In my last blogpost on the Get Maisie Home campaign, I
outlined the plans that me (with my Justice Together hat on), Sally (Maisie’s
Mum) and Gill (Sally’s friend and supporter) had put together to work towards
getting a package of care in place for Maisie when she returns home. These included:
- Accessing copies of relevant documentation that could help to build the case for special provision
- Ensuring that an Education, Health and Care (EHC) needs assessment was started
- Securing a Child in Need assessment
- Putting in place provision to meet Maisie’s immediate needs upon her release from hospital
- Work on the core difficulties at the heart of autism
- Promoting positive emotional wellbeing and mental health; ensuring there is no relapse (Lifespan service, Tavistock Clinic)
Those last two kind of go hand in hand as work on certain
difficulties at the heart of autism will significantly contribute to Maisie’s
emotional wellbeing and resilience.
Our next step was to try to meet the Commissioner for
children’s mental health. Turns out he
is also the Commissioner for young people and adults’ mental health as well as
Commissioner for a whole host of other vulnerable peeps. What a huge agenda…..wouldn’t have his job
for a gold clock.
We met with him yesterday morning and to be honest, I am a)
gobsmacked and b) absolutely buzzing from the response we got from him. He agreed, without batting an eyelid, to
commission the input from the Tavistock Clinic.
That’s likely to be 3 x 6 weeks of input at over £3K a throw. The Psychologist from CAMHS will be doing the
‘external funding request’. Don’t mind
if I do.
Sally talked about the problems Maisie has sleeping……she can
be up in the middle of the night and this is when self-harming can sometimes
take place. We explored options to address this and agreement was given in
principle for a personal budget for a care worker in the home 2 or 3 nights a
week. A personal budget. Just like that. Some of you who regularly follow my blog will
know of the hoops we are still jumping through in Oldham to get a personal
budget (via the continuing care process) for two of the students at Bright
Futures School. Leap-frogged. Just like
that.
Sally raised her concern about what might happen if Maisie
reaches crisis again. Hopefully that
won’t happen if the right services are in place, but it was useful to cover
that base, just in case. A fast track
system will be put in place. No police,
no A & E. Immediate support from the
new 24/7 Crisis Intervention Team. More detail needed but a good start.
We discussed that it may well take a while for the EHC plan
to be implemented (it isn’t even drawn up yet) and touched on the possibility
of some emergency outreach support being put in place for Maisie whilst she is
at home so that she has positive activities to give her structure and
enjoyment. Though we didn’t go into
detail, we did mention the absence of a Child in Need assessment (which may
well cover this type of support). I got
the impression that the Commissioner quickly saw the rationale for reminding
his social care colleagues of their duty of care towards Maisie (a problem
shared is a financial burden halved).
Afterwards I was reflecting on why it might be that this meeting
had gone so well. Possible contributory
factors:
1. Maisie’s Mum Sally has been extremely proactive in
campaigning around Maisie’s situation.
She’s been on telly and in the papers locally and nationally as well as
keeping up the momentum around the petition to reinstate specialist CAMHS
services in her home town and ensuring that Maisie’s story is highlighted on
social media.
2. I think it was clear to the Commissioner that we knew our
onions
(in terms of rights, entitlements and basics of the law relating to
these) and that Sally wasn’t going to be fobbed off with anything less than she
and Maisie deserved. We didn’t get
anywhere near mentioning Ombudsmen, judicial reviews or further press coverage
(no need for the nuclear option, thankfully) but I think he knew Sally wouldn’t
hesitate if necessary and that she would be well supported if she chose to go
there.
3. It’s helpful to have a mindset of ‘making friends’ with
people who are decision-makers (even if you don’t like them!) and seeking to
build consensus around needs and provision.
Tread carefully and diplomatically and leave the nuclear option to the
absolute last resort.
So my take home messages to anyone in a similar position:
tool up.
Tool up with knowledge (this
is a great place to start for an overview of the rights and entitlements of
disabled children, adults and their families) and tool up with people who can
support you and who have access to further specialist knowledge and networks
(some of us have come together to try to provide access to this kind of support
via Justice Together – drop us a line, we’ll see if we can help).
Find a way to place the ball firmly back in the court of the
service providers and Commissioners.
For Sally and Maisie, this is being achieved via the EHC
Plan (the statutory framework that places duties on the service providers)
together with the indirect pressure brought by the high local profile of Sally’s
campaign……..and also possibly that slightly intimidating link to those feisty
women from Justice Together J
.
As we were about to leave, the Commissioner said to me casually, ‘what
was your name again?’ and scribbled it down on his pad.
Waitrose café for us for meeting post
mortem. University of google for the
Commissioner.
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