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ANNEX D: Models of support
Research highlights the need to consider models of support specifically for people with autism spectrum disorder.
A Systematic Review of the Comparative Benefits and Costs of Models of Providing Residential and Vocational Supports to Adults with Autistic Spectrum Disorder (Janet Robertson and Eric Emerson, Institute for Health Research, Lancaster University ) states that, in contrast to the considerable body of knowledge that exists regarding the comparative quality of life related outcomes and comprehensive costs of models of residential supports for people with intellectual disabilities, almost nothing is known about the comparability of residential supports for people with autism spectrum disorder. The results of earlier studies suggest that people with autism spectrum disorder require somewhat different vocational supports to those currently recommended for people with other types of developmental disabilities.
This list of examples of models of support is not designed to be all inclusive and there will be many other models of good practice throughout Scotland. However these examples have been selected to demonstrate:
- Support for different age groups
- Support for people across the autism spectrum
- Support throughout Scotland including support available in more rural areas
- Support that changes as levels of need change
- The range of support required from low level "light touch" to intensive support
Whilst the majority of models here outline specialist services, it is hoped that support for people on the autism spectrum will also develop across more generic services.
ADULT SERVICES
LOCAL AREA COORDINATION
Local Area Coordinators have been employed in 26 local authorities in Scotland to work with people with learning disabilities and autism spectrum disorders and their families. They work on the principle that people with disabilities have the same rights and responsibilities as all other people to participate in and contribute to the life of the community.
Their primary function is to support self-assessment, establish personal life plans and support people to implement those plans. They contribute to a whole system approach and aim to tie people into community services and networks. In this way they can help people to access low cost and no cost services and reduce the need for formal services.
National guidance on the implementation of local area coordination is currently being developed.
SELF-DIRECTED SUPPORT
Self-directed support (direct payments) in Scotland is part of the mainstream of social care delivery, targeted at empowering people and putting the principles of independent living into practice. It enables individuals to direct the care or support they need to live more independently at home and can be instead of, or in addition to, services that might be arranged by their local authority. These might be community care and children's services, housing support services and equipment and temporary adaptations.
Through self-directed support, users are able to take responsibility for their own lives, from deciding who comes into their houses to provide support, to the priority given to different tasks in any given day, like when they get up in the morning. This can be particularly important for people with autism spectrum disorders. Self-directed support helps increase the flexibility, choice and control people have over their lives, so that they can live more independently. The flexibility achieved is such that even those with the most complex and multiple needs can have self-directed support, using the Adults with Incapacity (Scotland) Act 2000 to safeguard their interests.
Guidance on self-directed support can be found at the following link http://www.scotland.gov.uk/Publications/2007/07/04093127/0 .
ONE STOP SHOP ADVICE AND INFORMATION SERVICE
Number 6, Melville Crescent, Edinburgh
This service for adults with Asperger Syndrome and High Functioning Autism in Lothians, originally funded by the Scottish Executive via Lothian Health, provides a wide range of low level supports (drop-in, social groups, advice, information, volunteer support), aiming to prevent the need for more intensive, costly interventions. The tender was awarded to Autism Initiatives UK in 2005 who are prioritising a funding strategy to ensure its continuation. (Appendix D)
Further information contact: www.number6.org.uk
AUTISM SPECTRUM DISORDER COORDINATOR
Autism Coordinator, Scottish Borders
The Adult ASD Coordinator post was funded from November 2005-November 2006 by the Scottish Executive. The remit of the Coordinator was to be a 'change agent' in the lives of adults with ASD, their families, friends, carers and the services that support them in the Scottish Borders. It provided a planning role for NHS Borders and Scottish Borders Council services for adults with ASD and their families, that has driven forward the ASD agenda in the area.
Further information contact: Scottish Borders local authority
SUPPORTED LIVING
Peterhead service, National Autistic Society Scotland
Recently opened nine "autism friendly" flats where individuals take out their own tenancy. Support is provided by NAS care staff tailored to individual need. The new buildings were a partnership approach by Aberdeenshire Housing Partnership, National Autistic Society and Aberdeenshire Council with a key funder being Communities Scotland.
Further information contact: Carol Evans 0141 221 8090 carol.evans@nas.org.uk
Outreach, National Autistic Society Scotland
This is an individually tailored support package for people with autism of any age across Scotland. The individual is matched with appropriate support staff who can support them at; home, in further education, employment, school, with social skills and life skills. It can range from a few hours a week to 24 hours a day.
