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.

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…

Draft Strategy for meeting the needs of Children and Young People with Autism in North Yorkshire

On Friday I attended a meeting entitled ‘Consultation on draft Strategy for meeting the needs of Children and Young People with Autism in North Yorkshire’.

It was the last of 13 such meetings organised by the Access & Inclusion office of North Yorkshire County Council conducted over a 12-week period. As such, it was billed as

an opportunity to let us know what changes and improvements you would like to see and also to tell us what is working well.

The results of the consultations are to be reported to the Executive Members for the Children and Young People’s Service (so called since 2006 when the Education and Children’s Social Care departments were amalgamated) in September this year.

We received notification of the consultation via a letter sent home from school with Harry. It was explained at the meeting that parents of all children with a Statement of SEN had been sent a letter but that those of children in mainstream school had not. In those cases, the SENCOs were given the responsibility of informing parents. However, it became clear at the meeting that news of the consultations had not filtered through to some parents of children in mainstream school and there was a feeling expressed that such children were ‘invisible’.

The meeting took place on a day when extreme weather conditions were forecast. There were deluges across Yorkshire and parts of Scarborough and Filey suffered flooding. Perhaps for this reason the consultation was poorly attended (or perhaps because it was the final meeting scheduled). There were only 5 parents along with 3 members of staff from Ryedale Special Families.

Andrew Terry, Assistant Director for Access & Inclusion set about explaining the draft strategy and how it would move things forward. He noted that, whilst there was a legal requirement for an autism strategy for adults, there was no such requirement for children and young people, a fact which shocked me.

I pointed out early on that the draft strategy referred to the age group of 0-19 and that, in the light of the government’s Green Paper, the strategy ought to mirror the new age range of 0-25. They acknowledged that there had not been time to alter this but that it would be changed by the time the strategy was finalised.

One of their priority actions is to work with the Voluntary Sector in increasing autism awareness  through TESS (there are an awful lot of acronyms bandied about in such documentation) – Training Education Short Breaks Service. And to widen training in autism for professionals within NYCC. Parents noted examples of teachers in mainstream school who seemed to have little if any understanding of autism. It was also apparent that in some cases there was little by way of support for the child in school via ASCOSS (Autism Spectrum Condition Outreach Support Service) and none at all for parents.

They intend to increase the provision of parental support programmes such as Cygnet, Ascend, EarlyBird and EarlyBird Plus. I noted that I had never heard of these programmes and they needed to be more widely publicised. The council intend to produce a pack of information for parents of newly-diagnosed children. Those present noted that support groups were not always the first port of call for parents in this situation and I wondered whether a web page or other use of social media might provide a useful means of support for parents who felt physically and psychologically isolated.

The council has embraced the need for integrated assessment. It acknowledged that until quite recently there had been a ‘blockage’ in the assessment process based in Scarborough but it was felt that this had now been removed and the waiting period had been reduced to approximately 6mths. It was noted that during this time some parents had gone to Newcastle and had had a very good experience of the diagnosis pathway there. Unfortunately, this then caused difficulties back in North Yorkshire to the extent that one parent was accused by healthcare professionals, and I use the term loosely, of being ‘disloyal’. The council were aware of this particular case.

Another focus area is to give parents greater control and influence. Parents stated that they felt they had little choice when it came to choosing the right school for their child; that any choice was in fact removed. It was made clear that parents are the best sources of information about their child’s needs but that very often their voices are not heard.

Mr Terry then went on to talk about North Yorkshire being a Local Pathfinder for SEND. The council needs to identify gaps in provision and encourage better integration of services. They are aiming to achieve National Autistic Society accreditation for ASCOSS which may be difficult considering some parents experience (see above). I asked that they remove the requirement for students to apply to local post-19 colleges even when they had no hope of attaining the minimum entry level requirements. They seemed shocked and surprised that this was the case, agreed that it was pointless and promised to look into it.

He talked about the ‘Local Offer’ and that they were looking to introduce an element of residential living to provision in Scarborough. One of the parents present said that her children had chosen residential college courses because they wanted something to do after 4pm. I added that students are discouraged from mentioning extra-curricular activities when applying to these colleges becasue they are not supposed to be taken into account by the Local Authority. I also stated that courses needed to be ‘meaningful’ to students; not just opportunities for role-play. This is why residential living is an essential aspect of such courses.

