Saturday, 2 May 2015

Get Maisie home

Maisie is a 13 year old girl from Hull.  She has recently been diagnosed with autism and has been struggling with self- harming.  She is currently in a children's hospital in Bury - over 100 miles away from her family - because there are no longer any inpatient children/young adult facilities in Hull.

This is causing a terrible strain on Maisie and on her family. The local children on her ward get daily visits which is very difficult for Maisie to see. She feels lonely and isolated on top of her other problems which need care and treatment.
I first met Sally, Maisie’s Mum, and her friend and supporter, Gill, at a meeting in Leeds between the NAS, representatives of Justice Together and some parents of young people who have been detained against their wishes.  Thomas Rawnsley’s Mum Paula was also attending to seek help from the NAS in her campaign to get justice for Thomas, who died in state care 3 months ago.
It was a productive meeting with lots of experiences shared and offers of help from the NAS to parents seeking support in their respective campaigns.
I kept in touch with Sally and Gill after the meeting as we had decided to work together on a plan to take action to help get Maisie home by using Sally’s parental rights and entitlements to firmly put the ball back in the court of the services and organisations who should have supported Maisie in the first place to prevent her tipping over into crisis.  We identified the services/provision that should have been in place for Maisie.  I was acting on behalf of Justice Together (JT) - seeking to add JT knowledge and experience to the excellent campaigning already done by Sally, Gill and Get Maisie Home supporters.
The over-arching entitlement that we identified was an Education, Health and Care needs assessment for Maisie.  The main focus would be on the educational placement but part of the EHC assessment process should also include a social care assessment.  Then there was the issue of what health provision should be in place. 
With Sally’s consent, I am listing below what we have done so far so that it provides a possible ‘template for action’ for anyone else whose child is ever in a similar situation.
Copies of relevant documentation
Sally made what’s called ‘Subject Access Requests’ for all the documentation relating to Maisie from hospitals and health and local authorities involved in her care.  We did this so that we know exactly what has been said by whom and when about Maisie’s care: it may be that some of what’s contained in hospital and health/local authority records and emails will be helpful in making the case for Maisie to have certain specialised provision.
The EHC needs assessment
We noted that careful assimilation of clear evidence of need is crucial for this assessment.  We looked at some example EHC forms and talked about Sally working closely with the school SENCo to make sure that a) the SENCo calls for reports from all the relevant professionals who have been involved with Maisie and b) we can ensure that the wording of the report and the way that Maisie’s needs are described matches the provision that Sally wants for her.
Child in Need assessment (social care)
Sally has sent an email to the Manager of the Children with Disabilities Team asking for a Child in Need assessment of Maisie under S17 of the Children Act.  We noted that as of April 2014, this assessment should be done using a system called the Resource Allocation System (RAS) and it should identify both what Maisie needs in terms of support to take part in community-based activities and the fact that Sally may need some respite time when she can have a break from her caring responsibilities.  We looked at an example RAS assessment form and noted that the way it describes young people’s potential difficulties and challenges is more geared towards those with learning disability (LD) than it is towards those with no LD who can often have different, but equally severe challenges.  Maisie does not have LD, so we talked about how to make sure the severity of her challenges are accurately represented.
The outcome of the RAS should be either direct payments or an individual budget. 
We noted that in Sally’s local authority, the children’s social care web site page was very clearly trying to steer parents towards a CAF assessment in the first instance.  A CAF assessment is where all professionals involved with the young person and family meet together to troubleshoot problems and identify solutions.  We noted that a CAF has no ‘legal teeth’ and does not result in any kind of budget for the family whereas a Child in Need assessment places a statutory duty on children’s social care to make sure all needs are met and to provide the necessary resources (budget) to meet those needs.  We resolved that if social care tried to move Sally away from a Child in Need assessment towards a CAF assessment, Sally would assert Maisie’s statutory right as a disabled child to have a Child in Need assessment.  We noted that this right can be appealed to the Ombudsman or via judicial review, if necessary.   
Transition from hospital to home
We talked about a phased transition from hospital for Maisie with a clear plan for key support services to be in place – this would include a) initially time at home where she can hang out and chill but time that also has fun activities structured into it so that she is distracted from thinking back to her negative experiences and is able to focus on present, positive experiences (e.g. she is good at and enjoys dance, so that might be something that can be planned in) then b) some outreach provision in the home from a potential school that Sally has identified then c) hopefully transition to a full time placement at the identified school (this needs to go at Maisie’s pace).  We noted that work done around Maisie’s mental and emotional wellbeing also needs to take place during this time (see further, below).
We noted the possibility of an autism service dog to give Maisie an uncomplicated ‘friendship’ as well as giving her some responsibility and providing positive experiences for her.
We emphasised that it will be very important to reduce demands on and expectations of Maisie whilst still giving her structure and positive experiences.
Work on the core difficulties at the heart of autism
This would include rigidity, poor emotional regulation and resilience, poor joint engagement, difficulties with perspective-taking leading to difficulties understanding others.
We talked about the possibility of including some RDI in Maisie’s educational package to help her work on flexibility, emotional regulation, anxiety, and the social communication competencies she needs to make and maintain friendships and relationships.  More about RDI here.
I undertook to send Sally an anonymised RDI assessment report that was done for another child so that she could get an idea of what such an assessment looks at and how it might help to make the case for specialised work on the difficulties at the heart of autism as a key part of Maisie’s package of care.
In RDI, there is an adult ‘guide’ (parent or teaching staff) who works on a 1-1 basis with the young person using the relationship to work on those core difficulties at the heart of autism (flexibility, emotional regulation, managing uncertainty and change etc). 
In my view, it would be possible to build this into an educational package both at school (eg 1 hour per day RDI activity with a keyworker who is trained and supervised by an external RDI Consultant) and at home where parents act as ‘mindful guides’ supervised by an external RDI Consultant. 
Emotional wellbeing & mental health
We noted that CAMHS locally have been unable to meet Maisie’s needs and that the secure unit she is currently in don’t seem to be working on Maisie’s emotional and mental health either. 
We know that Maisie’s CCG (Clinical Commissioning Group) actually have a statutory responsibility to meet her needs and so if they can’t meet them locally, they need to refer Maisie to a Tier 3 specialist mental health service that can meet her needs.
We have arranged to meet with the Commissioner responsible for children’s mental health to point out that Maisie’s complex needs are putting her at risk (she is in danger of self-harming) and that the CCG (as part of the local children’s safeguarding board) have a statutory duty to safeguard her.  We will then propose working together on implementing the package that we have identified.
There is a service for young people with autism and mental health issues provided by the Tavistock Clinic, called ‘Lifespan’.
They offer consultation to professionals working with young people so this might be a way to get the necessary expertise locally, with supervision from experts at a distance.  We noted that this service offers RDI, so it would dovetail with any such provision that was in place at school and at home.  The CCG would have to buy in Lifespan’s consultancy service but given Maisie’s needs we think it would be possible to make the case for this.
We noted that it is crucial that this aspect of Maisie’s difficulties is addressed in the EHC Plan in the education section as this is a significant contributory factor to her difficulties accessing the curriculum, as well as having a good quality of life.
So, those are our plans.  The tricky part now is getting all this in place so that when Maisie comes out of hospital there is good therapeutic care in place to prevent any possible relapse and to enable Maisie and her family to access the quality of life they deserve.

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