Where to find more information
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Factsheets etc | Databases | Communicating
with children | Organisations | Resources
FACTSHEETS, NEWSLETTERS ETC
For more information, to submit an article or to get a copy of Real Issues contact:
Services for Disabled Children,
Gilpin House, Blind Lane, Houghton-le-Spring, Sunderland DH4 5HX
Tel (0191) 566 2190
Fax (0191) 566 2191, e-mail: child.disability@ssd.sunderland.gov.uk
Let Me Be Me
 In
2003 The Audit Commission carried out a project to find out what
services were available to disabled children and
young people
in England and Wales, and what they were like. They then produced
a report about what was good and bad, a handbook for managers and
staff to help them make services better, a set of factsheets for
families (see below) and an accessible version of the report for
children.
The factsheets for parents cover a number of issues and offer
useful advice. Download the factsheets by clicking on the links
below:
Factsheet 1: involving young people in decision making ( 97kb)
Factsheet 2: being told your child is disabled ( 88kb)
Factsheet
3: dealing with meetings and appointments ( 80kb)
Factsheet 4: practical issues living at home ( 95kb)
Factsheet 5: leisure ( 109kb)
Factsheet 6: going into hospital ( 73kb)
Factsheet 7: transport ( 88kb)
Factsheet 8a: short breaks ( 69kb)
Factsheet 8b: questions to ask before your child has short breaks ( 64kb)
Factsheet 9a: benefits ( 84kb)
Factsheet 9b: claiming Disability
Living Allowance ( 86kb)
DATABASE
 Database
of Children with Autistic Spectrum Disorder living in the North East
Dasl-ne is a database of children with autistic spectrum
disorder (ASD) living in the North East of England. The idea behind
it is
to help in planning services for children locally. It will enable
reports to be produced about ASD in the North East, and will answer
questions about changes in patterns etc… This will give all
services and voluntary agencies accurate information to enable them
to provide quality services to all families.
The database will be most helpful if it gives a complete picture.
To this, as many people as possible whose children have ASD are asked to
register with the database.
For more information
contact:
Dasl-ne,
Child and Adolescent Mental Health, School of Clinical
Medical Sciences, University of Newcastle upon Tyne, Sir James Spence Institute, Royal Victoria Infirmary, Newcastle, NE1 4LP
Tel: 0191 202 3040
E-mail: daslne@ncl.ac.uk
Website: www.ncl.ac.uk/daslne
Check the Map
A FREE directory of every
Learning Disability service across the UK and Ireland- all in one
place. For information on:
- Resource centres
- parent
support
- psychology
- education
- health
- therapies
- advocacy
- ... absolutely everything
Durham Community
Information Database
This is a directory of services, activities etc in the County Durham
area. It has a search feature which you can use to find information
about what is available for disabled children.
British Deaf Association on-line
Information Directory
This is a national directory of services, activities etc for people
who are deaf or have a hearing impairment.
COMMUNICATING WITH CHILDREN
Communication
Passport
A Communication Passport helps people communicate with a non-verbal
child. It contains information about the child’s needs, likes
and dislikes etc. Communication Passports are important as
they give the child a voice and help other people to understand
them.
To download a guide created by Scope about Communication Passports, and a template which can be used to create one, here ( 104kb)
Triangle
Triangle is an independent organisation which provides
training and consultancy across the UK, around issues relating to
disabled children such as inclusion, rights, protection and communication.
Part of their work includes producing a range of publications, and
some of these are guides to communicating with disabled children
such as ‘Listening on all Channels’ and ‘Tomorrow
I Go’.
Learning to Listen:
consulting children and young people with disabilities
Save the Children developed this guide in 2001 to help
people involve disabled children meaningfully in making decisions
about things which affect their lives. It can be downloaded by here ( 2.56mb)
Scope
Scope has produced two booklets called ‘A Lot To Say’
and ‘The Good Practice Guide’ which both give lots of
advice, information and ideas about communicating with disabled
children. They are available free from Scope.
For more information, contact:
Library and Information Unit, 6 Market Road,
London, N7 9PW
Tel: 0207 619 7341
E-mail: information@scope.org.uk
Website: www.scope.org.uk
ORGANISATIONS
Disability Information
and Advice Line (DIAL)
Disability Information and Advice Line services, run by
and for disabled people, provide information and advice to disabled
people and others on all aspects of living with a disability. Information
is usually available about welfare benefits, community care, equipment,
independent living, mobility and transport, discrimination, holidays
and much more.
