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The Scottish Strategy for Autism

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Annex 1: Related Government policy

The purpose of this Annex is to set out the details of what the Scottish Government and its partners delivered in response to the findings of the PHIS[24]ASD Needs Assessment Report under 5 main themes. It also provides an account of other policies from which individuals with ASD may be able to benefit. These include both national and local initiatives.

Public Health Institute of Scotland Needs Assessment Report on services for people with ASD

PHIS was commissioned by Scottish Ministers to carry out a needs assessment of services for people with autism spectrum disorders ( ASD) in Scotland. The aim of the PHISASD Needs Assessment Report was to provide information for service commissioners on the best available knowledge about autism spectrum disorders and current service provision in Scotland and guidance on how these services might better meet the needs of both children and adults with autistic spectrum disorders in the future. The report published in December 2001 described a patchwork of services and made 32 recommendations that set out what ideal services should look like.

Scottish Ministers accepted that a specific programme of work was required which led to the formation of the ASD Reference Group which grouped priorities under
5 categories for action of improving diagnosis and assessment, matching resources to need, standards and monitoring, staff training and education and research.

Theme 1: Diagnosis, assessment and interventions

A SIGN Guideline

A major recommendation of the PHIS Report was that the Scottish Intercollegiate Guideline Network ( SIGN) should develop evidence based clinical practice guidelines on ASD for the National Health Service ( NHS) in Scotland. These are derived from a systematic review of the scientific literature and are designed to accelerate the translation of new knowledge into action to reduce variations in practice, and improve patient-important outcomes.

An evidence-based guideline for children and young people with ASD was developed and published in 2007 (the SIGN guideline on children and young people with autism spectrum disorders ( ASD) ( SIGN 98)). [25]SIGN 98 has been well received nationally and internationally and indications are beginning to emerge that it is influencing clinical practice both as regards assessment and clinical interventions. A formal impact assessment of SIGN 98 is expected.

The guideline considered the evidence base in the world literature from 1996-2006 with regard to screening, assessment and clinical interventions. SIGN 98 was published in June 2007 and took 3 years to complete. In its remit and outcome, the guideline represented the most comprehensive summary of the evidence base on ASD to date. Important targets for audit and research were incorporated, as well as recommendations for information to be shared with families and guidance for ASD assessment rigour in future studies. The guideline also included versions for parents/carers and young people (the product of a young persons' focus group during guideline development).

The evidence base for screening, assessment and clinical interventions in the 0-18 age group has been said to have extensively benefitted parents, families and clinicians over subsequent years both in Scotland and beyond, although its impact has not yet been assessed objectively.

The National Institute for Clinical Excellence ( NICE) is producing its own guideline for England and Wales but has specifically narrowed its remit as it regards the work of SIGN 98 as being optimal for the whole of the UK, especially in relation to clinical interventions. International attention has been focussed on SIGN's achievement with regard to guideline number 98. SIGN 98 has also been chosen as one of two SIGN guidelines (from over 100 that have been published so far) to be developed as an 'e- CPD' module, accessible internationally (to all professionals and non-professionals) via the SIGN website www.sign.ac.uk.

Improving diagnostic methods and waiting times

It was evident that, whilst early diagnosis of ASD was of crucial importance, lengthy delays were common. A project team was therefore set up in 2004 to examine whether this issue could be reliably addressed by local teams trained by a specialist ASD assessment team.

Four local multi-agency ASD assessment teams in Argyll and Clyde were trained in diagnostic assessment. Their assessments of 38 children and young people using the Autism Diagnostic Observation Schedule-Generic ( ADOS-G) were video-recorded and independently assessed by the specialist team. This resulted in a high level of correspondence between the diagnoses of the local teams and of the specialist team. The number of assessments carried out increased and there was a considerable reduction in waiting times.

This study demonstrated the potential feasibility of creating local, multi-agency ASD assessment teams, which will serve to reduce waiting times, improve clinical skills at a lower level of specialism and thereby improve the overall quality of ASD service.

Two of the four teams in the original study (Helensburgh and Cowal and Bute) have continued to function independently from the specialist team, meaning that ASD assessment waiting lists in their catchment areas have remained low. One team (Paisley) ceased to function straight after the study was completed due to inability of the differing agencies to organise funding and staffing. The fourth team (North Argyll) initially functioned well after the study but has recently encountered funding and staffing difficulties. The study [26] has been published by the international peer-reviewed journal 'Autism' as the work provides important insights about the feasibility of establishing community-based diagnostic teams for children referred for suspected ASD. It has also been referenced by the NICE guideline [27] on ASD in children and young people as an example of innovative assessment practice.

A good practice example

The development of ASD diagnosis for adults in the South East and Tayside ( SEAT) Learning Disabilities Managed Care Network Area - Lothian, Fife, Forth Valley and Borders.

The Regional ASD Consultancy Service ( RASDCS) is a Tertiary level multi disciplinary team with staff from each of the four Health Board Areas in South East Scotland and has been running since 2002. It is a "virtual" team with one full time member of staff and the others giving time in special interest sessions or by arrangement with their managers.

As of August 2011:

  • 4 Consultant Psychiatrists
  • 1 Staff Grade Psychiatrist
  • 3 Consultant Clinical Psychologists
  • 1 Consultant Speech & Lang Therapist
  • 3 Specialist Nurses
  • 1 Specialist Registrar
  • 1 Administrator

The team receives referrals from the age of 18. Average age of referral is 38. RASDCS operates at Tertiary level; referrals are accepted from General Adult Psychiatry or Learning Disabilities Services. Direct referral or referral by GP is not possible. Referral may be for Assessment, Diagnosis or Advice. RASDCS can not take ongoing responsibility for care.

The team currently receives about 8-10 referrals per month. Referrals at this level take an average of 10 hours to assess, frequently with very considerable individual variation. A key aspect is the likelihood of an extensive time commitment required by staff.

