AUTISTIC SPECTRUM DISORDER REFERENCE GROUP
NOTE OF MEETING HELD 31 OCTOBER 2005
Present:
Anne Aberdein
Claire Brogan
Caroline Brown
John Cameron
Aline-Wendy Dunlop
Bette Francis
Jane Hook
Jane Neil-Maclachlan
Stella MacDonald
Tommy MacKay
Jean MacLellan
John McDonald
Shona Pittillo
Val Sellars
Isobel Sutherland
Dorothy Warren
Apologies: Ken Aitken
Jane Cantrell
Paul Dickinson
Carol Evans
Ian Kerr
Robert McKay
Iain McClure
Michael McCue
Val Murray
Shabnum Mustapha
Frances Scott
Charlene Tait
Polly Wright
Minutes of August meeting
The minutes were accepted as an accurate record of the meeting.
Matters Arising
The group discussed concerns about the ability of the main group to
maintain impetus since the disbanding of the diagnosis and training
subgroups, and whether the group is now representative enough. It was
agreed that if members are unable to make future meetings, individuals
should aim to send an alternative person. It was agreed that a brief
should be prepared of what the reference group is currently doing and
looking at the next phase. Members will then consider at the next
meeting if there is a need for subgroups (e.g. adult services and
guides/planning). It was suggested that members of the reference group
could chair the new sub groups instead of Bette and Jean who will
continue to work in partnership with members. An LA education
representative is needed.
 Dorothy/Jenny to analyse last 3 sets of minutes and summarise
what the reference group is attempting to achieve for January
meeting.
 Members to email Dorothy with thoughts on potential for two
subgroups.
 Members to nominate colleague to attend in their place if
unavailable to attend future meetings.
 Shona to contact Martin Vallely, COSLA for suggestions for
education representative.
Group Membership
Anne Aberdein was welcomed to her first meeting.
Information Sub Group
Bette reported that the group had discussed growing concerns about
persistent email correspondence giving people a negative message. It is
hoped that the information event being planned by the subgroup will lead
to a positive sharing of information across Scotland. The event will be
held at Airth Castle on 28 February.
The group agreed it is important that the Cross Party Group is
acknowledged for its work to ensure the best for all people and is not
avoided by parents because of perceived negative perceptions.
PHIS 2 was handed to members for comment. The intention is to
distribute it to attendees at the information event.
 Dorothy to email group draft programme for information event.
 Jean to seek views of Lewis MacDonald regarding a possible
meeting with convenors of the CPG. The meeting would give
everyone an opportunity to see how information could be better
disseminated.
Training Leaflet
Bette apologised that the skeleton training leaflet is not yet ready.
Jennifer Pickthall will join the team from 21 November and take work
forward on the ASD front.
Advocacy
Bette was disappointed to report that the Advocacy Safeguards Agency
has now been disbanded. The agency had identified positive work. NHS
QIS, the Health Councils and the new team in the SE will take forward
some of the ASA’s role, and this will be clarified in the Advocacy report.
Health conference
Bette reported that bookings are currently at 200 consisting mainly of
professionals. Ken Aitken has been unable to attend the last two
conference planning meeting due to illness but has given assurances
that he will be at the next meeting on 5 November. It was agreed that
the booking date should be extended to 12 November and subsidised
places should be offered to encourage parents to attend. The Highland
Medical Director has had to withdraw but Jean will chair. Lorene Ahmet,
a parent and scientist from Action Against Autism was invited to speak
as a carer but chose not to accept as she wished to present at the
conference as a scientist at a level at which participants may have found
difficult to engage with. A conference booklet will be handed to
delegates with information on the speakers and where to get further
information.
 Dorothy to amend conference flier regarding subsidised parent
places and email John McDonald, NAS and other relevant
organisations for forwarding onto parents
 Stella to investigate cost of minibus for Fife parents and contact
Dorothy for approval.
Respite
Isabel reported that she is investigating shared care with Autism Alliance
and NAS that do shared respite. The offer of some limited funding this
year would enable an initial scoping of available respite but it is unlikely
that a significant project could be developed without longer term
resources. Care 21 will be published shortly and there may be
opportunities to identify a piece of work that fits in with the
recommendation.
 Isabel to prepare proposal for next meeting and to email group
with current best practice.
