Friday, 8 July 2016

A little bit of hope

Last night at 10.30pm after another day of no news from the Council or the CCG but with lots of help and support from everyone online, I got the following email from the CCG. The tone reflects what I perceive to be the joint authorities irritation with our persistence. I reproduce it here in it's entirety having removed the address. 


An update on XXXX XXXX.

Shropshire Council and the Clinical Commissioning Group have reached an agreement in principle regarding XXXX XXXX.  In order for this to be implemented, legalities need to be confirmed by both parties, along with the landlord, Severnside Housing.  Shropshire Council and the Clinical Commissioning Group will determine a timeline of actions required, and will update you tomorrow regarding this.  As soon as all legalities have been confirmed, and all necessary work completed to ensure the property is safe and suitable for Emily’s habitation, keys will be provided to the CCG for distribution.

I'm interested in the timeline they speak of. I hope it will be one which doesn't delay any further and can be implemented immediately. Yesterday I emailed both authorities, pointing out a best interests meeting could remove any more blocks to Emily's care pathway.

In the absence of any information but aware of the leaving day having been passed, Emily has naturally decided she's coming home. 

This can't happen. Emily is being told this today and it's too dangerous for me to be there when they tell her this. It's too dangerous because Emily's anxieties are so high now that she is displaying behaviours that challenge again. I want to be there I want to make sure that this is explained to Emily in a way that assures her that something which she can't help, is not her fault. No one of this is her fault. But she'll pay the price of it everyday of her life.

When Emily moves she'll have a care package of 3-1. This is a 24 hr care package. I was that care package for 15 years. It's not that we won't let Emily come home, it's that Emily can't come home because she needs much more than any one one person can give.

I've been told online several times that I'm a bad mother. That I abandoned my child and that I'm abandoning her again now.

That's ok, people will comment and make judgements and assumptions based on things they can never understand. That's human nature.

There is nothing that anyone can ever say to me about Emily leaving, that is ever as bad as what I think about that. Judgemental people should rest assured that I have a troll permanently embedded in my brain, reminding me.

I know that i never wanted to be the 80 year old mother of a 50 year old learning disabled child who then loses everything when their parent dies. Who has been "kept safe" but then has to adjust to independent living when everything they have ever known collapses around them.

I made that determination when Emily was diagnosed at 3 years old. I knew her life would never be easy. I knew the world mocks and laughs and latterly has become hateful towards people like Emily.

I learnt that everything the rest of us take for granted would not be granted to Emily without a fight. Education, accommodation, health care, justice and freedoms are not routinely positively experienced by learning disabled people. 

Until the system extends more than a grudging hand of assistance, the experience of Learning Disabled people and those of us who love them, far more than can ever be expressed in words, will remain the same.

The easiest part of this transition should have been finding the house. It will be the second most traumatic move of Emily's life.

I'll leave it to the words of one of the finest people I know. Mark Neary. His blog is a masterclass in articulate determination but it was a tweet to me yesterday which sums it up best

 " So offensive that an LD person's life has to be remoulded to fit bureaucratic shite."

Sunday, 3 July 2016

Critical need, demanding help.

19 days ago, after yet another phone call from the Housing officer at Shropshire Council,  that left me with no clear picture of what was happening and with no one at that point from Adult Social care willing to engage directly with me, I recorded a message for Shropshire Council and tweeted it to them.

As you can hear, I'm frantic. That's what the fear of Emily being placed in a psychiatric hospital because she will otherwise be homeless, will do to a person.

If you’ve been keeping up with the events of the past few weeks you’ll know that it’s been quite the roller coaster in terms of the fact that the fight is ongoing because Emily still needs a home.

As the CCG and Shropshire Council battle it out, we’ve embarked on yet another weekend with no more news as to whether Emily will have the home she needs so badly.

The appliances we’ve bought for her are arriving here today because we’ve been told by Shropshire Council, that until the lease is signed the Housing association can’t release the keys. This is totally understandable and underlines once again, that with only a few days left until Emily is homeless, the lease being signed is crucial.

Last Monday it was decided that the CCG should sign the lease and sublet it to the Care provider. With that in mind the lease documents were forwarded to the CCG and the Care provider whose legal teams could then peruse them, again understandably.

On Thursday with still no news, I got call from the regional operations manager of the care provider, telling me that the documents had arrived, however it was the lease between the housing association and Shropshire Council, not the tenancy contract so therefore there would have to be an additional wait. 

She was really kind. But it was yet another delay.

The furniture was supposed to be delivered to the property on Friday. DFS have been extraordinarily helpful, kind and understanding in all this. They attempted to deliver the furniture on Monday but as there were no keys, they had to leave. They were very kind and offered to come back later the same day after making all the other deliveries. 

Gary and Kay from DFS wishing Emily luck

On Thursday when I heard of the latest delay I phoned them and they patiently unloaded the furniture from the delivery van to await further instruction.

