Autism Scrutiny 7 th November 2014 The Parental Perspective .

Autism Scrutiny 7th November 2014

The Parental Perspective

www.hertsparentcarers.org.uk

What will we cover?

HPCI – who we are and what we do

Key issues

Making it work


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”


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


It is often said that this is what parents want …..

www.HertsParentCarers.org.uk

NO! they’d be happy with this …..


History


• 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.”


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


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


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


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.”


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.


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.


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.


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


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


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


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.


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


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


Getting it right ……

‘Culture eats strategy for breakfast’

Peter DruckerInternationally renowned Management Consultant

‘When culture and strategy collide culture will win’


Autism Scrutiny 7 th November 2014 The Parental Perspective .

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Transcript of Autism Scrutiny 7 th November 2014 The Parental Perspective .