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What will we cover?
HPCI – who we are and what we do
Key issues
Making it work
www.hertsparentcarers.org.uk
What is HPCI? The parent carer forum for Herts.
A parent participation/involvement organisation that is run by and for parents of children with all types of SEND aged 0-25 in Herts
Our focus is children and families, not carers
“The purpose of involvement is to enable parents to participate in service planning and decision making so that services meet the needs of families with disabled children”
“If you want to know how well a pair of shoes fit you ask the person wearing them not the person who made them”
www.hertsparentcarers.org.uk
National and Local Part of a Regional and National Network of Parent
Carer Forums (NNPCF) supported by a national partner - Contact a Family. 152 forums across England with over 60,000 members
HPCI is funded by DoE and HCC.
Structure - a steering group, parent reps, parent carer network, links to parent support groups and relevant voluntary organisations.
Parent Reps are involved in Social Care, Commissioning, SEND Reforms implementation, 0-25 Integration, DSPL
www.hertsparentcarers.org.uk
History
www.HertsParentCarers.org.uk
• 2001 Parents from ASD groups in Herts meet with leader of HCC • 2002-3 Autism Scrutiny process and recommendations• 2003-8 Lack of implementation of recommendations• 2009 Parent led organisations produce Autism Report, no
progress• 2013 260 parents support call for an Autism Free School, LA
declined but agreed to Autism Education Review• 2014 All Age Autism Strategy commissioned by Health and
Wellbeing Board
Culture Change“ Where I used to live, all the professionals were trying to help me,
suggesting things I might need, talking to each other to work together. I’ve moved to Herts, and I can’t understand why it’s so different. All the professionals just seem to spend time trying to
find reasons not to help, and pass me on to someone else.”
www.hertsparentcarers.org.uk
DataAutism Incidence Rate 1 in every 100 people
2012 – in Herts 360,283 CYP aged 0-25 So 3603 of them with ASD
Only 1 need is recorded so figures don’t add upRecorded need changed to match provision designation
Therefore no idea of extent of co-morbidities National health based initiative will start to address this
from 2015No focus on outcomes, wellbeing or the wider needs of
families
www.hertsparentcarers.org.uk
Health Health Visitors – Special Needs Health Visitors
Diagnosis – not NICE compliant in Herts Valley CCG, waiting lists and lack of allocated resource
Parental skilling – not NICE compliant, no consistent co-ordinated approach anywhere else either
Shortage of Therapy services – SaLT and particularly OTs with sensory integration training
Universal Primary Health Care – few reasonable adjustments, lack of understanding of autism
Entrenched behaviours develop that result in significant health impacts and costs later
CAMHS – re-commissioning is welcome but doesn’t address preventing challenging behaviour arising, lack of understanding in
mental health professionals
www.hertsparentcarers.org.uk
Social CareRe-structure starting to improve aspects of service such as
assessmentLack of understanding of autism beginning to be addressed
Retention of social workers is an issue Impact on social care resources from education, family breakdownShort Breaks(Statutory Duty) loads of research about the benefits
for families of the right types and range of short breaksThis has begun to be addressed – issues around provider skills to
cater for autism effectively
www.hertsparentcarers.org.uk
Education
Children and Families Act 2014, Part 3.Section 19 – General Principles
“….the Local Authority must have regard to….- d) the need to support the child and his or her parent, or the
young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible
educational and other outcomes.”
www.hertsparentcarers.org.uk
EducationKey to improving outcomes and life chances for all people with autismMust have a range of flexible good quality provision available to meet
very varied needsCurrently in Herts a number of children are failed in Education as we
do not have adequate range of good provisionCost of this to the individuals, to their families and to other services
(Social Care, mental health, Adult) is enormous.Quality is patchy across all types of provision – NAS Accreditation
scheme is welcomed and must be extended but, Particular gap is for children with high levels of autism, particularly
sensory difficulties, who do not have a learning difficulty.
www.hertsparentcarers.org.uk
EducationNumerous surveys & data over the years highlighted same issues.Glenys Jones is currently reviewing provision again in Education
for DSPL with a view to improving provision and filling gaps.Focus on improving provision in mainstream schools, but Glenys
acknowledges there will always be children for whom mainstream cannot be adequately adapted, and currently we do not meet
those needs.Important that tangible development of provision for those
children comes out of Glenys’s work.
www.hertsparentcarers.org.uk
John• Diagnosed with autism at 4
• Attended mainstream primary relatively successfully – police and CS involvement due to frequent incidents of running off from home and school.