Ask Mencap
Ask Mencap is the on-line
information service for anything to do with learning disability.
It includes factsheets about a range of topics, the chance
to search for organisations in your area as well as national and
regional organisations, and information for people with a learning
disability.
National Service
Framework for Children
The National Service Framework for Children (NSF) is about
developing national standards across the NHS and social services
for children. It is based upon modernisation, breaking down professional
boundaries, and partnership between agencies. It also puts children
and young people at the centre of their care, and builds services
around their needs. Within the NSF sub-groups have been set up around
different aspects of children's health and social care, called External
Working Groups. Ddownload the document here ( 218kb)
NSF External working
group for disabled children
The guiding principle for this group is to make sure disabled
children and young people enjoy the highest quality of life, gain
maximum benefits from educational opportunities, health and social
care, and have their needs and those of their families met promptly
and sensitively, and their choices respected.
The Handsel Trust
The Handsel Trust promotes
effective support for all UK families who have a disabled child
by:
- Empowering parents
- Promoting keyworker services
- Raising awareness of unmet needs
They organise an annual conference, workshops for parents and produce
a range of publications. A newsletter called New Opportunity is also
produced quarterly.
For more information contact:
The Handsel Trust, Parks Farm, Clifford, Herefordshire, HR3 5HH
Tel & Fax: 01497 531 550
e-mail: enquiries@handseltrust.org
RESOURCES
Interconnections
Bulletin
This is a regular electronic
bulletin produced by Peter Limbrick, who specialises in children
with multiple/ complex needs. The bulletin covers news items
of interest to parents of disabled children and professionals.
Past issues of the bulletin can be seen on the I See What's New
website.
To be added to the e-mailing
list to receive the bulletin, e-mail interconnections.services@virgin.net
A Practical Guide
For Disabled People. Where to find information, services and equipment
This guide, produced by the Department of Health has sections
about the Disability Discrimination Act, Help in your local area,
Help with everyday needs, Help with particular needs, and Other
useful organisations. Read it online here. For a free copy e-mail doh@prolog.uk.com
quoting product number 29614 or write to DoH Publications, PO Box 777,
London SE1 6XH.
RESOURCES
FOR PARENTS/ CARERS OF CHILDREN WITH AUTISM
Sunderland for
Autism “Autistic Spectrum Disorder – a Guide for Parents”
A new booklet has been produced for parents of children
diagnosed with Autistic Spectrum Disorder. Parents will now be given
this booklet at the point of diagnosis, with the aim of giving them
a head start in understanding the diagnosis, and knowing what services
are available to support them.
This booklet is available to download here ( 508kb)
For more information contact Jan O’Neill (Educational Psychologist)
on (0191) 553 2240
All About Autistic
Spectrum Disorder. A booklet for parents and carers
This booklet has been produced by The Foundation for People
with Learning Disabilities, and contains information about what
Autistic Spectrum Disorder is, its impact, causes and ways of helping
your child.
To download this booklet here ( 254kb)
"Ibrahim's
Tale - where in the spectrum is he?" by Mrs Shahidun N Rahman.
This is a book written
by a mother about her son Ibrahim who has Semantic Pragmatic Language
Disorder (SPLD) which is part of the Autistic Spectrum. The
book tells of Ibrahim's journey from birth to early teens and his
struggle to overcome severe language difficulties, and the lack
of awareness of this condition in our society and in Ibrahim's own
Bangladeshi community.
The book can be ordered
from most bookshops. The ISBN is 190418135X.
A website about SPLD has
recently been set up by the author.
Autism from the
point of view of someone who is Autistic
Wendy Lawson has Autism. She also has 5 University degrees,
is a qualified social worker and adult educator, and now runs her
own business. Her website gives an insight into life as a person
with Autism.
National Autism
Plan for Children
This is a plan for the identification, assessment, diagnosis
and access to early interventions for pre-school and primary school
aged children with Autistic Spectrum Disorder. It is written by
NIASA (National Initiative for Autism: Screening and Assessment.)
To
download the plan here ( 2.45mb)
Public Autism
Resource and Information Site (PARIS)
The National Autism Society
have developed a database containing information on thousands of
autism based services within the UK.
The Foundation
for People with Learning Disabilities
This is the leading UK charity researching learning disability
issues. They host a useful website which among other things has
a large section of publications, some of which can be downloaded
as pdf documents.
You may need the Adobe Acrobat Reader to view some files on this
page click on the logo to download a copy.
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