Cypp feedback summary 151216

15th December 2016

CYP Plan Consultations - Summary Introduction SEND Family Voices were asked to provide the voice of families of children and young people with Special Educational Needs and Disabilities. This is in addition to the on-line survey.

Method We used the five values and held consultations either as Open Meetings, or within our disability specific support groups.

We sent invitations to 2000 families across Kingston & Richmond inviting them to join the consultations. Our usual response rate is 10%. For this exercise, it proved to be less than 5% (87 families) We also advertised the surveys via our Dear All bulletins a total of four times over a month.

Response levels Disability specific support groups 21andCo (Downs Syndrome) 7 Phyz (physical disabilities) 7 TRAPHIC (hearing impairment) 6 National Autistic Society 8 Dyslexia 5 Express CIC (autism & co-morbid) 18 Open Meetings 14th November (CYPP Kingston venue) Representing eighteen (18) families of children and young people: Autism 13 ADHD: 2 Downs Syndrome 1 Rare syndrome 1 Global Development Delay 1 Dyslexia 1 Total = 19 (one family had two children with additional needs) 22nd November (CYPP Richmond venue) SFV summary data – 15th Dec. 2016

Representing twelve (12) families of children and young people: Autism 5 ADHD: 3 Cerebal Palsy 1 Complex medical & physical needs (profound) 2 Rare syndrome 1 Dyslexia 2 Total = 14 (two families had two children with additional needs) 25th November (part of coffee & cake mtg) Autism: ADHD: Cerebal Palsy: Downs Syndrome: Hearing Impairment: Visual Impairment: Complex medical & physical needs (profound)

6 1 1 2 1 1 1

Total = 13 (one family had two children with additional needs) Express CIC – November & December – visitors to their offices Autism: 18 ADHD: 3 SPD (specific difficulties) 2 OCD (obsessive compulsive disorder) 2 Tourettes/Tics 2 Total = 18 (of these, 9 families had dual / co-morbid diagnosis)

Raw Data - Children and Young People Total families represented Autism: ADHD: Downs Syndrome: Hearing Impairment: Visual Impairment: Medical & physical needs (inc cerebal palsy) Global Development Delay Rare syndrome SFV summary data – 15th Dec. 2016

42 6 10 6 1 11 1 2

Dyslexia

8

Total = 87 families represented Total conditions represented Autism: ADHD: Downs Syndrome: Hearing Impairment: Visual Impairment: Medical & physical needs (inc cerebal palsy) Pathological Demand Avoidance (PDA) Rare syndrome Dylsexia Global Development Delay Tourettes/Tics OCD

42 10 10 6 1 12 1 2 8 1 2 2

Total = 97 conditions

Chart Title Chart Title 9% 2% 1%

1%

1% 1% 1%3%

18%

38%

13%

45%

2% 1%

6%

9%

15%

12%

11%

Autism: Downs Autism: Syndrome:

11%

ADHD: ADHD: Hearing Impairment:

Downs Syndrome:

Hearing Impairment:

Visual Impairment:

Medical & physical needs (inc cerebal palsy)

Pathological Demand Avoidance (PDA)

Rare syndrome

Visual Impairment:

Pathological Demand Avoidance (PDA) DylsexiaDylsexia

SFV summary data – 15th Dec. 2016

Medical & physical needs (inc cerebal palsy) Rare syndrome

GlobalDevelopment Development Delay Global Delay

Note: haven’t fully checked these % against JSNA’s for K & R (no SEND in R’d JSNA) Autism = highest need. Definition for MLD required (not just DS) – should be second highest need ref. quick look at Kingston SEND JSNA.

Introduction… (from on-line survey) “Shaping services and support for children and young people, Have your say!

Your views will be used to develop the Children and Young People’s Plan (CYPP) for your borough. The plan sets out what services and support will look like over the next four years.

[The Councils’] Our research shows that we need to base these plans on five key values: 1. Keeping children and young people safe and supported at home and school 2. Helping children and young people to be healthy and make good choices about their health 3. Ensuring children and young people enjoy life, do well in school and get involved in activities 4. Providing early help to children, young people and their families 5. Making sure services are right for families and work well The organisations that provide services and support include the Council, children’s services, health services, the police and the voluntary and community sector.