Further information contact: Willie Gilmour on 0141 221 8090, willie.gilmour@nas.org.uk
VOCATIONAL TRAINING AND SUPPORT
Café Kudos Carluke, South Lanarkshire
Developed by the Scottish Society for Autism, Café Kudos involves people with Autism and Aspergers delivering a quality café service on a local high street to local people. The café offers both vocational experience and training for formal qualifications in partnership with the local FE College. The café has strong community connections and a broad customer base. It is intended to promote inclusion for individuals living with autism by building key skills that support independent living. The café builds on individual's skills and assets and addresses development needs through individually focussed programmes of support.
Kudos Crafts offers individuals with autism the opportunity to develop skills and experience through delivering a service to local people through a high street shop, providing a crafts and gifts service to customers. Individuals are supported to develop skills in card and gift production as well as retail skills. Individuals are encouraged through person centred programmes to build on their skills and assets and to acquire new skills that support independence.
Further information can be obtained from Kenny.Bryce@autism-in-scotland.org.ukTel. 01259 728361
Gratwinny Horticultural Unit Coalsnaughton Alloa
Developed by The Scottish Society for Autism, The Unit offers stimulating and age appropriate activities in a real work setting that encourage adults with autism towards a more independent lifestyle and improved quality of life. The Unit is a horticultural nursery open to the public offering a range of bedding plants and herbaceous plants for sale. Service users are involved in all activities and also offer a wholesale service to local Garden centre outlets. Social skills are built into each programme and taught in the real work setting. In addition to practical skills in horticulture, non-specific work skills such as being on time, teamwork, having a break, health and safety etc are also integrated into the programme.
Further information on both services is available from autism@autism-in-scotland.org.uk
DAY/ACTIVITY SERVICES
Inverleith Activity Centre, Edinburgh
Recently established in Edinburgh by Autism Initiatives UK, this service provides individualised programmes of activities for up to 9 adults per day. The service is available throughout the day including evening and weekends. It offers a range of community activities which are delivered from the security and consistency of a small service base.
Further information contact: inverleithday@autisminitiatives.org
The Abbie Resource Glasgow
Operating 7 days a week throughout the year, the Abbie Resource is an innovative and individualised service for adults with autism, which can accommodate individuals with a wide a range of needs. Staff build individual strategies which maximise each service users potential.
Further information on both services is available from autism@autism-in-scotland.org.uk
Joint Autism Service - Branchline and Day Services with Turning Point Scotland and Building Healthy Communities
Building on joint work undertaken throughout 2005-07, Dumfries and Galloway have launched a twelve month pilot project sharing a base and resources. As a local autism information point, work experience base, support planning and drop-in support facility, it will also offer opportunities for users, carers and workers across agencies to work and learn together to increase knowledge and opportunities for adults with autism or Asperger Syndrome. Open one day per week initially, it will promote active involvement of those on the autistic spectrum in the delivery of the project. For details contact Dumfries and Galloway.
DEVELOPING EMPLOYMENT OPPORTUNTIES
ASD Social Firms Project
In Summer 2007 Autism Initiatives UK appointed on behalf of a group of ASD agencies a Social Firms Coordinator with the remit of supporting agencies to develop Social Firms for people with ASD and to support generic Social Firms to become more accessible to people with ASD. The post is funded by the Scottish Government for 2 years and a network of ASD Social Firms will be developed to sustain the project in the long term. A Social Firm is a "business that has been set up specifically to create employment opportunities for people with a disability or disadvantage" and can be beneficial to people with ASD in that employment can be created around the known skills and interests of individuals.
Further information contact: Susan Astwood ( ASD Social Firms Coordinator) 0131 240 2370 sfc@autisminitiatives.org
ASPIRE Employment Project
This project was specifically developed to help individuals with high functioning autism and Asperger Syndrome access and sustain employment. The project also provides a 12 week training programme - SUSS (Support and Understanding of Social Skills). The aim of the course is to assess and identify individual social skill deficits and address through the use of appropriate intervention, that will equip project participants with the necessary tools and techniques to facilitate development of existing and new social skills. SUSS encourages individuals to become more self-aware, increase participants confidence and help achieve their employment aspirations.