Sibling diagnosed with ADHD & autism.• Achieved well academically at primary and transitioned well to local
secondary• In year 8, transition support withdrawn, target for bullying & anxiety
increased until meltdown & violent outburst led to permanent exclusion• Spent a year in ESC, lots of intervention work, moved back to different local
mainstream secondary. Statement application turned down.• Lots of support in new school, good progress but a mishandled incident led
to another violent outburst – back to ESC permanently• Now doing half time at ESC, sitting 4 GSCE’s this year, rather than the 10 he
was expected to get in school 2 . Unsure about post 16 options.
www.hertsparentcarers.org.uk
Gareth• Diagnosed with autism at OOC CAMHS provision after displaying
challenging behaviour at 9• Three mainstream primary placements broke down, statement refused• Secondary mainstream placement broke down, statemented with EBD as
primary need, no detail about autism in statement.• EBD secondary placement broke down, not able to cope in behavioural
system of school• Given bespoke program through ESC/ EBD school, no autism provision made but 121 support – behaviour became so challenging discussion of OOC
residential placement• Parents appealed to SENDIST to get statement amended to reflect autism
needs – Connexions involvement arranged for bespoke program through Springboard (ASD specialist)
• Completed program successfully, now a student at NHC/ Springboard
www.hertsparentcarers.org.uk
Seb• Diagnosed with autism at 5
• Placement in Mainstream infant school broke down, was repeatedly excluded and spent months at home. Became withdrawn, violent and
began self harming .• Was eventually statemented and offered a place at EBD Primary school
in year 2.• Initially ok, with individualised plan
• School more rigidly enforced behaviour policy, and he began getting detentions and exclusions
• Began withdrawing again, self harming and behaviour at school worsened. Missed last few weeks of term as school agreed he was not
able to cope in school.• Currently doing half days and Deputy Head has told Mum he is “not
manageable” in their school environment due to “mental health issues”• CAMHS signed off, can’t access CDC for ADHD medication due to
challenging behaviour
www.hertsparentcarers.org.uk
Home schooled children• No clear figures, but we estimate from responses to
surveys/ membership details 80-100 families are home schooling children with ASD in Herts
• Variety of reasons, including genuine elective home education, but often
• Parents are pushed into agreeing to home education when children in mainstream become school refusers
• Many home educated children have a succession of failed mainstream &/or EBD placements
• Once children are Home Ed, they receive no additional support or therapy, no access to FSM or PP (despite new
duty under C&FA 2014)• Huge impact on family, takes resources and time – parent
can’t work, need to be able to manage child 24/7, need to be able to teach and arrange appropriate social interaction
opportunities, costly
www.hertsparentcarers.org.uk
Communication Disorders Team
Early Years service great, but can’t be accessed until diagnosed now rarely before age of 4
Advisory Teacher service smaller now than 2009 when it was felt to be understaffed
Feedback on effectiveness patchy, some parents and schools report excellent support, others say unhelpful and poor –
depends on area.
www.hertsparentcarers.org.uk
GirlsParticular issues around diagnosis and education of girls with
autismProfessionals not yet adept at identifying autism in girls
Many girls only diagnosed in puberty after presenting mental health conditions such as eating disorders, self-harming
Girls very vulnerable, high risk of sexual exploitationOften parents would like single sex schools but Girls schools
historically less skilled with autism
www.hertsparentcarers.org.uk
Making it work…Autism Board with teeth to enable the Autism Strategy to be
adopted and implementedEducation issues to be addressed
Local Offer - good information with the right, quality assured services
Efficiency and transparency around the use of resourcesEffective vehicle for the voice of children and young people
Robust data tied to outcomesA culture shift brought about effective implementation of SEND
Reforms and 0-25 Integration
www.hertsparentcarers.org.uk