Breaking new ground
Me and my son, Philip, age 19, are celebrating a victory
following a recent win at SEN Tribunal over Philip’s further education. Initially,
our local authority (LA) attempted to cease to maintain Philip’s Education,
Health and Care plan (EHCP), even though it was clear that he had not met the
outcomes in the plan. With the help of some fabulous legal peeps (solicitor James
Betts of Irwin Mitchell and barrister Steve Broach of Monckton Chambers), we
managed to persuade the LA that it would not be lawful for Philip’s EHCP to be
ceased.
Unfortunately it didn’t end there because despite Philip
clearly communicating to the LA that he felt that the impact of his autism would
mean that he would not cope at College, the LA proceeded to consult with 4
colleges. This happened whilst the LA was insisting that I was stopping Philip
from ‘having his voice heard’ (utter rubbish, of course, but don't LAs just love to trot out that old chestnut of mother-blame, *sigh*) whilst simultaneously listening to, and then
ignoring his voice themselves.
After helping the LA to understand why they should
concede on the college point, we still had to battle through subsequent
arguments against the bespoke package that Philip and I had put together.
It’s a long and complicated story that deserves (and will
get) its own blogpost, but suffice it to say that not only did we secure a
highly personalised 5 day per week package of educational activities and
learning for Philip funded by an education personal budget (EPB) - one of a
small number of packages with EPB funding arrangements in England - we also
broke new ground in Education, Health and Care (EHC) plans, with the Tribunal
Judge agreeing that social communication provision (which addresses core autism
difficulties) constitutes ‘educational provision.’
Social communication approaches and RDI
Social communication interventions are a kind of
psychosocial intervention that act to make specific alterations in a child’s
dyadic (paired) communication environment in order to improve the child’s
social communication, which includes: social reciprocity, sense of self,
cognitive flexibility/executive functioning and ability to regulate their
emotions. They are usually used to improve core autism features in pre-school
children with diagnosed autism.
Relationship Development Intervention (RDI) is a social
communication intervention that has been developed to work with older
children/young people and adults with autism, as well as with toddlers and
young children.
RDI was used with Philip both by us parents in the home
and as practice that was embedded within his school’s curriculum. Philip’s
ADOS score (which measures the severity of the autism) decreased from 19 out of
22 to 12 out of 22 following 10 years participating in RDI. He is still
autistic and still faces challenges due to his condition, but many of his
former challenges have decreased in a way that has significantly improved his
quality of life.
Findings from developmental psychology research
Research shows that in autism, mastery of the pivotal
milestone of joint attention (mastered at 9 months of age in typical
development) and its preceding milestones can be delayed or disrupted and that
this disruption has serious consequences for subsequent social and cognitive development. The consequences include: difficulties with
reciprocal social interaction; difficulties managing uncertainty and
unpredictability (which can lead to distressed behaviour); lack of
perspective-taking (leading to a focus on self and an inability to see the
‘bigger picture’); difficulties with emotional regulation (leading to distressed/‘challenging’
behaviours); impairments in episodic memory (which can lead to a lack of
resilience, low levels of self-actualisation and low self-esteem).
NHS NICE guidelines recommend social communication
approaches for autism
NICE clinical guidelines on ‘Autism spectrum disorder in
under 19’s: support and management’ (GG 170) recommend as a key priority for
implementation that providers of services consider a specific social
communication intervention for the core features of autism in children and
young people that includes play and activity based strategies with parents,
carers and teachers to increase joint attention, joint engagement and
reciprocal communication in the child or young person. NICE recommends that
strategies should:
- Be adjusted to the child or young person’s developmental level
- Aim to increase the parents’, carers’, teachers’ or peers’ understanding of, and sensitivity and responsiveness to, the child or young person’s patterns of communication and interaction
- Include techniques of therapist modelling and video interaction feedback
- Include techniques to expand the child or young person’s communication, interactive play/engagement and social routines
RDI is one of a handful of approaches that meets the
above criteria.