Others attending the meeting were also able to highlight their own particular grievances. Mr Terry noted that they had had one or two cases brought to their attention at each consultation they had held and they had been able to look at them individually back at County Hall.

One parent noted that the provision of summer holiday activities was mired in unnecessary paperwork resulting in her son missing out on activities. Mr Terry did not see why multiple applications needed to be made.

Another parent who attended pointed out that the lack of social workers (there is only one) for the post-19 age group was having a serious impact on families in the Scarborough area. As a result she has two children who will be completing their studies at residential colleges this summer and will be coming home with no support package in place. She has been forced to resign from a job that she loves and which she is good at (in autism advocacy) as a result and pointed out that she and her adult sons will therefore become a burden to the state through no fault of their own.

I found this particularly depressing. What is the point of the council funding such expensive residential placements (approximately £40,000 per year) to give young people the independent living skills and job training they need if all they are going to do when they complete their courses is to end up back at home with mum and dad?

If parents or carers have been unable to attend a meeting and would like to inform NYCC of their views you can respond by the end of July 2012. I would urge all those with responsibility for young people or children with autism to make their views known. I will certainly be putting my views in writing.

• by letter

Accessing & Assessing Social Activities for Autistic Adults

Today I made the difficult decision to cancel one of Harry’s two weekly social activities.

For the last few months Harry has been going to his school’s Youth Club which takes place on a weekday evening from 6pm till 8pm. His attendance was suggested by a member of the Adult Services team who attended Harry’s Statement of SEN review in January and we were very grateful for the opportunity to extend Harry’s social activities. (Up until that point I didn’t even know that school ran a youth club even though he’s been attending this school for 18mths).

Perhaps our distance from school meant teachers thought we wouldn’t be interested. His school is a 45 minute drive from where we live so, in order to attend, various other support processes would have to be set up. For instance it would be pointless in Harry going if it meant that we would have to take him and bring him back. So, Adult Services suggested that they could arrange for a worker from MENCAP to collect Harry at the end of the school day, walk with him to the nearby community centre where Harry could access their tea-time service, and then accompany him back to school for the start of Youth Club.

In order to avoid the hour & a half round trip to collect Harry at the end of Youth Club we decided to ask his school taxi company to provide that service – at an additional cost to us of £30 a time. When I discussed the possibility of Adult Services covering the cost within his ‘funding package’ I was told that Harry was in receipt of Disability Living Allowance (DLA) and that this was what DLA was intended to cover. So be it! On top of that we also had to find the cost of his tea at the community centre, a further £2.60. Again, that seemed reasonable enough if it meant that Harry was getting the chance to interact with his peers, and perhaps even making a few friends.

Harry started going to Youth Club a few months ago. But I soon heard from people who saw him at the tea time service that he looked a bit lost, sat on his own and didn’t join in with activities. And, although Harry isn’t the most talkative of people, it seemed to us that all he really seemed to do at Youth Club was watch films. Admittedly, this is one of his favourite activities but it didn’t seem to us to be a particularly ‘social’ activity and we expressed doubts at to the value of his attendance.

Last week those attending Youth Club took advantage of the warm weather and walked to a local pond where they fed the ducks. This made a nice change from sitting indoors watching films but at a cost of £32.60 a week we felt it was time to acknowledge that it wasn’t making the best use of Harry’s DLA.

So, today I called Adult Services, explained the situation and asked them to cancel the support work provided by MENCAP. They were very understanding and told me that, in the meantime, they had been in touch with Action For Children to see whether they could offer any activities that Harry could access.

Until then, Harry is back down to one social activity a week…

The End of Statements

Last week I attended a Pathfinder workshop on the government’s green paper into the future of the assessment process for children with Special Educational Needs & Disabilities (SEND).

It was entitled “A new way to help young adults to plan what they [sic] want for their future: a single assessment process and one ‘Education, Health and Care Plan’ bringing together support for children and young people from birth to 25, and focusing on better life outcomes beyond school or college.”

