At a joint meeting
of the Children and Young People’s Scrutiny Panel and the
Adults & Health Scrutiny Panel, Members received a presentation
on a review of priorities for a whole of life autism strategy.
Members were asked to note the presentation and provide comments.
The presentation set out the policy context, drivers and priorities
for young adults with autism who were transitioning from children
to adults and the pathways involved in that transition from
child-orientated to adult services. It was noted that this was a
follow up to a previous look into transitions undertaken by the
Adults and Health panel last year. The presentation was introduced
by Charlotte Pomery, AD for Commissioning and Georgie
Jones-Conaghan, Joint Lead Commissioner
for Adult Learning Disability and Autism.
It was noted that an
Autism Strategy Group had been established which included a wide
array of partners and parent/carer representatives. The group had
met three times and was still developing and expanding.
Members
were advised that Autism was a life-long condition for which there
is no ‘cure’. Autism is a spectrum
condition. Which meant there are a wide range of traits
associated with autism and different levels of need. Some autistic people also had learning
disabilities, mental health issues or other conditions, meaning
people needed different levels of support.
Autism
causes difficulties with social communication and interactions, as
well as a potentially restricted and repetitive range of
behaviours, activities or interests. Autistic people are more
likely to have environmental sensitivity. This means they may be
hypersensitive or under sensitive to pain, temperature or other
aspects of their surroundings. This will vary in type and intensity
from person to person. The social model
of autism is increasingly moving away from seeing autism as a
‘disorder’ and adopting a ‘neurodiverse’ understanding that sees autism
as being different but not deficient.
Officers set out
that a whole of life strategy was being developed, which was
partially a response to increased awareness of autism, a
recognition of that pathways for autistic people were in some cases
inadequate as well as a recognition of the need to listen to the
voice of those with autism. Officers also set out that the Council
was beginning a process of co-production of services with services
users and that this had highlighted a need for change. Further
drivers of this work included the Autism Needs Assessment in 2017,
a recognition of the need for better early intervention and
prevention, as well as the SEND Joint Strategic Needs Assessment
completed in March 2020 which showed a growing prevalence of autism
in Haringey.
Some key facts and
figures:
- There are
at least 700,000 autistic people currently living in the UK, which
is around 1% of the population.
- Approximately 40% of autistic people have co-occurring learning
or intellectual disabilities 80% of autistic people, at some point
in their lives, have mental health problems such as anxiety and
depression, and the majority rate their anxiety as the number one
problem in their lives.
- Autistic
people without a learning disability are 9 times more likely to
take their own life than the general population.
- There are
under reported BAME and equalities issues for autistic people,
including a high prevalence of autism amongst trans people and some
cultures not recognising autism and having no word for it. Autism
is apparently more prevalent in males than females, but this is
likely to be due to under-reporting of girls and women and their
better ability to mask features and behaviours.
- White Hart
Lane, Tottenham Hale and Grove were identified as the wards with
the highest number of autistic children in the borough. Officers
advised that similar information was not held in relation to adults
with autism.
The following was
noted in response to the discussion on the policy context and
drivers of a Haringey whole of life autism strategy:
a.
In response to a concerns raised about
the fact that Tottenham had the highest rate of autism in the
Borough and the reasons for this, officers clarified that it was
three wards rather than the whole of Tottenham and advised that
they were looking to see whether there were any environmental
factors that could explain this. Officers advised that they were
also working on the Joint Strategic Needs Assessment to identify
the issues involved. Members were advised that there was a
correlation with a need for speech and language therapy in those
areas.
b.
In response to concerns about the Grove
and an increasing tendency to concentrate children in specialised
schools, officers advised that there were 779 young people with an
Education, Health and Care Plan who were identified as being
autistic and of these around 530 were in mainstream schools. In
contrast, there were around 240 in specialist schools of whom 80
went to the Grove. Officers clarified that these figures related to
children who were registered as Haringey residents and could attend
educational institutions both inside and outside of the
Borough.
c.
In relation to a follow-up question,
Officers advised that there were 2282 Education, Health and Care
Plans (EHCP) in the borough, which represented an 18% growth from
the previous year. One of the key things reflected in an EHCP was
autism.
d.
