Saturday) and Walking Club (every other Sunday 2-4pm). But will he be made aware that they are available?

Speech and Language Therapy

The therapist explained that at one time she would have seen every college student. Due to cutbacks she can now see only those students who have SaLT indicated in their assessments. She didn’t have a report from Harry’s SaLT at school because they hadn’t produced one. He had only been getting input during his last year at school but I am glad that I persevered in pushing for it to resume since it will undoubtedly help him. I promised to send her his last report from 2009, along with a report from his class teachers in 2012 so that she would at least have something.

Finance

Here we handed over Harry’s medical card and a form allowing him to be registered with the college doctor. They needed his Unique Learner/Pupil Number which I found on one of his SEN Review reports. And his NI number. They needed to know which benefits the student receives. And if your child is taking their own TV to college they need a TV licence. We decided it would be better for H to watch TV in the communal lounge: more chance of socialising that way.

How much personal allowance should Harry be given every week? How long is a piece of string? Harry has a wallet which I load up with cash when he gets taken out on trips but otherwise he’s like the Queen: he doesn’t need money. The finance officer mentioned that he might like to buy a soft drink, sweets or a magazine. I’d rather he didn’t. I explained that Harry has to use prescription toothpaste high in fluoride in order to control the extra plaque that builds up because he is unable to brush his teeth thoroughly. As for magazines, he loves his dad’s old Empire mags but he can’t read them, he just looks at the pictures picking out familiar characters/actors. So, for Harry to spend his allowance on magazines would be a bit of a waste. Wouldn’t it?

The highlight of college weekends is the trips out: musicals in Manchester, Birmingham, Wolverhampton; castles; museums; football matches; zoos; train trips. There is a lot to choose from. If asked, Harry would probably say ‘yes’ to everything. He would love the theatre trips but hate the shopping trips and museums. I circled the trips I thought Harry would enjoy between now and the Christmas holidays and the cost came to about £350. Looks like we’ll be topping up the allowance pot before too long.

However, I was a little worried by the talk of “rounding up” students to go on undersubscribed trips and I’ll be checking the statement that comes through from college with this in mind. (Controlling again. Can’t help it).

We were exhausted, it was 1.45pm and long past Harry’s (and our) lunchtime. We took ourselves off to one of the on-site cafes and ate lunch in quiet contemplation.

Harry’s Room

After lunch it was time to find his room and unpack. Deep breath. Staff seemed unsure about which was Harry’s room. On closer inspection each door had a name label on in small type. I’d like to have seen a photograph, at least 4″ x 6″, especially for students who can’t read.

The room was small, dark and sparsely furnished. 2 single beds, 2 sinks, 2 wardrobes, 2 bedside tables. It seemed that Harry would be sharing a room. As he was first to arrive he had the pick of the beds. We picked the one nearest the window as it seemed a bit brighter. We put up the posters we had brought and they cheered his half of the room up: Skyfall, Marvel comic covers and Spiderman. We struggled to plug in the extension lead for the bedside lamp. There would have been no room for a TV and none for his digital photo frame. I plugged in his nightlight. A narrow shelf for toiletries. I unwrapped a new bottle of mouthwash and encouraged him to use it. The Marvel comic duvet set stayed in its packaging and was put into the wardrobe but now I wish I had taken the time to put it on. Harry helped to unpack his clothes and with space at a premium, decided to put his football kit on top of the wardrobe. Let’s hope it doesn’t stay there for the rest of term.

I wanted to check that the Care Plan, which I had taken a great deal of time over, had made its way to the staff. Again, it was not to hand and I worried that they would not have read that Harry needs to be shown where the toilets are, that he can’t tell the time or use a phone without assistance. My lip wobbled for the first time.

There was nothing left for us to do. I hugged him and said it was time for mum and dad to go.

Don’t want you to go.

It won’t be long. We’ll see you soon.

Don’t want you to go.

Five weeks and then it’s half-term.

Don’t want you to go.

Oh Harry, it’ll go really quickly, you’ll see.

Don’t want you to go.

I know. But you’ll make lots of new friends and learn lots of new skills.

Don’t want you to go.

I couldn’t think what else to say to him. My eyes were filling with tears and I was determined not to cry in front of him.

Well mum and dad can’t stay here, there’s not enough room.

Don’t want you to go.

I know. I know. But we’ve got to go.

Don’t want you to go.