The woman who phoned me yesterday encapsulated all of my feelings on this in her reply to my apologies. “Don’t worry” she said “We all have children”

On Thursday evening, after everyone had left for the day we had a second email reply from Shropshire Council. 
It was written by the Head of Service : Improvement and Efficiency. 
It detailed several things. It also referenced how I have been critical and demanding.

"I am responding to your email of Monday morning as Andy Begley is out of the office.
We have been asked to write to you by the CCG in order to explain the background and current position regarding XXXXXXXX Road. We have also seen the email you sent on Monday  morning and want to respond to both at the same time. Please be assured that despite your criticisms and demands of the Council we are working with the CCG to resolve the outstanding issues explained below with a view to facilitating Emily’s move in due course."

Yes oddly I am being critical and demanding. Because it feels that no matter how many times I keep reminding everyone of their responsibilities to Emily they don't seem able to hear me.

We are Emily’s parents but actually we have no responsibility under law for Emily. No adult in this country is responsible for another adult, even if they’re married to them. We're doing this because we love her and because if we weren't doing it, who would?

Shropshire Council are required to be co-operative and to work in partnership with CCG’s. They should have foreseen this need and demand in Emily’s condition and invited the NHS to attend Emily’s 14+ transition meeting. It would have given everyone involved in her care 5 years to plan for her transition.

This would have removed entirely a critical and now urgent need to provide the housing which Emily’s complex disabilities demand.

The fact remains that for the second time, in ten working days, Emily is facing being homeless.

The email continued :

"As you will be aware, Emily is fully funded by the CCG due to her continuing healthcare needs.  This means that Shropshire Council is unable to provide care and support (including accommodation) for Emily. If we did so we would be acting unlawfully. Nevertheless we work very closely with the CCG on a wide range of issues and where we can we will support each other on projects."

The lease could be signed by Shropshire Council, her rent will be paid for by Housing Benefit and the shortfall between what they feel she will realise in rent and what they can award her under discretionary powers, can be resolved. There is a wealth of medical evidence with can support this.

There can be no further extensions by the school to Emily’s stay. They have extended this twice now. CCG are funding a 3-1, 24 hr care package because that's what Emily needs and why Emily can't come home. A simply signature by Shropshire Council could resolve this. It could have been done 19 days ago.

I return to the email from Shropshire Council :

"Please understand that we were not obliged to do this but agreed to do so in the spirit of co-operation with the CCG and because we recognised that Emily had a pressing need for alternative accommodation that we could help with. It is therefore disappointing to keep reading that we are delaying the move."

Emily can’t be informed of any of this until the property is secured. Then and only then can we utilise social stories, start introductory visits and make this crucial and difficult transition easier for her. As it is she waits and worries.

As she expressed to her carers in a phrase she used, but didn’t fully understand, ten days ago “What is the plan?”

We are acutely aware that whilst this is a process, further complicated and delayed by legality, the following paragraph gave us something new. 
Additional fear. 
I've blanked out the name of the care provider for Emily's security:

"We need to seek approval from Severnside before anything can proceed and we certainly cannot release the keys (even if we had them – they are still held by Severnside) until it has been agreed between Shropshire Council, the CCG and XXXXXXX  who is responsible for what.  If, for example, either the CCG or XXXXXXXX did not agree with the conditions laid down in the agreement, it may be that this proposal cannot go ahead."

I gained no comfort from the end paragraphs of the email which contained the non apology, apology "I'm sorry IF...."  :

"In an attempt to minimise confusion we have encouraged the CCG to be your main point of contact.  They have the responsibility for Emily due to her continuing healthcare needs so this made sense.  I apologise if you feel that Shropshire Council have not engaged with you directly but I can assure you we have been working extremely hard behind the scenes to ensure this situation is resolved in the best possible way for all involved."

Emily should be the only priority now not "All involved"

"I hope this statement goes someway to explaining the situation, and also reassures you that we are all working together.  We are not in a position to hand the keys over yet as the CCG and XXXXXXXXX  are still considering the situation via their legal teams.  However, I can assure you that at the point we are able to we will ensure you are updated."

And still we wait. 

I think this whole situation is best defined and described by the words of Lord Justice, Sir James Lawrence Munby, President of the Family division of the High Court of England and Wales  in his summing-up of a case in 2010

I post them here, in direct response to Ruth Houghton - Head of Service: Improvement and Efficiency and her email, which I've referenced above.

Lord Justice Munby's words should be the gold standard, which all Council's should aspire to in exercising their duty and responsibility to all their residents. 

Emily is a person, not merely a "Cost driver"

 "The Local authority is the servant of those in need of its support and assistance, not their master" Lord Justice Munby.

NB (Monday 4th July) : This morning the school phoned and told us that as Emily's anxieties are now presenting as behaviour that challenges she had to be restrained.