It Must Be Mum – Part 6

…And the crippling practice of the Local Authority Staff begins.

Earlier parts of the book can be found here.  Peter (now age 10) was admitted to a Tier 4 CAMHS unit 150 miles away from home a few weeks earlier with, among other things, ‘signs of school related trauma’.  He had previously been in mainstream education with no additional support but we had now been told that he needed a specialist residential school.

Chapter 4 Children Don’t Come in Three Parts

At the first CPA (hospital multi agency meeting) meeting, six weeks after his admission, I set about trying to find a school for Peter.  I dropped Lily off at her school, turned on my computer and sat crying, making lists of schools from various searches and visiting their websites.

Having practically never cried in front of another person my entire life, I now seemed to be leaking tears randomly and without warning, on a frequent basis.  Surprising many and embarrassing some.  I had coined the phrase “Don’t worry I won’t flood” which helped me to snap out of it, acknowledge what was going on and stop the poor witness from scrabbling around for tissues.  Random and uncontrolled crying continued for many weeks.

It’s hard to describe, I was not depressed at all and not clinically anxious either.  I was exhausted beyond description, angry beyond words and very, very stressed.  The disbelief I felt was overwhelming at times.  I think I was in shock.  I considered it to be a normal response to a horribly difficult situation.  This acute episode of Peter’s had been going on for about 4 months by now.  It had come at the tail end of 3 very difficult years of trying to secure the minor, yet essential, adaptations necessary for Peter to access school life.  I felt that, despite everything, I had failed to protect him.

So back to the schools.  Almost all that I found were for children with far lower academic ability than Peter.  There were some for high functioning children but they were either day schools or miles away from home or both.  Most talked about children who had had ‘multiple exclusions’ from schools and one even had detention in their timetable.  It was soul destroying.  None of them would work for Peter.  I asked someone from SEN services at the Local Authority for help to find a school.  Their reply?

There aren’t any (schools meeting the criteria set for Peter) included in the ‘local offer’[1] as there aren’t any in (our county).”  Oh right.  What?

“The only thing we can suggest is completing a search on Google for specialist ASD residential placements (thanks for that) as we do not keep a list of these providers.”   Well the Local Authority should hold a list.  They are legally obliged to I believe (see footnote 1).  Staff there must know about them; they have children placed at some of them!

“However the Local Authority , when presented with the educational/social care recommendations (not health then?), will complete a thorough placement search and will identify suitable providers.”  Cue the first of many brain implosions.  Let me spell it out.  To be presented with recommendations, you first need to commission an assessment.  Remember, the hospital ones don’t count.  Assessments were commissioned but, it seems, wouldn’t be carried out because he was in hospital ‘out of area’.  So there was not going to be a report or any recommendations.  A placement search needed to happen and a school needed to be found for a safe discharge to be possible.

This did not improve my delicate state in any way.  Peter was going to be discharged soon after the 5th May.  Six weeks.  Tick tock tick tock.  I knew that a break in provision could set Peter back and I was really scared that, if he went back into his crisis state, his chances of a decent recovery would be slim.

For the record, a ‘thorough placement search’, or help of any kind, other than variants on ‘use the internet’, never happened.  Finding a school depended largely on tenacity (and even I was running out of this), luck and requests for suggestions placed on social media.

It felt as though every ounce of responsibility was placed onto me; to find schools and to travel miles to visit them; to ask the right questions and not get caught up in the ‘sales’ hype; to mitigate for my own desperate need to believe it would be ‘just right’ for Peter, but at the same time not wanting to believe it would really happen; to liaise, see if there were places, to send information, to make sure that it was right for Peter.  I really had no idea what to ask, or how to work out what was right.

I didn’t realise that these schools might lie and fraudulently represent their achievements.  One self proclaimed recently ‘outstanding’ school turned out to have been judged inadequate for care:  twice in the previous 12 months.  The only way to find this out was a search of their local newspapers and tip offs on social media.  Peter was very nearly placed there at one point.  Two years on and this school is still ‘inadequate’…. yet there are still children placed there.

