Category Archives: Healthcare

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.

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Harry Gets An Offer of a Residential Placement

I now know the meaning of a ‘red letter day’. On Monday we got an offer for Harry of a residential placement at our (and his) first choice college. I was unable to open the letter straightaway; instead I had to make myself a coffee in preparation. When I read the words, “I am pleased to be able to offer Harry a residential placement…” I felt tears spring to my eyes. This was what we had been waiting four weeks to hear.

Attached to the letter were a further four pages: one was a summary of their pre-assessment report. Another was a more detailed assessment of Harry’s numeracy and literacy both of which indicate that he is working at a Pre-Entry Level. The remaining pages give an outline of the programme of learning on offer and a provisional weekly timetable, both of which fill me with hope and delight that they will provide Harry with a fulfilling and meaningful time at college.

I realise that I am jumping the gun somewhat in setting so much store by this offer. And that I probably shouldn’t even be blogging about it. But I intended this blog to be ‘warts and all’. So, if, ultimately, Harry doesn’t get this place those who have read the blog will have a sense of what he has missed out on.

The offer letter makes it clear that funding approval is yet to be granted (and is something we will not receive confirmation of until May 2013) and mentions a fee banding of F. I managed to find out that that indicated annual fees of £42,000 which is an extraordinary amount of money. However, I have to remain optimistic that the Local Authority will approve funding, especially since there is no provision for Harry locally.

So, forgive me if I wax on about the offer but I find it interesting in that it is so specific. They have obviously spent the last four weeks working out an individual programme for Harry which is:

  • The development of Functional and Key skills, which will be integrated throughout his curriculum (his curriculum!)
  • A general programme of vocational education with access to external accreditation
  • An Independent Living Skills programme to enable him to achieve the maximum independence possible for post-college life (be still my beating heart…)
  • A Personal Development programme to encourage him to acquire the skills for citizenship and support in forming relationships with his peers (something which Harry desperately needs)
  • Teaching matched to his identified preferred learning style (verbal instruction in a practical setting)
  • Leisure activities which will include out of college trips, supported use of public transport to access local facilities and a wide range of sporting options and clubs, plus a full programme of College entertainment during evenings and weekends (sounds too good to be true doesn’t it?)

This last element is not perceived by LAs to be of importance. When applying for college places we have been advised not to mention extra-curricular activities as a reason for applying. But it is absolutely vital that our children can have access to a social life, especially during this formative years of late teens going into early twenties. When a neurotypical child goes to university one of the key reasons for going (whether parents like it or not) is to experience the social life of a student. Why shouldn’t our autistic children have the same opportunities?

The offer letter goes on to detail Harry’s support requirements as follows:

  • Specialist teaching and enabler for 28hrs/week (1:4)
  • Structured programme of residential learning – 3hrs of 1:1 equivalent
  • Social, creative and leisure activities – 1hr of 1:1 equivalent
  • Support with personal care and activities of daily living at approximately 1:7 making 7.85hrs of 1:1 equivalent per week
  • Medical Centre support 0.4hrs of 1:1 equivalent per week
  • Immediate access to counselling support 0.2hrs of 1:1 equivalent per week
  • Immediate intervention for emotional support 0.2hrs of 1:1 equivalent per week
  • Speech & language therapy 0.25hrs of 1:1 equivalent per week (this is the only area I have a slight quibble with, it doesn’t seem very much)
  • At the end of the first term the College Assessment Tutor will prepare and forward a Baseline Assessment Report
  • Guidance by the College Assessment Tutor to develop his Individual Learning Goals
  • A first year review meeting to discuss his Individual Learning Programme and progress
  • A three-weekly 1:1 Personal Tutorial to review his progress and support needs
  • A Transition Review meeting in the first or second term of his third year to plan his post-college opportunities

In summary the college will provide 13.5hrs of 1:1 teaching equivalent and 8.9hrs of 1:1 care and therapy equivalent.

Finally, the college attached what it refers to as a ‘pro-forma timetable’ showing that if he went, Harry would be doing, e.g. Breakfast Life Skills on a Friday morning from 8.15am till 10am, a Vocational Course leading towards Skills for Working Life with Speech and Language Therapy integrates on Monday afternoons and Community Access 1:3 on Friday afternoons.

I can’t tell you how happy that single page makes me. His days will be filled from 9am till 5pm with meaningful learning, extra-curricular activities he loves and opportunities for integration. At this very moment my cup is much more than half-full; it is overflowing. And I’m going to savour it for some time to come.

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.

A Visit to the Dentist

Trips to the dentist used to be filled with trepidation. Would Harry ‘behave’? Would he comply? Would there be a tantrum? Thankfully, as he has got older he has become less anxious and dental appointments have become easier.

That is not to say that dental hygiene has become easier. Harry has never enjoyed the sensation of brushing his teeth. We have tried electric toothbrushes and novelty toothbrushes over the years but he remains singularly unimpressed with the activity.

Recently he has become intolerant of any intervention on our behalf, insisting, “I can do it myself”. And to some extent he can. Harry is right-handed and he is able to manage some quite vigorous brushing of teeth on the left side of his mouth. But when it comes to changing grip and brushing those on the right…. Well, that doesn’t really happen. And as for brushing any of the molars…

We changed dentist a few years ago and he suggested quarterly visits in order to keep on top of the plaque. He also recommended that Harry brush with a high fluoride toothpaste for extra protection. Colgate’s Duraphat 5000 is a prescription-only toothpaste for those aged 16 and over. Our dentist suggested that Harry rinse sparingly in order to retain some of the sodium fluoride around his teeth. Fortunately Harry has never really mastered the rinse-and-spit so this technique works quite well. So far he has only had to have one filling.

Today was Harry’s first visit to a new dentist who has taken over the practice. I made sure that the two of them were introduced properly and gave Harry the opportunity to shake hands – he likes these small formalities. Fortunately, our new dentist is very approachable, smiles a lot and engaged with Harry quite quickly. He was clear in his explanations of what he intended to do during the appointment and what he expected of Harry. Such seemingly inconsequential actions all help to put Harry at his ease and he soon relaxed into the “Big black chair – like Mastermind”!

Harry has developed his own way of dealing with dentists and it involves opening his mouth as little as possible. Quite how dentists manage to see inside his mouth, let alone do any work, is nothing short of miraculous.

On this occasion the dentist declared himself pleased with Harry’s brushing. So much so that there was no extra cleaning to do. He said that much of the absence of plaque was probably due to a balanced diet. And as a bonus, Harry can now revert to bi-annual visits. Quite a result.

 

All smiles after the dentist gives Harry the all-clear