We put on our coats and picked up the empty bags. One of the other student’s parents were also on the verge of leaving and I saw his mum wiping her eyes. He had settled down to watch TV in the lounge and we encouraged Harry to do the same. A last reminder to the staff that Harry hadn’t worked out where the toilet was in relation to his room. Or which was his room. (Get those photographs up). A last goodbye and we walked away.

Only when we were safely back in the car could we let out all the pent-up emotion. We felt wretched and thoroughly miserable. The drive home was punctuated by tears and the occasional grasp of one another’s hands in supposed reassurance.

There Can Be Only One… First Day at College. The rest have to get easier.

How to Write a Learning Disability Assessment, S139a or EHCP Part I

I’m going to split this into several posts because I want it to be detailed and comprehensive. My post about Drafting the LDA gets the most number of hits on my blog and I’m guessing there’s a good reason for this.

PARENTAL INPUT

Let me make this quite clear. Parents are not supposed to write the Learning Disability Assessment or EHC Plan. However, they have every right to have input into the report and, considering that they are the people best-placed to know their child, theirs should be considered the most valuable input.

BE INFORMED

If you are coming to this post without knowing much about the LDA or S139a please take some time to read this post first; especially the ‘tips’ section towards the end.

WHAT IS INVOLVED?

Our input into Harry’s LDA was substantial (one workshop, seven drafts, several requests under the Freedom of Information Act) but don’t let this put you off. Provided you give yourself enough time (I would allow at least 3 months) and can be methodical in your filing you can do this.

WHAT HAPPENS IN YOUR AREA?

You will already have established that your child needs a LDA or S139a or EHCP. Go onto your council’s website and search using the acronyms shown above. Find out all you can about their strategy. Your child’s SENCo, Careers adviser, teacher/headteacher should all be sources of information and guidance. I can pretty much guarantee that you will be left in no doubt that what the local authority would like is for your child to continue in a local, mainstream setting because that is the cheapest and easiest option. This may be exactly what you want for your child and so you will tailor your LDA to show how best this will work. If this is not what you want then your LDA will need to show the opposite. This was our position.

WHAT TIMESCALE IS INVOLVED?

Before you begin, find out what you are up against. When does the LDA decision go ‘to panel’? i.e. When does the decision get made? In our case the panels sat in April 2013 (but we weren’t informed of the decision until mid-May). The LDA had to be completed by the end of January 2013. I spent October-December 2012 gathering information, writing emails, collating, filing and making absolutely sure I had at least as much information at my fingertips as the ‘panel’ would have; if not more. Be prepared to go to appeal and make sure you know what the appeal process is for your area and how long it takes to put into action. In North Yorkshire it was a maximum of 20 working days.

WHAT DOES AN LDA LOOK LIKE?

Our local authority is North Yorkshire County Council and in January 2012 their initial draft of the LDA consisted of the following. Their headings in bold and their responses contained in “quotes”. My thoughts in italics.

Personal Details: Name, date of birth, address, school attended and whether or not there was a Statement of SEN in place.

Nature of Special Additional Educational Needs: “Harry has Specific Learning Difficulties and a diagnosis of Autism Spectrum Disorder which can cause impairment in social interaction and communication. Limited literacy and numeracy skills and also as a result of his autism, needs instructions to be clear and precise when asked to complete tasks. Finds difficulty coping with change and needs significant preparation.”

Nature of medical/health needs: “Not aware of any.”

Current level of educational attainment (e.g. Pre-Entry, Entry Level, GCSE, etc.): May 2011 – here our advisor listed Harry’s attainment levels in Literacy, Numeracy and Science as shown on his Annual Review Report of that date. There then followed an update from January 2012 when our advisor must have been into school to gauge Harry’s progress. It mentions communication skills, confidence, physical coordination skills, ICT skills, the ability to apply learned knowledge and attention span. From this you can glean that such observations are important within the LDA.

Individual Education Plan: This consisted of 9 bullet points taken from the 2012 Annual Review, including things like: “to follow instructions when preparing lunch” and “to ask an unfamiliar person for directions”. Hardly an IEP!

Details for Transition Plan of long term post 16 objectives (and Pastoral Plan where appropriate): This section went into the past and showed what the plan had been from 16-19.  It goes on to say that local and specialist residential college options had been discussed, as well as Personalised Learning (a massive buzzphrase in our area) and that our preferred option was for ISP (Independent Specialised Provision). It mentions that Harry lives in a remote area and “access to any activities will necessitate travelling by car.” This sentence is actually hugely important because there are massive financial implications.