By now I was in a state of permanent fear.  It had occurred to me that he would be in school for 6 hours per day – but in care for 18.  I had obviously failed at managing to secure appropriate support for the school bit in the past and I had no idea what ‘good care’ necessitated for Peter.  His needs had altered dramatically and were still changing.  What does good care look like in a residential school for children with High Functioning ASD?  How was I supposed to find something when I didn’t know what it looked like?

I felt utterly frantic.  Peter’s home visit at Easter had demonstrated very clearly that he wouldn’t manage at home just yet.  At one point, during one of his many dissociated states that week, Lily shouted at him through tears of despair “You’re worse than ever”.  In three weeks his discharge meeting was planned.  Peter couldn’t cope, Lily couldn’t cope.  No assessments were planned.  No school had been found.  There were no plans to actually resolve any of these issues.

I understood completely that he couldn’t stay in hospital if there was no medical need but what if he was discharged and then deteriorated?  I was terrified that he would never fully recover or be able to attend any school again.

The 5th of May and the date of the 2nd CPA (hospital multi agency meeting)  arrived.  The week before the meeting, two teachers from the Local Authority visited Peter in hospital.  A social worker that had nothing to do with our case before or after (but did have a relative nice and handy for a visit, while she was in the location of the hospital) came to the 2nd CPA.  A lot of effort went into explaining to this social worker why Peter needed what he needed and she seemed to get it….. which would have been helpful if she had had anything to do with our case.

Without warning and in the middle of the CPA meeting, the social worker announced that there was a ‘restricted file on mum’ in the social care archive.  My head started to spin again and that fog reappeared.

How on earth am I supposed to be an equal partner in contributing to the plans for Peter’s care, when I am constantly being derailed before and during key meetings?  I had no idea what she was talking about and neither did she.  The information was left hanging in the air and the opportunity for all the professionals in the room to reach their own fantasy conclusions about my past remained.  I realised during my drive home, that the file she was referring to would have been created as standard procedure when I was a foster carer some years earlier.  What a difference it would have made if that had been explained during the meeting.

No discharge plans could be made during this first discharge CPA.   The Local Authority had made practically no progress.  There were no plans for the Local Authority to make any progress until Peter was home.  But without plans he was unable to return home.  Stalemate.  A date for an early 3rd CPA, a second discharge CPA, in 5 weeks time, was made and some conditions stipulated by his Consultant.   Peter was devastated.  Lily was devastated.  I had little confidence that anything would be achieved in the next 5 weeks; I was becoming less naive as time went on.

After a lot of deliberation and soul searching, I contacted an educational lawyer.  I asked her to see if she could gain some clarification and movement from the Local Authority.  She wrote to them.  A few of the mixed messages received via various routes over this period are as follows:

27th April

we have an EP (Educational Psychologist) starting on 2nd May and his first assessment is to be your son – we can let you know the actual date once he is in post.”  Very late and I’m worried about how this will fit in with the timescale for discharge but progress all the same.

11th May

With regards to Educational Psychology (EP) involvement, our plan is to carry out an assessment once Peter is back in (the county).”  Hang on a minute…… what about the one at hospital in early May?  I wondered if the SEN Manager’s head was spinning too, with all of this indecision which presumably was the responsibility of some other department within the LA.

“We hope to have a plan in place by June 1st 2015 ready for Peter’s discharge on 11th June”.  Hmmm. “Hope to?”  Ok.

Then, later, to clarify: ‘This simply means we are working together to formulate a plan of action for Peter’s discharge and not an Education, Health and Care Plan’.  Speechless.

And then the old chestnut again……

The Local Authority will be issuing an EHC Plan when all of the relevant reports are received

Just to be clear, it was NOT POSSIBLE for the reports to be received as there was no date for the assessments to be carried out.  Because Peter wasn’t in their locality.  Because he was in hospital.  Because he couldn’t be in our locality until a plan was in place that included residential provision.  Was it me?  I really couldn’t fathom why doing the ‘right thing’ was so hard to do. 