Officers advised that the prevalence of
autism within Haringey was broadly on trend with the rest of the
UK.
e.
Members sought clarification around what
was meant by embedding ‘neuro diversity’. In response,
officers advised that the language used was crucial with autism as
well as the need to adopt an inclusive approach. Overall, the
approach involved consulting and listening to patients and
providing a person specific response.
f.
Members enquired whether there were home
school stats for children with autism. Officers advised that the
prevalence of home schooling for children in Haringey was
comparatively quite low. Officers agreed to send round the figures
for home schooling after the meeting. (Action: Nathan
Jones).
g.
In response to a question, officers
advised that information on adults with autism was much scarcer due
to the fact that EHCPs were one of the key means by which autism
was identified and pathways/responses were determined. There was no
register as such for Haringey adults with autism and Members were
advised that only clinical institutions like Maudsley Hospital would hold this information.
Officers acknowledged that one of the key outcomes in developing a
strategy was to provide better information advice and guidance that
our ability to signpost services was improved.
h.
In response to a question, officers set
out the importance of self-evaluation and the need to be driven by
the data.
Priority one of the
Autism Strategy was improving diagnostic services for autistic
children, young people and adults. The key elements of this
included:
- The
development of new pre and post diagnostic support in-borough, run
by BEH MHT.
- Children’s clinical providers had started to work together
on joint clinics across CAMHS/ autism diagnostic services. A review
of the current children’s diagnostic pathway was
underway
- Review and
emphasis based on feedback from users on importance of pre &
post diagnostic support
- Careful
planning to ensure young people transitioning will not be
disadvantaged by a children and adult diagnostic service, and
agreement locally to ensure a whole of life pathway would underpin
this.
The
following arose in response to the discussion of priority one of
the autism strategy:
- Members
sought assurances about how much work was being undertaken in
relation to hard to reach cases and in particular where English
wasn’t a first language. In response, officers acknowledged
these concerns and agreed that some consideration would be given on
how to reach hard to reach communities and what support could be
given to help them access services.
- In
response to a question, officers advised that there was a growing
body of research into the causes of autism and that clinical
knowledge was developing all of the time. It was noted that autism
is something that children could be born with and there were also a
range of environmental factors that could have an
impact.
- In
response to a question around the autism hub, officers advised that
it was primarily designed for ages 16+, however it was hoped that
it would also provide a safe space for parents and carers of
autistic children to meet and access a varied of other information
and services.
- In
response to a question around other boroughs that provided a
similar autism hub, officers advised that Kensington and Chelsea
and Westminster were in the process of implementing something
similar and that officers had spoken to their counterparts in those
boroughs.
- The Chair
raised concerns about the transition from children to adult
services and the disjointed nature of some of those services. Given
that the hub was designed for 16+, the Chair was keen to understand
what hub-type services existed for younger children and what those
pathways were for preparing for adulthood. In response, officers
acknowledged that it was more problematic for children without an
Education Health and Care Plan as there was a requirement to be
planning for adulthood from 14+ in the EHCP. Officers acknowledged
that transitions was an area where outcomes needed to be improved
and that a lot of the connection services and career guidance had
been passed back to schools which made this more
difficult.
- In
response to officers conceding that there was no equivalent hub
service for children, the Chair emphasised the ease of access
involved with having a hub as well as people knowing where to go.
In response, officers set out that a hub service was not the only
source of information, advice and guidance and that the Council
also had a local service offer which listed universal services as
well as disability specific services across the borough. Officers
also set out that schools did a huge amount of work in ensuring
people received the correct information and signposting
services.
- Members
requested that further consideration be given to what service offer
could be provided for the 14-16-year-old cohort in relation to the
autism hub and supporting the transition to adulthood. (Action: Charlotte Pomery).
Priority
two of the Autism Strategy was increasing complex care services for
autistic children, young people and adults in the community. The
key elements of this included:
- Working
with BEH to improve support for autistic people with mental health
needs
- Discharging people from hospital and avoiding admission as per
Transforming Care
- Developing
Positive Behaviour Support (PBS) local provider market.
- Developing
autism supported housing programme e.g. Linden Road, SEN
‘halls’ in borough
- Developing
new PBS LD and Autism day service at Waltheof Gardens to support carers.