These referrals are often very complex and may be for second or even third opinion. Several members of the team may see them to ascertain different perspectives. No one test is appropriate for all and each individual referral may be assessed using a different combination of tools. Autism Diagnostic Interview-Revised ( ADI-R) is used where appropriate. Diagnostic Interview for Social and Communication Disorders ( DISCO), Autism-Spectrum Quotient ( AQ), Empathising Quotient ( EQ),Systemising Quotient ( SQ), Krug Asperger's Disorder Index ( KADI), Social Communications Questionnaire ( 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. Clinical Governance support is provided by CGST in Lothian. Recent analysis carried out by CGST found that 100% of referrers returning evaluation forms felt that the service met their expectations. Of the people referred to the Service 100% found it useful to have been referred to the team and 93% felt their expectations had been met.

Some team members are involved in ASD research projects and may recruit from clients on the database (subject to NHS Ethics Committee approval)

Other Diagnostic progress

An ASD diagnostic care pathway for Community Learning Disability Teams ( CLDT) has been piloted in Lothian and has been introduced across the 8 CLDTs in Lothian. This is also being introduced by Forth Valley and Borders CLDTs

The one day "Understanding and working with adults with Asperger's syndrome" courses continue to run at Number 6 (Asperger Centre in Edinburgh). These are co-facilitated by NHS and Autism Initiatives staff and are open to NHS and Council staff across Lothian.

The SEATMCN Professional Development group have been running 8 week courses for non registered staff across the four Health Board areas. This includes a day on ASD. This is delivered by RASDCS team members. Additionally, a series of seminar days are being run for registered staff and this includes days on a variety of ASD related topics under the heading of "Good Autism Practice?"

Next Steps

Maintenance of the Regional ASD Consultancy Service is always an issue. It would be helpful to have more committed and funded time from General Adult Psychiatry. It may be logical to join Adult Neurodevelopmental services, currently under consideration.

NHS Education Scotland ( NES) also worked on improving ASD diagnostic capability across Scotland. Using evidence provided by SIGN 98 they supported professional training through:

  • Partnership funding with the Autism Resource Centre, Glasgow enabling 98 Scottish diagnosticians to be trained over a 3 year period in the Diagnostic Interview for Social and Communication Disorders ( DISCO);
  • Training in the Developmental, Dimensional and Diagnostic Interview (3di) for 43 professionals involved in the assessment and diagnosis of children and young people with ASD;
  • Ninety-seven delegates attending 3 full day regional seminars on promoting evidence-based practice;
  • The commissioning of a scoping exercise on the Autism Diagnostic Observation Schedule ( ADOS) which resulted in provisional agreement about the content of ADOS training including outline specifications for Scottish training materials. Grampian Health Board received funding to develop the recommendations of the scoping.

Addressing information needs

To promote effective working and to improve efficiency a directory of individuals and teams undertaking assessment and diagnosis of ASD in Scotland was produced in 2006 with copies being distributed widely within Primary Care and across the country.

Alongside activities directed at professionals, there was recognition of the importance of parents having information about ASD following diagnosis. NES conducted a national consultation exercise and developed a booklet. This provides parents who receive a diagnosis of ASD for their child with easily accessible, appropriate and unbiased information. In 2006 copies of the booklet were distributed to all diagnostic teams and centres in Scotland. It can also be accessed at: http://www.scottishautismnetwork.org.uk

The Government funded the National Autistic Society in 2006 to develop a complementary information resource, Next Steps, which was distributed through educational settings when a child is believed to have ASD. The pack aims to:

  • increase understanding, knowledge and awareness of autism spectrum disorder ( ASD);
  • ensure that parents, families and individuals with an ASD can access relevant information and services;
  • provide information, advice and support to individuals with an ASD and their carers;
  • help individuals with an ASD receive the support they need to fulfil their potential;
  • provide information on local services that may be available to people with an ASD;
  • improve general awareness of autism and provide advice to health, education and care professionals working in the field.

The Scottish Autism Services Clinical Network was another useful vehicle for sharing information. It fulfilled an important function and was well attended but its activity tapered off due to insufficient funds.

Theme 2: Matching resources to need

Partnership in Practice Agreements

Local agencies were asked to set out their plans for future services development in the 2004-07 and 2007-11 Partnership in Practice Agreements (PiPs). These agreements outlined a broad variety of service development proposals at local level, ranging from appointing a development worker to audit ASD services, to developing specialist care pathways for people with ASD. Some concentrated on developing a short breaks strategy whilst others converted areas within existing day services to make them autism-friendly. In addition, service users were active in delivering training.

ASD Database

A related activity to the national audit was the setting up of a database of people with ASD - again to assist with planning for the future. The Scottish Consortium for Learning Disability ( SCLD) manages the eSay project which collects The same as you? statistics for people with a learning disability and those with ASD. The annual statistics were published in 2009 for the first time by the Consortium. This data is now being collected from local authorities on an individual record basis instead of aggregate tables which will improve data quality and allow more flexible analysis in the future.

Commissioning guidance

Policy and practice guidance for commissioners of health and social care services for people on the autism spectrum [28] was published in 2008 which sets out existing models of good practice to inform service developments in local areas. It is clear that this guidance is appreciated and used at local level to assist them in the planning and commissioning of services.

Partnership in Practice: diagnosis in Fife

Over the last fifteen years in Fife, three specialist NHS-led ASD assessment teams received the majority of ASD referrals for children.

Assessment and diagnoses took place in clinics and the assessment and diagnosis teams consisted of health professionals. Waiting lists had grown to over two years. The West Fife Autism Spectrum Pilot ( WASP) was set up in 2007-8 to investigate the feasibility of local, multi-agency teams of professionals working together to assess and identify children suspected of being on the ASD spectrum. A key focus of the process was to use information gathered in the child's school and community and coordinate the process through the child's school. The major aims of the pilot included:

  • making diagnosis faster;
  • making identification and diagnosis more accessible to parents and professionals;
  • making diagnosis and identification more based in the child's learning context;
  • developing pathways for joint planning between agencies for intervention;
  • involving parents fully in the assessment process.