The implications of Philip’s Tribunal judgement
Philip’s victory has important implications not just for
him, but also for other young people with autism who will struggle to attend
college and other traditional post-19 provision but still need to access
education and training to help them to prepare for the world of work, as it
adds to the small number of examples of successful proposals of this type that
have been funded by an education personal budget.
More crucially, it sets a precedent for social
communication provision (in Philip’s case, RDI) to be mainstreamed in EHC
plans.
Philip’s feedback on RDI
After 'graduating' from Bright Futures School, Philip
decided he didn't want to go to college but did want to continue to learn what
he needed to make him work-ready. Philip had taken part in Relationship
Development Intervention (RDI) both with his parents at home and during his
time at Bright Futures School. Philip shares that, ‘RDI has helped me to
understand other peoples’ non-verbal communication (facial expression, prosody
and gesture) in a way that helps me to better understand what they mean e.g.
sometimes people mean the opposite of the words they are saying……but it’s hard
to decode that unless you also understand what their face and tone of voice is
telling you. Because I have learned to do that in a very natural way over many
years (doing fun stuff with my parents like baking, playing games), I don’t
have to think about it – it comes automatically so it’s not a struggle for me.’
Philip goes on to explain that he also feels ‘that RDI
has helped me to see other peoples’ points of view better and to use the
thinking of people that I trust (like my Mum and school staff) to decide what
to do when I feel uncertain about something, as well as helping me to pay more
attention to what other people are thinking and feeling generally.’ Philip is
writing in more detail about his experiences with RDI on a blog of his own that
he is currently creating.
Despite his good progress in these areas, Philip was
still struggling to regulate his emotions and finds it extremely difficult to
break out of cycles of negative thinking. This was one of the reasons for
continuing to include RDI in his bespoke package of educational provision.
The package includes: further learning in the areas of
maths, English and IT; work skills, money management and employability short
courses (ASDAN); volunteering at a community café, the local foodbank and
(hopefully but yet tbc) as a porter at the local hospital; litter-picking;
cooking and baking; independent travel; puppet-making; and doing voice-overs
for a local radio station.
Philip will be supported on a 1-1 basis by Learning
Mentors from his former school, Bright
Futures School (BFS) – this is crucial to success as they are familiar
adults with whom he has excellent trusting relationships and who are all
trained in RDI. As the budget holder, I am commissioning this input from BFS
and the school is employing another Learning Mentor (LM) to backfill the LMs
who are freed up to work with Philip.
The social communication/RDI work will be delivered
during the baking/cooking sessions; the puppet-making and the independent
travel sessions, where the activity is used as the vehicle for the
interpersonal engagement that leads to mastery of developmental milestones. The
litter-picking, volunteering at the foodbank, community café and hospital
portering and the radio work are less structured education and training
opportunities which involve much more social unpredictability. They therefore
also double up as additional opportunities for the adult guide (LM) to support
Philip to review real life problems and challenges, identify changes in his
emotional state and role play different possible responses to challenges.
The evidence that was accumulated in order to make the
case for the bespoke provision
I commissioned reports from our family RDI Consultant and
from an Educational Psychologist and used the information in these reports to combine the needs that were identified separately in the
EHCP and in the EP report. The
table in this link represents what I considered to be the consolidated needs
that needed to be included in Section B of Philip’s EHC Plan and the provision that
was required in Section F.
One of my big bugbears with EHC plans is the way that
‘needs’ are separated from ‘provision’. In my experience, this often results in
LAs failing to ensure that there is a provision specified for each need, which
is what is required by the SEN Code of Practice. The use of a table format where
needs link directly to provision mitigates against this.
Philip has agreed to the sharing of this table. I’m not
sure that I would have had the courage to consent to all my areas of difficulty
being laid bare for public scrutiny. I have to hand it to the lad – he is
totally determined to put out there anything that could help other autistic
peeps and their families, so let’s do a Mexican wave for his courage, kindness
and tenacity.
Thank you, Philip xxx