- Rolling
out PBS training in schools and services in the local area and
providing a network for PBS supervisors from April
2020.
The
following arose in discussion of priority two of the autism
strategy:
- In
response to a request for clarification in relation to the
transforming care accelerator pilot proposal, officers advised that
this related to additional funding for children who were discharged
from hospital to ensure that they retained the same key worker
throughout their treatment in order to reduce instances of
readmission. In response to a follow up, Members were advised that
this was specifically related to complex care needs such as autism
and those in receipt of psychiatric care.
- In
relation to a question on the nature of SEN ‘halls’,
officers set out that this was a project being developed to provide
new supported housing at a site in Linden Road for people with
autism or who had been discharged from psychiatric care and who
were unable to live at home. The facility would be for the 16-25
age demographic and would facilitate their continued attendance at
either school or college.
- In
relation to a query about what suitable housing entailed, officers
advised that needs could vary widely across the autistic cohort but
that some level of specialist design was required. In particular,
housing design needed to have level of environmental sensitivity as
ill-considered lighting and decoration could potentially trigger
behaviour.
Priority
three of the autism strategy was enhancing crisis planning for
autistic children, young people and adults in recognition that
autistic people were over-represented in mental health services and
that without crisis planning, they could spend a long time in
psychiatric hospitals unnecessarily. The key elements of this
included:
- Crisis
management teams.
- The autism
hub aims provide low level mental health support, health and
wellbeing support and peer support which can prevent crisis in some
instances
- Holding a
register of those ‘at risk’ for both children &
adults at risk of admission
- Arrange
community (education) treatment reviews (CETR) in the community to
prevent admission with family and professionals and independent
panel of experts.
- Developing
Hazelmere respite service for young people and families at risk of
placement breakdown and/or admission
The
following arose in discussion of priority three of the autism
strategy:
- In
response to a question around providing a rapid response during a
crisis, officers advised that a recovery team provided a rapid
response as well as there being a dedicated crisis liaison service
through CAMHS.
- Members
questioned whether there was specific service offer towards looked
after children and care leavers to reflect the vulnerable nature of
this cohort and the additional duty of care owed to them by
Members, as corporate parents. The Chair questioned whether a
specific target could be put in place for care leavers to reflect
this. In response, officers acknowledged these concerns and agreed
to develop this further as part of the ongoing development of the
autism strategy work.
- Members
sought clarification around provision of services for low level
mental health and anxiety issues as well as the provision of peer
review/support services. In response, officers confirmed that the
autism hub would include access to CBT and IAPT services. The Chair
commented that this could potentially have a big impact on children
and young people in the borough.
- In
relation to a follow-up question about who was leading on the
pathway for these services, officers advised that part of the work
being undertaken in developing this strategy was around identifying
pathways and capturing where gaps existed. It was noted that the
autism strategy group were responsible for leading on the
development of the strategy and that its composition was developing
with time.
- The AD for
Commissioning agreed to come back to the Children’s Panel
with a work plan which included a potential improved offer to care
leavers as well as pathways for low level mental health support
services for children and young people, once this had been
developed. (Action:
Charlotte Pomery).
Priority
four of the autism strategy was developing stronger care and
support in the community for autistic children, young people and
adults in recognition that people with autism and their families
could benefit from a range of targeted community services. The key
elements of this included:
- Community
services such as Markfield, Kith and
Kids.
- The
learning disability (LD) and autism day service would provide care
for people with LD and autism in the community as well as providing
respite for parents and carers.
- The autism
hub would provide a place for the community to come together in a
safe and accessible environment for people with autism and their
support networks.
- The autism
Hub would also provide autism awareness training in borough to help
make Haringey more autism friendly.
The
following arose in discussion of priority four of the autism
strategy:
- Panel
Members were keen to see additional roll out of sensory services
such as colour coding of library books and book shelves in
libraries to make them more accessible. It was also commented that
navigation on the London Underground could be difficult for those
autism and that more should be done to lobby TfL to colour code
stations in a way that was autism friendly.
- In
relation to a question around best practice examples on developing
sensory approaches, officers acknowledged that there was a
significant body of work around best practice on this such as
Montessori schools.