Training pilot evaluation
Members were handed copies of an email from Iain McClure outlining
the progress of the ASD assessment pilot, particularly regarding the 3Di
development. Members agreed that £5,000 should be earmarked so that
3Di training can be offered to the participants.
Tommy reported that he had been working with the team since June to
see how evaluation can be worked into the design. The next stage is
investigating if service delivery for assessment of ASD can be improved
in rural/urban areas by establishing Tier 2 multi-disciplinary teams. Up to
40 participants (aged 0 to 18) in Argyll and Bute (rural) and East
Renfrewshire (urban) will be sampled. 4 multi-agency teams, ideally
including a medic, speech and language therapist and educational
psychologist, will be trained on a 5 day course by members of current
Tier 3 teams. This is scheduled for January 2006. Tommy outlined the
strengths and weaknesses of the training (annex 1 refers).
The group agreed that the project would bear interesting results if Tier 2
and Tier 3 correlated well. It was acknowledged that co-morbidity will
create most problems. Interpretation is important and orientation on
ADOS is worthwhile. John Cameron raised that it might be useful to
adopt the same methodology to compare adults with autism with adults
with Aspergers etc.
 Tommy to speak to Caroline Brown, John Cameron, Jane NeilMcLachlan and Iain McClure regarding evaluation of all 4 pilots.
 Tommy to discuss additional funding for evaluation of pilots with
Bette.
Exploring service delivery models
John McDonald reported that one of the big issues is the lack of actual
services on the ground. The challenge is how to meet demand. There is
a need to support the whole life journey with variable complexity of life
position and emergent need. It is therefore extremely difficult to get an
average cost for care. Expectations in childhood may not be met in
adulthood. There are design issues around the nature of services and
services for people with ASD. Jean drew the group’s attention to
parallels with the Kerr report in anticipating needs of an ageing
population.
The group discussed the problem of social workers working in isolation,
putting together expensive packages for individuals and the notion of
‘one size fits all’. Members discussed problems with the single shared
assessment and lack of knowledge by commissioners and social
workers leading to unsuitable services. Emergent skills are not
mentioned in assessments despite individuals with ASD continuing to
develop throughout their lives given back up and support.
It was agreed that there is a need to support adults with ASD in the
family home. Long term needs should be addressed and it is important
to be realistic about what the family can deal with. People with ASD
have the right to lead their own lives and follow their own lifestyles.
Capacity building is vital, both for individuals with ASD, their families and
local teams.
The focus of sub group work needs to ensure changes in services on the
ground. Themes could be around policy into practice. Service
commissioning is also the key to ensuring services fit for purpose.
 Members to email Dorothy with further thoughts.
 Policy colleagues in eCare to be invited to future meeting to
discuss single shared assessment.
 Polly Wright to be invited to do presentation as planning and
commissioning officer in a local authority.
VA Bill
Jean reported that the consultation had concluded end September and
around 130 responses were received. A list of those unsuitable to work
with vulnerable adults will now be drawn up. There are also possible
related developments in a vetting and barring scheme following the
Bichard response. The new system will probably be brought in by
stages, starting with children and moving onto adults.
Respondents are in favour of adult protection committees which are
envisaged as smallish structures. It should be a duty in the Bill to share
information and it will be for the lead agency to decide who carries out
the investigation. This will be flexible. Bette is currently leading on the
third area – people with learning disabilities who are compulsorily
detained. No further legalisation is required but policies need looked at.
The Bill may include other elements on direct payments changes, AWI
and issues around ordinary residence.
 Bette to circulate membership of steering group around Reference
group.
 Bette to flag up items of relevance to VA Bill to members at future
meetings.
Update on UK Autism Research Co-ordination Group
Bette reported that she had attended a meeting of the DFeS group on 28
October. The group are attempting to pick up knowledge on research
and agree a way forward. The remit is not yet finalised. Members of this
group were not aware of the SIGN guidelines and were pushing for an
ASD network and database which we already have in Scotland. There is
good practice in Wales too. There is a lot of joining up to be done.
A.O.B.
 The group agreed the next meeting should be rescheduled to 23
January to allow time for action to be taken on issues discussed.
Date of future meetings
Monday 23 January,10.00am to 4pm, COSLA, Rosebery House,
Edinburgh
Monday 27 February,10.00am to 4pm,St Andrews House, Edinburgh
Scottish Executive
December 2005