If I were to be skeptical, then I might say that the delay was tactical and that the tactics served a few purposes for the Local Authority.  It could be that they are so overwhelmed with work, that the opportunity to delay some of it is appealing.  Of course this doesn’t change anything in the long term and is a bit of a false economy.  If they thought it would make their workload lighter, it wouldn’t of course, their workload was the same; just rearranged.  Another reason for delaying might be cost.  The LA have saved themselves a good few months of school fees which probably amounts to thousands of pounds.  Of course, in real terms, this cost was simply transferred to the NHS who footed the bill for the extra hospital stay and aftercare instead.  Maybe they thought his level of need would reduce if they left him stressed for longer.  Since this strategy had been tried for four years now and each year his need had increased as a result, such an approach would be especially erroneous.

From our perspective, the delay was toxic.  One of the key difficulties I had, was that I couldn’t appeal against the fact that something that hadn’t been produced.  There hadn’t been a refusal to carry out an EHC assessment.  If there had then I could have appealed the decision.  They had agreed to assess but then not carried out the assessments.  It turned out that the assessments were delayed on the grounds that Peter was ‘out of county’.  As no-one had told me this though so I was left confused and angry about why nothing was happening.

Once an EHC Plan was written, then we could either 1) move forward or 2) appeal the contents and then move forward.  Without an assessment and subsequently an EHC Plan, I couldn’t see how Peter come home.  He needed a school placement organised before he could be discharged.

My only options were to use the Education Lawyer to start legal proceedings (a judicial review([2]) or to request private assessments.  Both the cost and the stress associated with going down this path, were prohibitive.  Oh and the new SEN Code of Practice seems to have introduced a loophole[3]  that indicates that Local Authorities can refuse to accept private assessments anyway.  So it is a big risk.  But, most of all, this approach just isn’t me.  Couldn’t we just work together to do the right thing?  Why all of this passive aggressive resistance?

On the 14 May and, possibly now feeling some pressure from the hospital team, a ‘professionals meeting’ was organised by our Social Worker.  It was to be held local to home and Peter’s care coordinator made the long journey from the hospital to attend.  Our social worker fed back to me later that day.  ‘Everyone is agreement that Peter needs a residential placement, the professionals agreed to finish their reports and they would all meet again the following week but with me there this time’.  Ok.

A week later I found myself sitting in a formal meeting with representation from Education, SEN Services, Health and Social Care.  By way of an introduction, our Social Worker’s supervisor started off by saying that it had been agreed at the previous meeting that Peter needed a 52 week specialist residential placement.

Again everything went foggy.  A 52 week placement?  Our social worker didn’t tell me that.  She just said that the need for a residential placement had been agreed.  I had heard that children in 52 week placements are effectively ‘in care’[4].  I felt that there might be other implications that I didn’t know about.  The spinning was back.  52 weeks.  Really?  I kept my cool and tried not to react.

Our social worker’s manager then continued from the supervisor…… “We don’t have the evidence.  My manager is clear, we need more evidence that Peter needs a residential placement.  Do you understand?”  Eh? My head was still spinning and I said “No, not really”. 

I didn’t understand.  I really didn’t.  How can you tell me you have reached a decision about Peter’s needs and then get frustrated with me, because you don’t have the evidence you need to convince our social worker’s manager’s manager?  Her frustration rose and her response was to tell me again but with more frustration and perhaps a little louder.  “Do you understand?”  I really didn’t and all I could say, was “No, not really.  He doesn’t come in three parts” (meaning a part for health, education and social care).  She sighed and gave up for a while.  Her punchline came at the end of the meeting.

They moved on to ‘education’.  It was a meeting of contradictions.

‘Education’ were clear and quite certain that Peter’s educational needs could be met by the provision already available within the county.  Non-specialist and non-residential was implied.  I had a McEnroe moment in my head….. “You cannot be serious”!  You have just told me he needs all year round residential schooling, but that actually he doesn’t.  What?

