AUTISTIC SPECTRUM DISORDER REFERENCE GROUP
INFORMATION SUBGROUP
MEETING 16 SEPTEMBER 2004
13.30 – 16.00
Present:
Fiona Brown, Jane Cantrell, Anna Cossar, Moira Dickinson, Jennifer Kirk, Jean
MacLellan (chair), Robert McKay, Alison Leask, Carol-Anne Mainland, Val Murray,
Dorothy Warren, Margaret Whoriskey
Apologies:
Jan Murdoch, Paul Smith
1.Welcome, introduction and apologies
Members welcomed Fiona Brown from Flexicare.
2. Note of 24 June meeting and matters arising
The minutes of the first meeting were agreed.
Members have previously been emailed the covering letter and consultation document
for the Learning Disability and Autistic Spectrum Disorder National Dataset and were
asked to submit their views direct to Phil McNichol by 17 September.
Ian informed members that Recommendation 25 in the SWSI Borders report proposed
that the field in the dataset for allegations of abuse should automatically be flagged
up.
Paul and Robert are still liaising on a user representative for this group. The person
Robert was keen to nominate was not able to make a commitment to the group.
Robert has referred nominations back to Paul. It was agreed that the representative
should not necessarily be a high functioning autism individual but someone who
would feel at ease at meetings.
Robert, Jennifer, Alison and Jane held a successful meeting to clarify roles and will be
holding quarterly progress meetings. Essentially Jennifer will cover information on
education and Alison, information on health. Robert made available copies of the
report on the business plan for the National Autistic Society post –diagnostic project.
Action points:
 Moira to contact Susan Wong’s son regarding membership of the subgroup as a
user representative.
 Paul to give further thought to a user representative and liase with Robert and
Dorothy
 Dorothy to contact Jan Weir, Head of Publishing, Health Scotland to confirm if
she will be attending future meetings.
3.Presentations on eCare and learning disability database
Ian Kerr and Clare Brogan provided presentations (see annexes 1 and 2).
Ian updated members on why a database is needed, discussed the eCare programme
and outlined objectives and progress made on the eSAY project, and benefits. Clare
outlined further the four goals of the eSAY project, the aim of the National Core
Dataset and provided members with details of the five subsets of information - person
information, housing, current services and opportunities, health information and
finance.
The consultation was delayed while Clare met with SCLD to make input to the dataset
for ASD. ASD and Asperger’s syndrome were originally included under section 4,
Health Information, Item 26, Associated medical conditions, but following
discussions, this item was changed to show whether the person has a learning
disability. The name of the dataset was also changed to include ASD.
Ian explained that the information for the database would be completed during the
single shared assessment and will be continually accessed and updated. ‘Pupils in
Scotland 2003’ provides information on children in education with learning
difficulties. The Children’s Working group is attempting to obtain information on
progress for children with a learning disability or ASD. Margaret raised concerns that
the information held on the database would need to be validated for children with
minor learning disabilities. Moira raised concerns over people with ASD having
access to information and fixating on the concept of ‘Big Brother’. The group agreed
there are issues, which need to be addressed over training of people who will input
information. Clare confirmed that there would be protected areas on the dataset e.g.
fields on mental health. This is still up for consultation. Ian clarified that data can be
held electronically without consent but consent would be needed for sharing of
information.
Members were reminded that they had until Friday 17 September to submit views. It
is important for this group to keep the dataset on the agenda.
Action Points:
 Dorothy to contact Peter Galbraith, the eSAY Project Manager to give a
post consultation update to the group at the end of the year.
 Jean to update Cross Party Group
4. Draft work plan
It was agreed to defer this until the next meeting.
Action points:
 Dorothy to include draft work plan on agenda for 28 October meeting
5. Date of next meeting: 28 October (1.30pm to 4pm, St Andrews House)
Scottish Executive
October 2004
Annex 1: Ian Kerr’s presentation.
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Learning disability and ASD
database
Ian Kerr Inspector SWSI
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Why a database?
 Recommendation in The same as you?
 Local authorities and NHS did not know how
many people with learning disabilities and ASD
they had
 No way of aggregating their current and future
needs
 No way to determine aggregate unmet need
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eSAY
eCare
Electronic same as you
MGF funded
Match funding from SCLD, councils and NHS
Hosted by SCLD (based in Pentagon Centre)
Project started June 03
People with learning disabilities involved in
Project Board
 Electronic information sharing between local
authorities and NHS
 Part of modernising government drive
 Better, faster service provision
 Uniform consistent data standards
 Interoperability (what was that again?)