The pilot ran between October 2007 and June 2008. Twenty primary school pupils (with parental consent) were identified to participate. Schools which the pupils attended were asked to participate in the project and were requested to chair and coordinate meetings. There were 2 main meetings held for each child. The meetings all involved professionals together with the parents. The first meeting was used for introducing the project, agreeing the information-gathering process and the necessary tasks involved for each of the professionals. The second meeting was scheduled approximately 6-8 weeks later. By then professionals had carried out their assessments. The professionals brought their findings to the second meeting to share views and came to an agreed multi-agency position regarding the pupil. The multi-agency team of professionals could agree:

  • diagnosis of ASD;
  • no diagnosis of ASD;
  • no consensus of diagnosis and refer to the NHSASD team for further assessment.

Conclusions from the pilot were that:

  • the feasibility of setting up multi-agency community based teams in schools to diagnose straightforward ASD cases and non ASD cases was confirmed;
  • it was feasible to make decisions about when to refer children to the specialist ASD service; results indicated that referrals to FAST for school aged children could be reduced by 50% if this model was rolled out, with 75% of younger children and 25% of older children being given a definitive decision;
  • a significant impact on waiting lists for ASD diagnosis could be made;
  • professionals and parents involved were able to appreciate the benefits of this model of working in terms of: earlier diagnosis, a more natural assessment environment and improved links to support.

A group was set up to oversee the implementation of the ASD joint care pathway across Fife. A central data base was developed to monitor the service; audit outcomes and validation of the decision-making process. A guidance manual was compiled to provide:

  • clear guidelines for all staff about the ASD joint care pathway process;
  • a clear explanation for parents of the entire assessment / decision process ;
  • exemplars of standardised documentation ( e.g. meeting agendas, screening tools, observation schedules, history-taking forms etc).

A permanent senior administrator has been appointed. An official launch for all parties to raise awareness of the new development has taken place as well as follow up twilight sessions in each area to support the delivery of the new service, address issues raised at local level and take feedback. Finally, an evaluation framework has been developed to identify the impact and outcomes of the process on an ongoing basis.

Pilot Projects

To test how best to match resource to need, the Scottish Government funded a number of pilot projects. These included developing services for young people at the transition from children's to adult services in Highland and creating a specialist day resource in Aberdeenshire offering support, advice and training to users, parents and staff so that individuals with ASD can feel part of their community. Projects were also supported to develop respite and short breaks, to increase the capacity of advocacy organisations to work with ASD and to create Social Employment Firms.

Particularly significant is the creation of one-stop shops which developed innovative adult services in Greater Glasgow (Autism Resource Centre) and in Lothian (Number 6).

The Autism Resource Centre ( ARC) houses a range of clinical and non-clinical staff. It is a partnership between Glasgow City Council, Greater Glasgow and Clyde NHS, the National Autistic Society, the Scottish Society for Autism and Strathclyde Autistic Society, offering the following services:

  • Information Base - advice and information in person, over the phone or through various media, via the information officer; library of current books, articles and service information; computer access to a range of online resources; operation of a duty system so that visitors have access to further specialist support and/or advice;
  • Training - training to all individuals e.g. professionals, carers and clients; a wide range of training options are provided from one day autism awareness training to high level diagnostic training; training is also available on an outreach basis;
  • Adult Autism Service - diagnosis and assessment (via community based clinics); individual & group interventions; support and linking to services; drop-in facility; user-led interest groups;
  • Development Team - strategic planning for autism services; partnership working with mainstream services and care groups; ensuring standards of service delivery for all individuals with Autism Spectrum Disorders; helping Greater Glasgow and Clyde Health Board and Glasgow City Council ensure that they meet national standards through involvement in a range of Parliament/Executive- led reference groups; ensuring consultation and participation for people with ASD.

To date the ARC has received over 1,200 referrals - primarily for diagnosis and assessment. An independent evaluation of the ARC conducted by the National Centre for Autism Studies included surveys of the experience of service users and service providers. The report states "Figures show that a very high percentage of service users who filled in this questionnaire felt they had been listened to and were involved in decisions about their support where applicable. Additionally, 87% of participants felt that their overall experience at the ARC was 'very positive' or 'positive'."

The ARC provides training to approximately 1,500 people per year at a range of levels to a wide range of professionals and carers. Evaluations show that 95% and above of people who attend this training find it be 'relevant' or 'very relevant' to their everyday practice.

In addition, the ARC works closely with Glasgow City Council's Working Group on ASD - which is an elected member led multi-agency group aiming at addressing the needs of all people on the autism spectrum and their families. This group in turn has 3 sub-groups on Employability, Housing and Criminal Justice. In this respect the work of the ARC links very closely into Glasgow's Single Outcome Agreement with the Scottish Government, particularly with the themes of Healthy, Working, Learning and Safe.

In Lothian, a one stop shop for adults with Asperger's syndrome was initially funded from 2005-2008. Autism Initiatives was awarded the tender and is committed to its continuation beyond the grant funded period. The aim is to provide a venue for people with Asperger's syndrome to access a range of services including social activities, specific advice, information and support. Outreach support is provided across the Lothians and there is a training programme for professionals . There is an extensive volunteer programme. There are specific groups for women, men with co-morbid mental health problems and/or offending behaviour and a social group for 16-19 year olds. This service was also externally evaluated.