The local Medical Education Service had assessed the situation and offered to provide Peter with three 30 minute lessons a week should there be prolonged transition between him leaving hospital and starting a residential placement.

The Educational Psychologist was very clear.  He would not be assessing Peter in his current placement.  He would assess Peter the second week he was back home, when he presumed that Peter would be in his second week at the Medical Education Service.  He wasn’t getting it was he?  Peter needed to be transitioned to a residential placement where he could continue with the input that had been started in Hospital.  He was less acute but needed the residential element, continued therapies and specialist schooling.

About an hour into the meeting I took out some photos of Peter.  Three or four taken at Christmas when he was very obviously and very visibly regressed.  Interestingly some professionals in the room actively avoided looking at them.  “This cannot happen again” I said.  Some suggestions were made.  I pointed out that they might perhaps be suggesting that we put him in a placement that is likely to fail so that we can have more ‘evidence’.  They moved on.

Thank goodness for ‘Health’.  They were clear, consistent and all agreed with each other.  They based their decisions on thorough assessments and multi-agency discussions.  Yes, thank goodness for ‘Health’.

The meeting moved on to its finale.  They ended where they began, with a Social Worker.  The one who wanted me to understand.  She was clear:

“We need to know what it is about home that is so very, very wrong.”

I was beginning to wonder if she had some learning, or communication, difficulties of her own.  This is the information they had had from the T4 consultant team:

“The admission to a Tier 4 psychiatric service is a reflection of the severity of Peter’s difficulties…… He has required intensive input…….. his progress would not be sustained within a mainstream setting…….. Peter requires the structure of a residential setting …..  The intensity and structure of these important principles cannot be replicated in a home setting.”   No matter how perfect….

A few days later it was decided that the Educational Psychologist would now be observing, (but not assessing) Peter whilst at school in hospital.

I wrote to the Local Authority SEN Manager:

“Please will you come to Peter’s next CPA meeting on the 11th June?  The decisions you are making on his behalf will have an enormous impact.  It would help me to understand your decisions if I could be assured that you were fully aware of the recommendations being made by the team at (the T4 service) and the reason for these recommendations”.  

I asked three questions.

  • Who is responsible for ignoring medical advice?
  • Who will be accountable for any harm?
  • What policy was followed when overruling medical advice?

I copied in the Director for Children’s Services.  They arranged an ‘emergency’ finance meeting a few days later.

Click here for part 7.

Screen Shot 2017-02-04 at 07.50.11.png

 

[1] Local authorities must publish a Local Offer, setting out in one place information about provision they expect to be available for children and young people in their area who have SEN.  The Local Offer must include provision in the local authority’s area. It must also include provision outside the local area that the local authority expects is likely to be used by children and young people with SEN for whom they are responsible.   SEN Code of Practice 2015, DfE, paragraph 4.4.

[2] Judicial review is a type of court proceeding in which a judge reviews the lawfulness of a decision or action made by a public body.

[3] SEN Code of Practice 2015, DfE, 9.49 “In seeking advice and information, the local authority should consider with professionals what advice they can contribute…Advice and information must be sought as follows… bullet point 8……..Advice and information from any person requested by the child’s parent or young person, where the local authority considers it reasonable to do so.”  It seems that information must be sought… unless the LA thinks it is unreasonable.

[4] Section 20 of the Children Act 1989 – Voluntary Care

Under Section 20 of the Act, the local authority has a duty to provide accommodation for ‘children in need’.  The parent retains full parental responsibility.

 

Advertisements

5 thoughts on “It Must Be Mum – Part 6

  1. I seriously struggled to read all of this post, but not because of how it is written… purely because I have no idea how you managed to live through all of this. My brain most definitely would have imploded and I feel sure I’d have been left with severe mental health issues of my own. I can only hope you had some good local support :/ xx

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s