You will notice that this title mentions ‘young adults’ and it became clear that the primary focus was on school leavers in the area aged 16 plus. It may be that other workshops focus their attention on other age groups and I would urge parents to find out if there is a workshop in their area and attend in order to make their views known.

The government tender to run these workshops was won by Preparing for Adulthood and the one I went to was attended by about 30 people, mostly from the education, health & social care organisations in the area. They included deputy head teachers of Special Schools, staff from Further Education Colleges, representatives of council departments and careers advisers but noticeably few parents. Although some parents attended under the auspices of the local Parents & Carers Forum (PACF) I counted only two independent parents/carers, of whom I was one.

It was made clear from the outset that what goes into the new bill to reform SEN assessments will be informed by what comes out of these pathfinder workshops. There is a sense of urgency to reform and so this new Single Plan is going to come into being quite quickly. However, quickly in legislative terms (2014) turns out to be not so quick for those children/young adults and their families who are desperate to get some sort of plan in place now!

This new document will replace the Statement of Special Educational Needs. The intention is that it will be formulated by the young person and their family and then relevant bodies will have to work out how best to meet that person’s needs. If anyone has ever been involved in Person Centred Reviews or Person Centred Planning then the new document will follow that sort of format.

The government is looking to learn from previous programmes which you may (or in my case, may not) have heard of, including: Transition Support Programme, Getting a Life and Valuing Employment Now. It will also build in elements of existing documents including the Statement of SEN, the Learning for Living and Work Framework and the various needs assessments questionnaires.

During the course of the day we worked through topics such as:

• What is your vision for SEND young adults in the area?
• What is working and not working now?
• The Single Plan: do person-centred planning questions help?
• What should the next steps be after today?

Of course, as is the tendency with most of these type of events, those in attendance have their own particular agendas. They all want to keep their jobs, their departments and, most importantly, their budgets. However, what will change in future is that there will be joint commissioning, hence references to the ‘Single Assessment’, ‘Single Plan’ and the ‘Education, Health & Care Plan’ in which all services currently engaged in supporting a young person will have to work together.

I have to say that, although we were few in number, parents’ voices were heard (loudly and with some emotion) and our opinions noted.  We were all of the mind that we wanted our children to have the opportunity to attend residential colleges. Whereas local day colleges give students the chance to role-play life skills; only colleges with a residential aspect give students the chance to put those life skills into daily practice in a meaningful way.

If for no other reason, such events are useful opportunities to meet those people whose decisions directly affect your child. For example, I talked to teachers from Harry’s past and present special schools, managed to bend the ear of his Connexions advisor and made contact with members of the adult disability services team. I would advise any parent to do the same. Get your face and name known, along with that of your child.

I hope it was enough…

Red Tape & Bureaucracy Wastes Parents’ Time

Our preference is for Harry to attend a residential college. We have gone through all the processes listed in my previous post: read the NATSPEC directory from cover-to-cover, decided which colleges to visit, attended Open Days, made visits & taken Harry for assessments.

We picked out three colleges and visited them all within a space of ten days in Autumn 2011. In so doing we were easily able to make comparisons between the colleges because all the visits were fresh in our minds. All three of us came to the same conclusion: we dismissed one college and had picked the same two remaining colleges as our first and second preferences.

The process is far from over, but as far as application deadlines are concerned we are ahead of the game.

However, in order to comply with advice given by our Connexions advisor we also have to approach our nearest college of further education. I bit the bullet this week and decided to contact them.

I had Harry’s most recent Statement of SEN to hand and phoned the Learning Support Unit to ask them about the only course they run which is suitable for Harry. The upshot was that Harry was nowhere near the required entry level in the National Curriculum. Whereas he is at M4 & M5 (Milestone levels) for literacy & numeracy; the minimum entry level for the course is Entry Level 3.

So, my question is, why do we need to continue with the farce of making an application? Harry’s most recent Statement should be sufficient to prove to any funding body that our ‘nearest local college’ cannot meet his needs.

I asked for this to be put in writing (a requirement in order for us to pursue residential college applications) and was told that it was not a priority for them, i.e. because Harry is not due to start college until September 2013.

A basic e-mail would suffice. Is that so much to ask for?