What support and strategies are currently provided for this young person now and what will be required post 16 (outline the post 16 educational and training options as part of this)? “Harry needs help or to be reminded, to keep on task to complete work or let others know when he has finished. Frequent reminders and reiteration of his routines as this helps reassure him and will hopefully help him settle into his new environment. Harry struggles with pencil control and although he can write over his name he cannot write it independently. He also has difficulty in typing his name independently.” You can see how basic this was and why seven drafts were needed …

What equipment/technological aids are required for this young person post 16?

What assessments and by whom have they been undertaken for this young person? “Speech Therapy”

Contact details of other agencies currently involved with this young person. “Connexions Careers Advisers, Igen Ltd; School Doctor”

What other agencies might need to be involved with this Learner post 16 and what action needs to be taken? “All the above”

Additional Information: There followed a page and a half of observations made in 2009 and October 2012 by two separate Connexions Advisers which was in no order and skipped around all areas of education, health, medical, and personal.

Criterion – there is no local provision that is sufficient in quantity and adequate in quality which can meet the learner’s needs. This was the Careers Adviser’s own note which showed what the LDA was attempting to convey.

Criterion – there is evidence that the learner has medical or care needs which cannot be addressed by local providers. Another note which needed expanding.

USING YOUR AUTHORITY’S LDA AS A TEMPLATE

Once you have a draft LDA it will give you some idea of what you need in order to enhance the panel’s understanding of the needs of your child and to make the LDA the best it can possibly be.

At this early stage our LDA consisted of 5 pages. The content was scattered, there were gaps and there was little detail. A good place to start was in getting up-to-date reports on which to build Harry’s case.

GET UP-TO-DATE REPORTS

The panel will want to see reports no more than 12 months’ old; ideally no more than 6 months’ old.

If they have a Statement of SEN start with your child’s final Annual Review Report. Harry’s last review took place in September 2012 (leaving in July 2013). Make sure you submit your parental  input in good time to be taken into consideration at review. The Report produced after this meeting will be submitted with the LDA so make sure your key priorities are minuted.

As a result of the review you might find that the Statement of SEN needs to be revised to reflect new information, etc. This was certainly the case with us. The most recent Statement will also be submitted so make sure it accurately reflects your child’s needs now.

Again, as a result of the review it might be suggested that other agencies produce reports to support the LDA. It is for you to know whether these will be helpful.  In our case it was felt that a report by the Educational Psychologist would help and we agreed. The report was written with it in mind that Harry would be moving on to an ISP and stressed his vulnerability which we were then able to quote in the LDA.

Harry had previously had an Assessment of Need from his Transitions Manager at Social Services which just needed updating. This document carries a great deal of weight at panel.

Other reports could be from a Speech & Language Therapist (SALT), School Doctor or your own GP, Occupational Therapist, Learning Disability Service and any agencies who have had an involvement with your child. Harry attends regular sessions run by Action for Children and by a local support group and I asked session workers from both to write a half-page report.

NB: If you are unhappy with any aspect of a report don’t hesitate to get in touch with the writer and ask them to revise and reissue.

EXTRACT KEY QUOTES

As each report comes in read them thoroughly and extract key quotes which will be helpful for your LDA.

For example, the local support group reported that Harry’s social vulnerability is an issue which sessional workers became aware of when “there was an incident… where a group of young people.. were encouraging him to do and say things, because of the close supervision of Harry this was very quickly dealt with, but it did highlight the ease in which people can take advantage of Harry, despite high staffing.”

From the Educational Psychologist’s report: “Harry was echolalic throughout the group discussion”; “Harry was unable to engage with me… appearing shy and uncomfortable” and particularly, “Harry presents as a potentially socially vulnerable student as at times he lacks the social understanding and awareness that would be considered to be more typical of young people of his age.” It went on to list 11 minimum requirements for his next educational setting.

From the Learning Disability Service: “I envisage that Harry will continue to require structure and support from staff around his autism and related obsessional behaviours.”

From the Independence Support group: “Unable to use initiative to remove himself from vulnerable situations, and has no awareness of danger, especially when out in the community.”

From Social Services Assessment of Need: “Harry has recently started to receive speech and language therapy in school again and he would benefit from continued support with this” and “Harry would not be able to access public transport independently without support even if it were available.”

From SALT: “He can still become easily distracted and this affects his ability to attend to, and process, spoken language.”

FILE EVERYTHING!

Once the reports start coming in make sure you keep them safe. Buy a large A4 ring binder and create a section called Reports and file them away.

 

Okay. I think that’s enough for one post and in the next one I’ll outline what else you should have in your file and what research you need to do.

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.