In terms of benefits the outputs have been:

  • 605 individuals have accessed the service since February 2005 on over 32,000 occasions;
  • Over 20,000 phone enquiries;
  • 180+ volunteers have been involved, over 50 are still active;
  • 2,000+ have attended training;
  • 17,000+ attendances at various social groups

Service users describe outcomes in the following ways:

  • "There is calmness, acceptance, a welcoming feeling. You can come and know it's alright; it's OK to come here. Whatever is happening you can fit in, there is a structure but it's not rigid."
  • "I didn't have enormous expectations, you get used to not having expectations, I try not to set my expectations too high but I am quite satisfied."
  • "Concerns have been absolutely listened to and taken into consideration. There has been no judgement; there is complete acceptance and help."
  • "The trust, care and unstinting support shown to my family has been fantastic - after many years of very sketchy support - finally an organisation who understands."
  • "My son started a college course - something we never thought possible. I cannot speak highly enough of the workers and management they always put my son's needs first, the difference their input has made to our lives is unbelievable."
  • 80% of service users felt positive or very positive about their overall experience;
  • 100% of parents and carers feel that their family member has benefited from the service or support they received.

The benefits in terms of outcomes for local authorities and health boards are:

  • Pre and post diagnostic support provided by No 6 is greatly valued by the local NHS diagnostic service;
  • Training for staff from local authority and NHS and others including voluntary organisations enables more effective ways of working leading to more appropriate care provision;
  • Access to extensive library and information resource for staff;
  • Record of people being successfully supported into employment;
  • Record of people being enabled to commence and remain in Further and Higher Education;
  • Record of tenancies being maintained;
  • Record of mental ill health being monitored and early referral made where necessary;
  • Record of potential offending behaviour being noted and managed.

Crucially, the budget for the service is now made from statutory funding (4 Lothian local authorities and NHS Lothian), contributions from Autism Initiatives and significant levels of fundraising each year. They are also developing associated services for adults with Asperger's syndrome that generate income and can partly offset some of the Number 6 costs. They continue to develop a range of activities within limited resources and to assess which aspects of the service have the greatest impact on the development and maintenance of successful lifestyles.

Local Area Coordination and ASD Co-ordinator/ Lead Officer posts

Local area co-ordination ( LAC) was introduced to Scotland in 2000 following the national review of services to people with learning disabilities (s ame as you?) and is seen as a ground-breaking way to support individuals and families and to strengthen communities' capacity to be inclusive.

The LAC approach promotes the rights of people with support needs to live ordinary lives within their local communities and is focussed on developing a relationship with the individual, the family and communities. The aim is to increase or support inclusion by supporting people to develop their individual capacity and working with communities to develop their capacity for inclusion.

LACs engage with the most isolated people within our communities, in many cases people on the autism spectrum, who may not be accessing social care services. National Guidance issued in 2008 to local agencies to promote further development of local area co-ordination by showing how this role can be pivotal in delivering personalised services and self-directed support [29]. The Scottish Government has also funded a national development post to help support and further develop local area coordination across Scotland.

As well as the LAC approach to service delivery, several ASD Co-ordinator posts funded by Scottish Government were created, for example, in Forth Valley, Borders and Fife to see if having a specialist lead officer would be able to deliver better outcomes for people at local level.

In Fife, it is estimated that some 600+ children and young people are on the autism spectrum, together with approximately 2,630 adults, many of whom remain undiagnosed. The question that is being asked is 'where are they?' with Fife being committed to working closely with this population to ensure that services are coordinated and meet need.

Benefiting from Scottish Government funding for one year, and since funded by Fife Council and NHS Fife, the creation of an ASD Coordinator post in 2008, has helped. Working in partnership with, and influenced by, local support groups, Fife Action on Autism ( FAOA) and PHAD (People with High-functioning Autistic Disorders) (Fife), has assisted in identifying key priorities by undertaking a process described as 'reflect, review, revise and initiate'.

With a clear focus on outcomes for this population and working in partnership with FAOA and PHAD (Fife), a work plan was initially developed by the Co-ordinator which, in turn, influenced content to an ASD Action Plan 2010 - 2012, addressing:

  • Post-school transition and adult services;
  • Diagnostic and post-diagnostic pathways for adults;
  • Criminal Justice / Police;
  • Equality and diversity;
  • Data collation;
  • ASD training and increased awareness;
  • Dissemination of information on local and national developments;
  • Low-level support and preventative options;
  • Increase public awareness of ASD;

Whilst ASD is not explicitly mentioned within Fife's Single Outcome Agreement, the following themes have been identified as being pertinent to meeting local outcomes for those affected:

  • Building a stronger, more flexible and diverse economy;
  • Creating a well educated and skilled Fife;
  • Improving health and wellbeing in Fife;
  • Making Fife's communities safer.

Going some way to meeting these outcomes, the ASD Co-ordinator has supported a number of local initiatives, including:

  • Fife Council Library Service: development of a Static Autism Resource.
  • NHS Fife: development of the Autism Spectrum Community Assessment.
  • Fife Council Social Work & NHS Fife: input into drafting local plans and strategies.
  • Fife Constabulary: host to a criminal justice ASD development event.
  • Development of a local ASD newsletter published 4 monthly.
  • A number of events held and projects initiated to increase public awareness of ASD.
  • Local college: development of a local employment taster scheme - to pilot 2010 / 11.
  • Employment: assisted representatives of local Job Centre Plus in the development of ASD training material.

The post has demonstrated the need for co-ordination across services and will build upon, strengthen and capitalise on existing services.

Representatives of PHAD summarised the benefits as being that 'there is such relief that finally there is someone taking on board all the difficulties and challenges that our families, and people on the autism spectrum, face on a day-to-day basis. The benefits of us working together have created vast opportunities to share our knowledge and good practice with so many others who can make a difference. Creating links on a multidisciplinary level and forming strategic plans which will help to create a chain of continued and much needed valuable and guided support.'

Employment and Training

A natural aspiration for many individuals with ASD is that they should be able to secure meaningful employment and be able to contribute to the economy of Scotland. Many people on the autism spectrum have the ability to do some form of work, but need personalised support to find work and ongoing support to maintain and progress in employment.

The Framework for Supported Employment in Scotland (2010) outlined that this support needs to be personalised and it needs to be consistent. This is particularly critical for people who will have difficulty dealing with change as things will need to be progressed at the individual's pace. Such personalised support may need to be ongoing as, although confidence and self-esteem may improve through participation in the work place, this can be severely set back if things do go wrong.