 3 workstreams single shared assessment,
children's services, learning disability and ASD
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eSAY objectives
 Scotland wide agreed dataset & data standards
 Work with 4 core partners to deliver local databases of
people with learning disabilities and ASD
 Develop system to draw up anonymised data from local
databases (datasets). Aggregate national data
 Help people with learning disabilities to get access to
ICT
 Help councils and NHS to put local databases in place
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eSAY progress
 National dataset agreed (almost)
 3 Core partners will deliver shared local
database of people with learning disability and
ASD by June 2005
 Other local authorities and their NHS partners
have databases
 Building on the work of Glasgow IXCEED
website
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Some benefits of database
 Better faster services informed by shared electronic
information
 People wont have to give the same information over and over
again
 Proactive services
 Better transitions
 Better planning and commissioning of services for people with
learning disabilities and ASD
 Easily see how The same as you? and PHIS Needs Assessment
is being implemented
 In Southern Ireland there is some evidence that database has
led to more resources as they can identify and quantify unmet
need
Annex 2: Claire Brogan’s presentation.
Development of a National Core
Dataset for Learning Disability and
Autistic Spectrum Disorder (ASD)
The dataset is being produced by the eSAY
Project in conjunction with the Social Care
Data Standards 2 (SCDS2) Project at the
Scottish Executive.
Background
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The eSAY Project is part of the eCare Programme
funded by the Modernising Government Fund, which
aims to promote better, more joined up services in
health and social care across all care groups.
The SCDS2 Project is also funded by the Modernising
Government Fund and is working closely with the
eCare Programme to produce datasets and data
standards to support information sharing and the use
of a common language across health and social care.
The 4 goals of the eSAY project
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1.
2.
The eSAY project came from the recommendations
of “The same as you?”, a report published by the
Scottish Executive in 2000.
To facilitate the implementation of joined up
services between health and social work through
information sharing.
To develop a minimum core dataset about learning
disability and ASD to ensure that information is
recorded in a consistent manner across Scotland.
3.
To pilot a national anonymous database which will:
allow meaningful comparisons of levels and
standards of service provision for people with a
learning disability and/or ASD to be made across
Scotland
• provide aggregated information for policy
monitoring and service planning/development
4. To help provide better access to electronic
information.
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The second goal above has resulted in this
consultation document.
The proposed dataset has been compiled building
upon work that was done in Phase 1 of the Social
Care Data Standards project and using other relevant
pieces of work that are currently in existence. It has
also been matched, where appropriate, with the data
standards being developed by SCDS2 which apply
across the whole eCare Programme.
The aim of the National Core Dataset
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The aim is to produce a core dataset that as a
minimum meets the needs of all stakeholders in the
project.
As such, this dataset is not a fully comprehensive
learning disability and ASD dataset; it will not cover
every possible item that could be recorded but only
those that are useful nationally. It is very likely that
there are many items that may be recorded locally
that are not included.
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The current version has been produced in
conjunction with our four partners (Dundee,
Glasgow, South Lanarkshire and the Western Isles),
the Scottish Executive, the SCDS2 Project and the
eCare programme.
It has also been extensively reviewed by other key
stakeholders in the project from both the health and
social work professions.
The Learning Disability and Autistic
Spectrum Disorder Dataset
1.
2.
3.
4.
5.
Person Information
Housing
Current services and opportunities
Health information
Finance
Section 1: Person Information
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1. Area code
2. Gender
3. Year of birth
4. Marital status
5. Ethnic group
6. Religion
7. Country of birth
8. First language
9. Interpretation assistance
10. Preferred communication method
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11. Legal status
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19.
20.
21.
22.
23.
24.
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25. Day opportunities
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12. Accommodation type
13. Accommodation status
14. Housing support
15. Household composition
15a. Lives with family carer (y/n)
16. Tenure type
17. Dwelling type
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18. Appropriateness of current accommodation
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Section 3: Current Services and
Opportunities
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Section 2: Housing
Current care and supports (with provision frequency)
Level of unpaid support (with provision frequency)
Personal life plan (with initiation & completion dates)
Education
Employment status
Employment opportunities
Section 4: Health Information
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26.
27.
28.
29.
30.
31.
32.
33.
34.
35.
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36. Needs of carer(s)
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Learning disability
Autistic spectrum disorder (ASD)
Autistic features
Health needs
Support needed to access services
Assessment type
Challenging behaviour
Risk factors
Domains of need
Reason for unmet need
Section 6: Finance
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37. List of benefits currently being received
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Items suggested for inclusion
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Advocacy
Local area co-ordination
Cause of learning disability
Stesolid
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Direct payments
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