We would like your views in relation to each of these values. In particular:  

What are the most important issues to you around each of the five values?

What changes would you like to see in local services and support in relation to each value?

Above all, this consultation is your opportunity to shape what local services and support for children, young people and their families look like in your local over the next four years.

Have your say and encourage others too.”

SFV summary data – 15th Dec. 2016

Children and Young People Plan Survey – Summary: Overall theme = the right to an ordinary life (irrespective of additional needs and/or disability)

Value 1: Keeping children and young people safe and supported at home and school 1. If there was one thing services could do that would make the biggest difference to 'keeping children and young people safe and supported at home and school', what would it be?

Teach and promote, awareness and understanding  Autism / adhd/ hearing impairment / dyslexia etc are ‘invisible’ disabilities – especially at the high functioning end. There are no physical clues.  Judgement is damaging to the entire family  Safeguarding; educations and protection for socially vulnerable children & young people Create places for the whole family (siblings and all)  eg Not ‘accessible’ playgrounds and ‘regular’ playgrounds. But… playgrounds suitable for the whole family irrespective of their needs (sensory, physical, hi or vi) Recognise parent/carer expertise and knowledge (don’t doubt it – believe it)  Work closely with parents/carers of children with additional needs and disabilities.  Develop services with families  Talk with parents/carers and listen. They are the experts in their own children/young people.

Make navigation of paths to support and accessible environments easy for all parents/carers  Make it easy to be a citizen (of a child/young person with disabilities) in these boroughs.

Value 2: Helping children and young people to be healthy and make good choices about their health

SFV summary data – 15th Dec. 2016

2. If there was one thing services could do that would make the biggest difference to ‘help children and young people to be healthy and make good choices about their health', what would it be?

Being disabled is stressful and leads to mental health difficulties  whether that be physical (wheelchair)  or sensory (autism, hi, vi etc)  develop knowledge and understanding of where the SEND is the problem, or having SEND causes the problem Encourage peer group activities  Including: local, age appropriate, suitably staffed sports, activity and social clubs.  Peer groups (ie like-minded children/young people, not specified by school age)  Places that the whole family can go - safely Increase understanding and compassion for those with ‘invisible’ and ‘visible’ disabilities.  Strange, unusual or challenging behaviour is often the manifestation of extreme anxiety.  Increase understanding and reduce judgement.  What is mental health? (in relative terms)

Value 3: Ensuring children and young people enjoy life, do well in school and get involved in activities 3. If there was one thing services could do that would make the biggest difference to ‘ensure children and young people enjoy life, do well in school and get involved in activities', what would it be?

The right to an ordinary life  Often, children with additional needs and/or disability are ‘invited not to attend’  (How would you feel?)  Siblings have the right to an ordinary life too…

Repeated from Value 2: Encourage peer group activities  Including: local, age appropriate, suitably staffed sports, activity and social clubs.  Peer groups (ie like-minded children/young people, not specified by school age)  Places that the whole family can go - safely

SFV summary data – 15th Dec. 2016

Make ‘reasonable adjustments’ the norm “I just want to be like everyone else” see film, here: http://www.sendfamilyvoices.org/film “I’ve given up mainstream activities or places. The reaction to my son is by other parents is often so nasty! “

Value 4: Providing early help to children, young people and their families 4. If there was one thing services could do that would make the biggest difference to ‘Providing early help to children, young people and their families’, what would it be?

Awareness and Understanding – for all  Increased promotion of voluntary sector support groups  Make referral to vcs faster – not a detective job for families Education for the wider population [leads to] No judgement  Respect for parents. We know our own children and have researched relentlessly. o In Wandsworth – if parents raise queries, it’s treated seriously. o In Kingston & Richmond – if parents raise queries, it’s treated as over fussy parents.

Value 5: Making sure services are right for families and work well 5. If there was one thing services could do that would make the biggest difference to ‘making sure services are right for families and work well’, what would it be?

Listen to families.

Work with us (families) to develop services.  Please don’t ‘fear’ families. Work with us.  Make greater / better use of vcs – widen understanding (mainstream) What are the Councils going to do with this data? A tick-boxing exercise? Or something more useful? Something practical?

SFV summary data – 15th Dec. 2016