It also benefits the employer, as well as wider society, by demonstrating positive social inclusion. The increased levels of income can help both individuals and families as long as proper professional welfare rights advice is available at all stages of the process, including when dealing with the various benefit agencies on an ongoing basis. This is a potential pitfall for people with difficulties in communication and who may have literacy/numeracy issues as well.

There is a need for specialist employment provision which should be developed as resources become available. Such provision would work to:

  • Develop specialist knowledge of the condition so that appropriate support can be provided to secure a good job;
  • Provide tailored 1:1 advice, support and guidance that puts the individual jobseeker at the centre and in control of the process;
  • Provide disability awareness to employers, enabling them to value the qualities people with ASD bring to a job and understand the support required to make the job a success.

The Scottish Government is committed to providing more choices and chances for young people and support in moving into positive and sustained post-school destinations. 16+ Learning Choices will ensure that every young person has an effective post-16 transition. The focus will be on encouraging all young people to stay in learning past 16 as the best way of ensuring their long term employability and ensuring that they have the opportunity to reach their potential. The Government appointed a national transitions officer to work with local authorities and partners to support transition pathways for young people who are most at risk of missing out on education and training opportunities, including those with autism.

Theme 3: Standards and scrutiny

A quality standard for ASD diagnostic services

It is undoubtedly vital that people with ASD and family carers have a clear indication of what can be expected from a diagnostic service. To aid this, the diagnosis sub-group of the ASD Reference Group published a quality standard for ASD diagnostic services which also provides a checklist for multi-disciplinary teams providing an ASD service. This has been widely disseminated and used across Scotland.

The quality standard makes it explicit that a quality service should:

  • Take place within the context of a multi-disciplinary AND multi-agency service involving professionals with ASD training;
  • Understand that diagnosis ought to be a process which supports the development and progress of an individual;
  • Be aware of the need to involve both the person with ASD, and parent/carer/partner/independent advocate if applicable, in the assessment and explanations;
  • Recognise and acknowledge cultural differences of all individuals and families;
  • Dedicate sufficient time for assessment in keeping with consensus timeframes;
  • Give individuals of all ages access to a service appropriate to their needs in their locality;
  • Make a diagnosis if appropriate regardless of whether there are statutory services available;
  • Use internationally recognised diagnostic criteria and specify which criteria have been used;
  • Make a full diagnostic assessment including developmental history. In adults the developmental history is not always available but every effort should be made to ascertain it;
  • Use information drawn from observation, standardised interview and clinical experience in a variety of contexts such as home, school, workplace and the community;
  • Identify psychological, physical, social and other needs of the individual as well as making practical suggestions through joint planning of health, education, social work and the voluntary sector, to ameliorate any particular difficulties the individual is facing;
  • Produce a document to state diagnosis, which criteria and tools were used to assess, and describe any co-morbid conditions;
  • Give clear sensitive verbal explanations of the syndrome and provide quality written information;
  • Refer on for any medical or other assessment as appropriate or relevant genetic counselling;
  • Offer a follow-up appointment, preferably face-to-face, for the individual to ask further questions;
  • Offer clear explanations if a diagnosis of autism is not made (and any differential diagnosis) and offer second opinion as appropriate;
  • Provide information about post-diagnostic services such as support groups.

Scrutiny

Her Majesty's Inspectorate of Education ( HMIE) conducted a specific inspection of educational provision for children and young people with ASD across Scotland. [30] This inspection followed an integrated assessment approach using a multi-agency (education, health and social care) team and included consideration of:

  • how far pupils with ASD have access to a broad and relevant curriculum to ensure they are learning;
  • how far pupils with ASD are included and enabled to engage with more socially equipped peers;
  • how expertise is used in schools and why certain interventions are chosen.

The subsequent report highlighted current good practice, identified gaps in provision and made recommendations for the way forward for education. Inspectors found much good practice in relation to the work of education authorities and school and other professional practice that supported pupils with ASD. They suggested more attention needs to be paid to which approaches to learning and teaching actually work for this group of young people. Targets set out in individualised educational programmes needed to have appropriate breadth and level of challenge and that those with responsibility for delivering services to pupils with ASD should ensure consistency in the quality of services provided. They emphasised that teachers and support staff should be provided with high quality training to enable them to meet the needs of pupils with ASD to ensure that these pupils do not miss out on the educational opportunities they deserve.

Services for people with ASD are also included in joint inspections of learning disability services. A joint inspection of services in Ayrshire, bringing together Social Work Inspection Agency, NHS Quality Improvement Service ( NHSQIS), the Care Commission, HMI Education and HMI Constabulary was carried out in 2006 [31]. It recommended that the partnerships publicise their services so that people know what is available, particularly in relation to self-directed support and carer's assessments. Procedures and staff training to support adults should be amended and further improved. They were also encouraged to ensure all action plans enable and sustain independence to promote greater inclusion in the community.

HIS has conducted a programme of visits to NHS Boards from October 2004 onwards and has looked at services for children and adults with learning disabilities in Scotland during 2008-2009 to check how well health services are meeting people's needs. Their findings were published in the report 'Tackling Indifference' which has already been referred to. Its recommendations have been accepted by Government and ways of implementing these are under active consideration.

The then Social Work Inspection Agency inspected all 32 authorities. Within children's services the Agency noted that systems were not consistently well developed to ensure a smooth transition for young people into adult services. Similarly services for adults varied widely. Recently there has been some indication by a few authorities that this area of service is being reviewed.

Theme 4: Staff education and training

An incidental development that coincided with the life of the ASD Reference Group was the publication of a National Training Framework for Autistic Spectrum Disorders (Mackay & Dunlop 2004, referred to here as the Framework). [32] This revealed gaps in the training of professionals involved in the education, health care and support of people on the autism spectrum. This was evident across all professions at all levels. The framework mapped the level of training required by professionals predicated on their role and the extent of their professional contact with people on the spectrum. The framework also addressed the need for parents and individuals on the spectrum to have access to training.