Priority
five of the autism strategy was improving accessibility for
autistic children, young people and adults. In recognition of the
limited understanding and awareness of autism in mainstream
services including health, education and social care reducing their
ability to meet the needs of autistic residents. There was also a recognition by the autism
strategy group that autistic residents and their families
didn’t know where to go for help. The key elements of this
included:
- Improved
digital accessibility such as through Haricare, but more needed in range of different
media; documents such as Preparing for Adulthood Pathway guide very
popular.
- Driving
the health check scheme to support GP’s to identify all
patients aged 14 + with learning disabilities, to maintain a
register and offer an annual health check, including a health
action plan.
- The autism
hub aims to provide signposting, training and support in the
community to improve access to services and awareness of
autism.
- Parent
post diagnosis workshops and courses including Signet create vital
peer support groups that help families navigate
services.
The
following arose in discussion of priority five of the autism
strategy:
- Panel
Members sought clarification around the accessibility and
availability of information through libraries. Members also
commented that Haricare was not well
known and sought assurance about how its profile could be raised.
In response, officers emphasised the need to provide information
consistently and ensure it was widely available. There was a
recognition that people often only looked for the information when
they needed it and that it was important to make sure that
information was available in places that were
accessible.
- In
response to a question about the role of schools, officers advised
that the was a lot of information shared with schools but that it
was only as effective as the individual schools and the extent to
which they passed this information on. It was also recognised that
information tended to be increasingly online.
- In
response to a concerns about Haringey being recognised as an autism
friendly borough and the obstacles to this, officers recognised
that this was a key challenge going forwards and that there was a
focus on ensuring that the Council listened to the feedback
provided by residents and that what residents wanted was for the
information to be available locally.
Priority
six of the autism strategy is improving education, employment and
training in the community for autistic children, young people and
adults. This priority was in recognition that many children and
young people faced challenges with the education settings and
increased challenges of finding employment or training post 16. The
key elements of this included:
- Work was
underway in transitions and SEND to improve the offer and pathway
during transitions.
- Alternative Provision Review to address the gap in SEMH long
term education provision and enabling new approach to
exclusions
- SEN
commission Project Search and number of supported employment
initiatives.
- The autism
hub would provide employment and training support for people with
autism aged 16+. The hub will also employ people with autism,
providing more opportunities in Haringey.
- The
borough partnership is prioritising adult supported employment
initiatives in adults and health, this was at a scoping stage and
the intention was for this to develop at pace and grow
significantly.
The
following arose in discussion of priority six of the autism
strategy:
- Panel
Members sought clarification around the employment of people with
autism within the hub, in response officers advised that funding
existed for two roles: One team leader and one administrator role.
Officers also outlined that it was envisaged that the hub would
also include a volunteering facility for people those with
autism.
- Members
enquired about the issues faced with securing good work experience
placements and apprenticeships. It was suggested that the Council
should be playing a key role in pushing for good work experience
placements. In response, officers advised that there was a real
drive around supported employments within Adult Social Services. It
was acknowledged that there was a problem with the availability of
placements and that the Council had a role in coordinating
this.
- Members
also sought assurance about exclusions and concerns that schools
passed difficult children on to other schools. Officers advised
that a lot of work was being done around exclusions, which included
ensuring that children with undiagnosed autism were not part of an
exclusion process. Officers also set out a process of supporting a
managed move to another school if a particular child was having
problems with their current peer group.
- Officers
agreed to share figures for the number of apprenticeships and work
experience schemes in Haringey. (Action: Charlotte
Pomery).
Priority
seven of the autism strategy is developing stronger community
safety for autistic children, young people and adults. This
priority was in recognition that evidence
suggested that people with autism are over-represented in criminal
justice systems both as victims and perpetrators of crimes. There
was a lack of specialist support within the criminal justice
system.
The key
elements of this included:
- Support in schools available –but there were
questions about the effectiveness of supporting transition to
adulthood.
- Links with
community safety needed to be better established –there was
crossover with PREVENT and hate crime/ mate crime agendas where
autistic people are over-represented in case work
- Implementing the Young People at Risk Strategy with clear focus
on supporting those most vulnerable to risk
- Safeguarding in the community and making it everyone’s
business – was there a campaign needed?
