david williams, cerebra. relief fear grief blame so i’m not going mad then? what do i do now?
TRANSCRIPT
Diagnosis – What Next??
David Williams, Cerebra
• Relief• Fear• Grief• Blame
So I’m not going mad then?
What do I do now?
Diagnosis – a good thing?
Learning to be a parent all over again
Becoming the expert
Who do I go to for help and information?
Isolation
I thought the diagnosis would sort things out
What now?
Diagnostic LabelsAsperger’s SyndromeAtypical AutismAutismChildhood AutismChildhood Disintegrative DisorderHigh Functioning AutismHyperlexiaKanner’s AutismMild Autism
Moderate AutismNonverbal Learning DisorderPathological Demand Avoidance SyndromePDD-NOSRett’s SyndromeSevere AutismSemantic-Pragmatic Disorder
‘Well, Mr Williams, your son has Asperger’s Syndrome. I can recommend an excellent book by Tony Attwood..’
• Internet• Books• Support groups• Cerebra’s Regional Officers
Understanding the Diagnosis
IEPs School Action School Action Plus Statementing Which school?
Barriers: ‘He’s really quiet at school’; ‘He’s an intelligent boy’; ‘He’s not severe enough to need help’; ‘He’s not actually disabled, is he?’
Education
Mental health or learning difficulties?
Getting an assessment
Getting a social worker
Direct payments
Social Services
Disability Living Allowance
Carer’s Allowance
Increases to other benefits
Barriers: complexity of claim forms; stigma; negativity of claim form; lack of information; mis-information; lack of expert help
Social Security Benefits
10 Regional Officers – 1 in Wales, 9 in England
• General information on condition and support after diagnosis
• Completing benefit forms, tribunal representation
• Help with all stages of SEN process• Assistance with getting help with social
services
Cerebra
Parent Help-Line
0800 32 81 159
Cerebra’s Parent Support
Support InformationParent to
parent contact
Quarterly bulletin
Postal lending library
Days Out
E-learningNews & events Signposting
11
Cerebra’s Parent Support
12
Speech Therapy Vouchers
Wills & Trusts
vouchers
Grants
Sensory
Toys
Holiday House
Portfolios
Sleep
Service
Stress CounsellingSatellites
Any more questions?Any more
questions?
Thanks for coming!
David WilliamsParent Support
Cerebra