Further information contact: Jill Morris Tel: 08451 55 55 55 446008
E-mail: jill.morris@fife.gov.uk
Employment Development Worker
This worker supports individuals on the autism spectrum in Moray. She works with each individual according to their particular need, spending time working with each person on a one to one basis, building up a rapport with the person. A multi-disciplinary approach is important, to ensure continuity and stability for the individual, this also ensures that the support each person gets is Person Centred and tailored to their specific needs. The work is in accordance with the blueprint for supported employment as advocated by the Scottish Union of Supported Employment and the Scottish Government. For further information contact Moray Council.
Prospects, National Autistic Society Scotland
This service runs from Glasgow, Inverness and Aberdeen matching clients to jobs and taking clients through the process of becoming job ready. It offers training and support to employers and ongoing support to the clients.
Further information contact: Robin Walker on 0141 221 8090, robin.walker@nas.org.uk
PEER SUPPORT AND SOCIAL GROUPS
Aspie Solidarity Group (age 25+)
This is a self-help group in Fife where members talk of their positive experiences, discuss issues of concern and the way forward. Life experiences are also shared, developing self-understanding and acceptance. This group intends to create a series of Social Workshops, where members may learn how to deal with difficult situations. Outings are organised to assist in developing friendships and confidence in accessing leisure pursuits.
Further information contact: Stella Macdonald on 01383 623567. www.phad-fife.org.uk
WISE (Welcoming, Interaction, Supportive and Educational) group (14-25 yrs old)
In this group members reflect on positive experiences, and celebrate successes. Much discussion involves solution finding for individual challenges, encouraging the development of coping strategies and self-understanding. Friendships are encouraged.
Further information contact: Stella Macdonald on 01383 623567. www.phad-fife.org.uk
Befriending Services, National Autistic Society Scotland
These services run in most cities in Scotland offering opportunities for individuals to improve their lifestyles with one to one support in befriending and in group settings with social groups.
Further information contact Robert Moffat on 0141 221 8090, robert.moffat@nas.org.uk
RESPITE AND SHORT BREAKS
The Asperger Support Project, Fife
This group meet fortnightly in different areas of Fife providing social activity clubs for adults and adolescents with an autistic spectrum condition to encourage the development of social skills improving their self esteem and confidence by providing leisure opportunities, and short breaks. Through the Asperger project Family/Carers benefit from the respite in their caring responsibilities. This service has proven to be extremely beneficial to the members and their families.
Further information contact fifeactiononautism@hotmail.co.uk
Clannalba - Respite and Transitional Assessment Centre Lamington by Biggar, Scottish Society for Autism
Clannalba combines residential respite care and family support to create a unique integrated service. It offers flexible, individual support to children and adults with autism and their families. Clannalba provides a level of support to enable people with autism to live in the community with minimal impact on family life and maximum contribution to personal enhancement.
Preparing for a New Life supports young and mature adults to prepare them for living more independently in their own community. Team Weekends offer Teenagers or young adults with Asperger Syndrome a range of personal and social skills development opportunities over a programmed series of breaks. Activity Breaks are also available to support Adults and children develop recreational and social skills.
Further information contact Adam Brodie 0845 3009272 Fax: (01899) 850330
Email: clannalba@autism-in-scotland.org.uk
Auchenhuive Respite Centre, Whiterashes, Aberdeenshire
Opened in early 2008 by Autism Initiatives UK, Auchenhuive is a 5 person residential respite and short break service for adults and children over 12 with autism spectrum disorder. The service is set in 8 acres of gardens and pastureland and was developed in response to the acknowledged need for additional autism specific respite services. Referrals are taken from all over Scotland and guests benefit from a high quality environment and individualised packages of respite support.
Further information contact: 01651 882278 auchnenhive@autisminitiatives.org
Policy and Practice Guidance
CHILDRENS SERVICES
SPECIAL SCHOOL
Daldorch House School and Continuing Education Centre, East Ayrshire. National Autistic Society Scotland.
A 52 week residential school for 59 pupils and 12 day pupils. A senior campus was opened in late 2007 where individuals have their own purpose built flats with their own tenancy to ease them from school life into adulthood up to the age of 21. The school offers outreach which includes training, assessment, consultancy and direct support to clients. A family support programme facilitates the transition of pupils to adult settings.