A number of courses were already in place at postgraduate level. It was recognised that undergraduate or equivalent opportunities for autism specific training was less available. As the research informing the development of the Framework highlighted gaps that might be met through Scottish Vocational Qualifications ( SVQ), the Autism Reference Group supported new developments in the range of formal qualifications that could be accessed by those employed in social care. Scottish Vocational Qualifications ( SVQ) are available at various levels of the Scottish Credit and Qualifications Framework ( SCQF). Individuals employed within the social care sector including in management posts are required to have the appropriate award at the suitable level. Consequently a Professional Development Award ( PDA), Certificate in Supporting Individuals with Autistic Spectrum Disorders ( SQF Level 3, SCQF level 7) and Certificate in Managing the Support of Individuals with Autistic Spectrum Disorders ( SVQ level 4, SCQF Level 8) were developed.

A particular need was also identified by the Scottish Autism Reference Group to scope the training needs of Allied Health Professionals (Dunlop and MacKay, 2004). [33][34] This exercise led to NES, NHS Scotland developing an online learning resource which is available through their website. This resource is designed for any professional who is working in the healthcare system at the primary care level ( e.g. General Practitioner; Allied Health Professionals ( e.g. dieticians, occupational therapists, physiotherapists, podiatrists and speech and language therapists), Dentists, Opticians, Public Health Nurses; District Nurses; Practice Nurses; and Dental nurses). It can be accessed on the following link www.nes.scot.nhs.uk/asd. Following an overwhelming positive evaluation in 2009, highlighting multiple visits by almost 2000 users over an 18 month period, the Autism Centre for Education and Research ( ACER) University of Birmingham has been commissioned to fully update the resource.

A continuing focus on training for those working in the field of autism spectrum has led to a project, the key aim of which is to ensure the autism specific content of all training, either award or non award bearing, is of good quality. The Autism Training Accreditation project is a joint project, developed by The National Centre for Autism Studies and The Scottish Society for Autism. The outcome of this 2 year project is the development of training standards that will underpin the curriculum for a customised award that will enable individuals and organisations to gain accreditation of the training they deliver by accessing the Certificate in Training in Autism (Dunlop, Tait and Robinson, 2009). [35]

Theme 5: Research

The Medical Research Council ( MRC) focuses on research on bio-medical issues and the Chief Scientist Office within the Scottish Government takes the lead in working in collaboration with them on a number of ASD specific pieces of research. The Medical Research Council resources can be accessed by the following webpage http://www.mrc.ac.uk/index.htm

More specifically, the ASD Reference Group agreed to fund a retrospective study of a consecutive series of those who have been diagnosed at the Scottish Centre for Autism. This study aimed to capture the developmental history and symptoms of 300 children to better understand the variability within a group of children who receive a diagnosis and the boundary with those children who do not. The study also aimed to identify variables which may predict the need for a diagnostic review in a small minority of cases.

The study provided a rich account of symptomatology and history but lacked standard measurement of global functioning or IQ. While these were not necessary for diagnosis, it would limit the usefulness of the dataset for a future follow up study of developmental trajectories in ASD. The study showed people with ASD had the reliability of a specialist diagnostic service which did not rely on standardised instruments but used a naturalistic play based assessment. The results indicate the importance of both detailed parental account and direct observation of the child. It concluded that a specialist national second opinion service for ASD has a key role in identifying cases complicated by subtle or unusual presentation or co-morbidity. It is likely that there will continue to be a need for tier four services for ASD.

The Scottish Government also held a conference in November 2005 to focus on developments and research in relation to health and autism and to disseminate research findings to health and social care professionals so that they could consider and apply these in their own localities where they thought it appropriate to do so.

The programme included psycho-social interventions and the development of cognitive behaviour therapy; dietary interventions; pharmacological treatments; genetic counselling; improved assessment and diagnosis and the individualised treatment of medical disorders often associated with autism. A full conference report was disseminated widely, to continue the dialogue about health needs in autism in Scotland and to focus on contributing to a broader perspective on how we deliver interventions.

The Scottish Autism Services Network was then created to ensure greater dissemination and exchange of information, specialised knowledge, research and good practice for professionals across Scotland. The network was to:

  • Provide a hub for direction to services for people affected by ASD
  • Provide structure for sharing advice and receiving support
  • Have an internet presence for information provision
  • Consult with users, families and professionals towards responsive development of the network to meet what the ASD community in Scotland needs
  • Work inclusively and in partnership with any relevant organisation
  • Enable partnerships between relevant organisations for training, research and practice
  • Directly influence the knowledge base across multiple professional disciplines.

Wider policy developments

The same as you?

The Scottish Government has long recognised the need to ensure that there is effective service provision in place for those with autism spectrum disorders ( ASD). Going back to 2000 The same as you? review of services for people with learning disabilities [36] made recommendations to improve the quality of life for individuals of people with learning disabilities and extended to include people with autism spectrum disorders, whether or not they also have a learning disability.

The national implementation group ( SAYIG) is co-chaired by the Minister for Public Health. The main aim is to assist people with learning disabilities and those with ASD to be included in community life, in education, in leisure and recreation, in day opportunities and in employment.

However, whilst merging the needs of both groups can sometimes be helpful it can also be counterproductive where, for example, people on the spectrum can be excluded from potential interventions because they do not have a learning disability. For the last 2 years SAYIG has focused on reducing health inequalities and this has clearly benefitted both groups. NHS Boards have submitted 'change programmes' to the Government in which they identify what their local priorities are which range from improving general hospital care to addressing sexual health issues for people with a learning disability and for all those with autism.

There is a strong evidence base that makes this work urgent. A seminal report was the 2004 Health Needs Assessment Report: People with Learning Disabilities in Scotland [37] which highlighted the significant health inequalities experienced by people with learning disabilities and which showed that national health promotion initiatives were failing to address the different health needs that this group have. So learning disability quality indicators were published to coincide with that report which included a range of criteria for measuring the effectiveness of both general and specialist learning disability services.