The
following arose in discussion of priority seven of the autism
strategy:
- In
response to a question, members were advised that the head of the
family courts had suggested that around one third of all of the
cases related to individuals with undiagnosed mental health
conditions.
- Members
advocated the involvement of the police within the autism hub to
help police officers deal with people with autism and to improve
understanding of the condition. It was suggested that there was a
key role around training police officers and that the Borough
Commander could be invited to attend the autism hub. Officers
acknowledged this suggestion and agree to try and take this
forward. (Action: Charlotte Pomery/Georgie Jones-Conaghan).
Priority
eight of the autism strategy is empowering autistic children, young
people and adults. This priority was in recognition that the 2017
Haringey Strategic Needs Assessment highlighted that there was not
enough representation of people with autism in the designing and
commissioning of services. The following proposals were put
forward:
- The autism
strategy group includes autistic residents and parent carers to
improve representation and ownership and challenge old norms of
‘disorder’ e.g. neurodiverse.
- The
specification for the autism hub was being designed alongside a
series of community engagement sessions with autistic residents and
community groups.
- The autism
hub would work closely with be coproduced with autistic residents,
community groups and partners.
- The
primary function of the hub would be about facilitating peer
support, so autistic people could support each other and find
solutions to issues themselves or as part of a wider
community.
The
following arose in discussion of priority eight of the autism
strategy:
- Members
requested further information around the make-up of the autism
strategy group, as well as the framework that would be used to
actively engage people and encourage parents, carers and community
groups to be part of the coproduction process. (Action:
Charlotte Pomery).
- Members
advocated that the Council needed to be as visible and inclusive as
possible in terms of its communication activity to ensure that
representation of people with autism was
central to the designing and commissioning of services.
Priority
nine of the autism strategy is improving data collection for
autistic children, young people and adults. This priority was in
recognition that the 2017 Haringey Strategic Needs Assessment
highlighted that there were a number of significant gaps in the
data which make it difficult to present a comprehensive picture of
the autistic population in Haringey and their needs, which made it
harder to commission services for autistic residents in Haringey.
The following proposals were put forward:
- Trying to
embed better autism data collection in services through the autism
strategy e.g. provision of an adult diagnostic service.
- Improve
our understanding and awareness of the issues facing the local
autistic community, through community engagement.
- Improve
data collection around people with autism in Haringey, through the
autism hub.
The
following arose in discussion of priority nine of the autism
strategy:
- The Chair
set out the importance of being able to evidence how the data
collected would inform the next of strategy development. In
response officers acknowledged this concern and assured Members
that work was being undertaken to look at how information could be
shared with primary care providers. In relation to the data
gathering process, officers advised that the self-evaluation
framework was a key tool that provided annual data on how Haringey
was performing as well as the performance of other
boroughs.
- The Chair
requested that officers provide feedback to the Children and Young
People as well as the Adult and Health Panel on how they could be
involved further in the autism strategy process as it
developed. (Action:
Charlotte Pomery).
AGREED:
1.
That statistics be circulated to the
Panels on the number of children with autism who are home
schooled;
2.
That further consideration be given to
what service offer could be provided for the 14-16-year-old cohort
in relation to the autism hub and supporting the transition to
adulthood;
3.
That the Assistant Director for
Commissioning be requested to report back to the Children and Young
People’s Panel with a work plan that includes a potential
improved offer to care leavers as well as pathways for low level
mental health support services for children and young
people;
4.
That figures for the number of
apprenticeships and work experience schemes in Haringey for young
people with autism be circulated by the Assistant Director for
Commissioning to Members of the Panels;
5.
That the Police Borough Commander be
invited to attend the autism hub;
6.
That further information be circulated to
the Panels by the Assistant Director for Commissioning on the
make-up of the autism strategy group and the framework that would
be used to actively engage people and encourage parents, carers and
community groups to be part of the coproduction process;
7.
That the Assistant Director for
Commissioning provide feedback to the Children and Young
People’s and Adults and Health Scrutiny Panels on how they
could be involved further in the autism strategy process as it
developed.