Further information contact: Shona Pinkerton on 01290 551666, shona.pinkerton@nas.org.uk
New Struan - A Centre for Autism, Scottish Society for Autism, Alloa
New Struan School demonstrates that children with ASD benefit from education approaches and programmes that specifically target the challenges of autism. Staff, parents and pupils work together to create highly individualised plans that aim to improve the child's social understanding, communication and ability to adapt and solve problems. This specially designed school enables children with ASD who have complex and intensive educational support needs, to achieve their maximum potential and a greater level of social inclusion.
Further information is available from Jim Taylor Tel: 0845 300 9281 or 01259 222000, Fax: (01259) 724239 newstruan@autism-in-scotland.org.uk
TRANSITION SERVICES
New Ridgepark - A Centre for Transition, Lanark
Focusing on the person with autism's journey through life, New Ridgepark offers placements for individuals who require a transition service from school, college or home as well as for anyone going through a significant life event who requires a period of intense support or crisis intervention.
The aim of this service is to evaluate and appraise the person's needs, identifying their strengths and limitations within all areas of their life, to provide strategies that enable them to cope with their limitations and to offer opportunities that will enhance and develop their strengths. The service offers intensive support and intervention at the right time that has proved to be successful and cost effective, thus avoiding the need for higher levels of support later in life.
Further information from: Elaine Hislop, 01259 728400 ridgepark@autism-in-scotland.org.uk
FAMILY SUPPORT SERVICES
Autism Spectrum Disorders Integrated Network ( ASDIN)
This is a project that has been funded by the Scottish Government through Changing Children's Services Funding. ASDIN is a multi agency group including a parent and staff from health, education and social services with training and experience in autism. They work across Dumfries and Galloway providing information, training, advice and support for parents/carers, families and staff from public, private or voluntary agencies who have contact with or work directly with children and young people with Autism Spectrum Disorders and Social Communication Difficulties.
ASDIN focuses on building capacity by developing an understanding of autism, stressing the importance of developing understanding and skills within families and people who work directly with children and young people, encouraging a focus on progressing independent skills, developing strategies and targets which relate to social communication and interaction difficulties and sexual health and relationship education. For further information contact Dumfries and Galloway Council.
Help! National Autistic Society Scotland
A programme of support for one to three days for a small group of parents to learn about ASD and how it affects their child, information about what is available in their area, legislation and benefits. This is for parents whose child has recently been diagnosed and runs across Scotland for groups up to approximately 10 families.
For information contact: Barrie Cooper 0141 221 8090, barrie.cooper@nas.org.uk
DIAGNOSTIC SERVICES
The development of ASD diagnosis for adults in the Managed Care Network Area - Lothian, Fife, Forth Valley and Borders.
The Regional ASD Consultancy Service is a Tertiary level multi disciplinary team with staff from each of the four Health Board Areas in South East Scotland. It is a "virtual" team with one full time member and the others giving time in special interest sessions or by arrangement with their managers.
In October 2007 there were:
- 4 Consultant Psychiatrists (2 LD and 2 Gen Ad Psych, one specialises in Schizotypy one in Affective Disorders)
- 2 Consultant Clinical Psychologists
- 1 Consultant Speech and Language Therapist (who is co-ordinator)
- 4 Specialist Nurses (Community & inpatient)
- 3 Specialist Registrars (1 LD and 2 Gen Ad Psych)
- 1 Clinical Psychology trainees.
The team receives referrals from the age of 18. Average age of referral is 38. These people are usually very complex and several members of the team may see them to give different perspectives. No one test is appropriate for all and each individual referral may be assessed using a different combination of tools. ADI-R is used where appropriate. DISCO, AQ, EQ, SQ, KADI, SCQ and a range of neuropsychological assessments, language assessments etc may also be used. Psychiatrists carry out psychiatric interviews. Early developmental history is gathered by whatever means possible (interviews with parent if available, partner, family member, early medical records, school reports etc). There is a clear Diagnostic Care Pathway document which is adhered to and audited regularly so there is a consistent method of addressing an inconsistent type of referral. Evaluation forms are completed by the referrer and the clients themselves in order to maintain quality and improve it where necessary.