More recently, SAYIG has been taking forward the recommendations in Scottish Government's health promotion Equally Well strategy which are:

  • that NHS Boards should target health promotion and health improvement action better for people with learning disabilities and others who may need support to access information;
  • that each NHS Board should have a designated senior post responsible for ensuring people with learning disabilities receive fair and equitable treatment from health services, and
  • that the Government should lead development of a framework for regular health assessments for people with learning disabilities in all NHS Board areas.

Much of what underpins this activity is the need to safeguard the interests of those who may be unable to represent themselves. Sadly, Scotland has had fatal accident inquiries in recent years into the deaths of people with a learning disability and the then Minister for Public Health and Sport re-emphasised to Health Board Chairs their obligations to make lasting improvements and act on the findings and recommendations of these inquiries as a matter of urgency.

In 2007, in response to the findings of the 2 Fatal Accident Inquiries, the then Minister asked the Chairs of NHS Boards to submit action plans to address the significant concerns in the delivery of general hospital care for people with learning disabilities. To assist Boards in this task, the Scottish Government invited Boards to submit proposals for funding to help develop services and practices for people with learning disabilities, ensuring consistency and best practice across Scotland. The Scottish Government provided £3m in funding in 2009/10 towards this. A key requirement in receiving the funding was for Boards to designate a senior post with responsibility for fair and equitable care. In NHS Dumfries & Galloway and NHS Tayside, the funding was being allocated to ASD-specific activity.

The learning disability quality indicators have also been reviewed by the then NHSQIS in the Tackling Indifference Report published in 2009 [38]. The key finding of the report is that NHS Boards need to get better at understanding the needs of people with learning disabilities to make sure that they get the healthcare they need. They recognised almost all NHS Boards have taken on the Scottish Enhanced Services Programme in primary care for adults with learning disabilities and there has been good work done to include people with learning disabilities in national screening programmes. Specific learning disability liaison nurse posts have also been central to supporting people with learning disabilities as well as in assisting health staff to understand their needs.

Although historically associated with learning disability, recent research done raises the matter that most of those on the autism spectrum may not have a learning disability. A published research paper by the Social Care Institute for Excellence highlights the various issues faced by many people on the autism spectrum who do not have a learning disability [39]. The key messages from the research paper are:

  • Outcomes for adults with autism spectrum disorder ( ASD) are generally poor. Many people with ASD experience unemployment; mental and physical
    ill-health, discrimination and social exclusion;
  • The evidence base evaluating services for people with ASD is weak;
  • There are significant variations between individual adults with ASD, so that 'one size fits all' practices are ineffective. Evidence suggests that adults with ASD benefit from services, e.g. employment and care which adopt autism-specific approaches delivered via specialist, multi-disciplinary teams;
  • Access to social care is often problematic, compounded by the complexities of the autism spectrum, by other health-related difficulties, the impact of eligibility criteria and the lack of specific services for adults with ASD;
  • The transition period of moving from children's services to those for adults is problematic;
  • Individuals with ASD and additional intellectual disability generally have fewer problems in accessing support, often provided by local learning disability services. However these services may struggle to support individuals with additional or complex needs;
  • The condition and needs of more 'able' individuals with ASD may go unrecognised or be misdiagnosed;
  • More information is needed about individuals with ASD and additional sensory processing differences to enable them to access services;
  • Too few health or social care staff have sufficient expertise or experience for assessing or working with people with ASD;
  • Research is needed to investigate the lower take-up of social care among people from minority ethnic and cultural groups, women and older people with ASD.

The report concluded that a personalised approach based on an understanding of the nature of the condition and individual need, sensitively supported by local specialised expertise and multi-agency collaboration, would appear to offer a better outcome for adults with ASD. A prescriptive 'one size fits all' approach to services, support and facilities is not effective. A prudent investment in research which has practical relevance will lead to an improved understanding of the effects of services.

To conclude, some individuals with autism may never come into contact with services and are able to function well without additional support. Others may benefit from mainstream approaches targeted at improving outcomes for children and young people such as Getting it right for every child, or at those in transition to adult services. Yet others may benefit from policies that have a particular theme such as employment, independent living or self-directed support. Mainstream service or a combination of mainstream services will not suit everyone and specialist support may then be the most appropriate option.

Support for children and young people

Curriculum for Excellence

Curriculum for Excellence [40] prepares children and young people for the challenges of life in the 21 st century. It builds on the strengths of Scotland's education system. It will raise standards for every child. It plans to enable every child to become a successful learner, confident individual, effective contributor and responsible citizen.

It links knowledge in one subject area to another helping children understand the world and make connections. It develops skills so that children can think for themselves, make sound judgements, challenge, enquire and find solutions. For professionals, it enables them to teach more creatively, bringing learning to life; empowering the experts. It reaches out to industry and enterprise to bring real life to learning. For young people, it offers personalisation and choice within a broad curriculum. It balances the importance of knowledge and skills. It's designed to nurture successful, effective, confident and responsible young people.

Children and young people are entitled to a curriculum that includes a range of features at the different stages. Children and young people are entitled to experience:

  • a curriculum which is coherent from 3 to 18;
  • a broad general education, including the experiences and outcomes which are well planned across all the curriculum areas, from early years through to S3;
  • a senior phase of education after S3 which provides opportunity to obtain qualifications as well as to continue to develop the four capacities (successful learner, confident individual, effective contributor and responsible citizen);
  • opportunities for developing skills for learning, skills for life and skills for work with a continuous focus on literacy, numeracy and health and wellbeing;
  • personal support to enable them to gain as much as possible from the opportunities which Curriculum for Excellence can provide;
  • support in moving into positive and sustained destinations beyond school.

Curriculum for Excellence is a curriculum for all, including those children and young people with additional support needs, and wherever learning may be taking place.