Training
ADI-R: the team did a days training to enable the clinical use of ADI-R. In addition three SPRs also attended the full course in Cambridge. After that it was used where appropriate. It was found by the team that it was sometimes difficult to do, as parents were having to cast their minds back many years to when their child was aged between 4-5. eg an 89 year old mother about her 56-year-old daughter.
It was found to be extremely time consuming but valuable with some cases.
It was found not to be so useful for adults with average or above average IQs. In practice the majority of our referrals. (July 2007: 245 non LD referrals, 32 LD referrals)
The ADI-R clinical use courses for Fife, Forth Valley and Borders are still running.
ASD "awareness" courses for Psychiatrists and Clinical Psychologists have been run in Forth Valley and Borders. The next step is planned for March 08 in the Borders. However, significant progress has been made.
A new programme is just starting for SPRs wanting to gain knowledge and experience in ASD. They will be offered 6 month supervised placements. A document with further information is available.
Other Diagnostic progress
An ASD diagnostic care pathway for Community Learning Disability Teams ( CLDT) is being piloted in Lothian. This is in an attempt to address the apparently large number of people with a Learning Disability who may be on the spectrum but who may have been missed over the years. This project is being audited and after the 3 month pilot should be rolled out to all the 8 CLDTs in Lothian. Forth Valley and Borders are likely to implement it too if it proves useful.
Other Training
The one day "Understanding and working with adults with Asperger Syndrome" courses run at Number 6 have become very popular with General Adult Psychiatrists in Lothian. It is gratifying to see that many of the Consultants have now attended. Junior Medical staff also attend as well as GPs and Social Workers. Many Clinical Psychologists have attended. Following these courses there tends to be an upsurge in referrals.
Summary
Training in all aspects of ASD seems to be more useful than just using a tick box tool. If people are more knowledgeable about the Spectrum as a whole it can help to make more useful diagnoses with more practical recommendations. Availability of knowledgeable Medics and Clinical Psychologists is extremely helpful. The absence of diagnostic instruments for adults is a concern. Most seem to be for children.
CASE STUDY - SOMEBODY WITH ASPERGER SYNDOME
Questions, questions, incessant questions………..
- What is the world all about? What are relationships all about? Why are tasks carried out? Why in a particular way? What may be gained? What's the point? Am I of any value? How can I fit in? What are people doing and why? How do people know what to do? What does this mean? What does that mean? Who exactly, and of what use, am I? Why, why, why, what, why…………?
I am an observer, existing at the edge of other people's experiences. A 'nobody': detached, living in my own world. I want to belong, but how do I slot in? What should I be doing? Who should I copy? How will I cope?
I don't understand.
My world is an infinite world of sense, sensation, and facts. A world with no boundaries - whether experience or thought. A sensory-crowded, literal and unpredictable existence. Thoughts overloaded with processing, reasoning, rationalising and actioning - in a state of high-anxiety. I have an IQ of 155, and ability to multi-think in a visual and multi-dimensional way, but difficulty with everyday tasks and living as 'part of the crowd'. I feel clumsy and awkward. Daily life is intense and serious, with all matters demanding urgent attention. I live very much in the present moment, with each moment bringing with it pressure to perform and 'get it right', but all too often failing. Actively reflecting on, and utilising, social rules prove problematic. Leaving me permanently challenged.
WHAT HAS HELPED?
1) Pre- and post-diagnostic support, including advocacy and counselling.
2) Appropriate delivery of support and care, by professionals (including GPs, dentists, opticians etc.) who understand.
3) Timely support and advice, together with access to information on local and national services that cater for the needs of families and those diagnosed. Information packs handed out at time of diagnosis.
4) Local access to a well equipped collection of books relating to ASDs.
5) Parents who understand and have gained knowledge about the condition and tools/aids that may be used. Additionally, that sibling needs are recognised and addressed.
6) To be able to integrate: becoming active participants and contributors. Offered 'taster' opportunities to experience possibilities and allow discussion.
7) Through learning, developing and using independence skills: social, life, living, housing, employment and vocational. Group-work has been beneficial.
8) A number of services that have greatly assisted an increase in capacity building include: training for parents; respite; befriending; support groups; direct payments; after-school clubs; leisure and recreational opportunities, and play schemes.
9) Self-help groups for those diagnosed to share and learn from each other's experiences and coping strategies. Gaining self-understanding and companionship of likeminded people.
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