Getting it right for every child ( GIRFEC)

Getting it right for every child[41] is the Scottish Government's child-centred approach to children's services, including services which support children with disabilities. It aims to improve working across the boundaries of education, social work, health, police and the third sector so that the child and family experience one team to support them. This approach involves streamlining and simplifying services to remove the complexity and duplication that currently confuse families. It focuses on improving outcomes for children by adopting an approach that is based on partnership, shared language and common tools that support a single system for identifying, assessing, and planning to address children's needs.

Getting it right for every child aims to create a network of support around the child to promote well-being. This network will always include family and/or carers and the universal health and education services. Where there are concerns about children's well-being, there is a National Practice Model designed to help practitioners to pick up those concerns appropriately and deal with them in a timely and proportionate way. Sometimes this can be done through a single agency; at other times, because of the complexity of the child's situation, an inter-agency response will be necessary.

Support for Learning

While most of our children and young people respond well to the opportunities for learning provided by our schools we also know that without extra help some will not benefit fully from education. The Education (Additional Support for Learning) (Scotland) Act 2004 ("The 2004 Act") as amended by the Education (additional Support for Learning) (Scotland) Act 2009 ("The 2009 Act") sets out a framework for supporting children's learning. The legislation aims to ensure that all children and young people receive the additional support required to meet their individual needs and help them to become successful learners. It places a duty on education authorities to identify, meet and keep under review the additional support needs of all pupils, including those with ASD. It promotes collaborative working among all those supporting children and young people and sets out parents' rights within the system.

The 2009 Act makes certain amendments to the 2004 Act and was passed by the Scottish Parliament on May 20, 2009 and received Royal Assent on June 25, 2009. The 2009 Act aims to create a stronger, better system for supporting children's learning. It clarifies responsibilities, establishes new rights for parents to request a place for their child in a school in another education authority, requests for specific assessments and for advocacy and mediation to help resolve disputes and extends the jurisdiction of the Additional Support Needs Tribunal for Scotland.

Children or young people may require additional support, long or short term, for a variety of reasons to enable them to make the most of their school education and be fully included in their learning. The Code of Practice includes some examples but the list is not exhaustive nor should it be assumed that inclusion on the list inevitably implies that additional support will be necessary. It is important for education authorities to consider the needs of the individual child. However, the 2009 Act does deem that all looked after children and young people have additional support needs unless the education authority determines otherwise.

The Scottish Government has produced a Code of Practice which explains the duties on education authorities and other agencies to support children and young people's learning and to provide guidance on legislative provisions and case studies. Education authorities and other appropriate agencies, such as NHS Boards, are under a duty to have regard to the Code of Practice when carrying out their functions under the Support for Learning legislation.

Communications and engagement

Parents, children and young people need to have access to information. They should, where possible, be involved fully in discussions and decisions. Children and young people should have the opportunity to make their views known about decisions that affect them. The Scottish Government funds Enquire, an independent advice and information service about additional support for learning managed by Children in Scotland. Enquire provides information to parents and professionals.

The 2009 Act places a duty on local authorities to publish and provide to all parents of all children with additional support needs, and young people with additional support needs a wide range of information about their arrangements, procedures and policies in relation to additional support needs. If there is a disagreement, authorities and schools need to have clear procedures in place for resolving these including mediation, dispute resolution and finally an appeal to the Additional Support Needs Tribunal for Scotland ( ASNTS). The Act also places a duty on Scottish Ministers to provide an advocacy service available on request and free of charge for children, young people and parents in relation to the proceedings of the ASNTS.

Autism Education Toolbox

The Scottish Government has introduced a number of specific initiatives to support inclusion in education. If we are to succeed in developing and sustaining inclusive practice to meet the needs of children then teachers need to be well prepared and appropriately supported. The Government has supported the development of a National Framework for Inclusion to identify the values and beliefs, professional knowledge and understanding and the professional skills and abilities expected of student teachers and qualified teachers. The Framework promotes the principle that achieving inclusion is the responsibility of all teachers in all schools. Together with the Inclusive Practice Project at the University of Aberdeen it will develop and embed inclusive education principles within teacher training. In addition learning and teaching materials have been developed so that all teachers can learn how to make their learning in the classroom more inclusive for pupils.

The Government commissioned and published an Autism Toolbox [42] in 2009 which was written by a professional multi-agency team. Its aim is both to support education authorities in their planning of services for children and young people with autism spectrum disorders and practice in the classroom.

Personalisation and protection

Self-directed support

People who use care and support services, including people with autism, should have choice and control over their support. They should have as much autonomy as possible over their own decision-making. They should be empowered to tailor flexible support, based on their own needs and agreed outcomes, and not on assumptions. In short, support should be designed around the citizen and not the service.

Self-directed support is a term that describes the ways in which individuals can exercise this greater choice and control. The Scottish Government and COSLA, through their 10-year strategy on self-directed support, are committed to driving a cultural shift, with self-directed options becoming the mainstream approach. The Government is investing £3.6m in 2011/12 to support the strategy. In addition, the Government has consulted on a draft Bill on self-directed support. The draft Bill will say that councils must give the person a choice of options:

  • Having a direct payment
  • Choosing the services you want and asking the council to arrange them for you
  • Letting the council decide what services are right for you
  • A mix of these options.

In addition the Bill will:

  • introduce the language self-directed support into social care law;
  • provide a consistent, clear framework in law, imposing duties on local authorities, to set out the options available to citizens and to make it clear that it is the citizen's choice as to how much control they want to have;
  • widen eligibility to those who have been excluded up to this point and;
  • consolidate, modernise and clarify existing laws on direct payments.

To keep track of the Bill's progress see: http://www.scotland.gov.uk/Topics/Health/care/sdsbill

To find out more about self-directed support see: http://www.selfdirectedsupportscotland.org.uk/

Independent Living

The Scottish Government announced funding for 2008-11 to support work in developing independent living, with the aim of ensuring that disabled people feel valued as individuals and have the same choice, control and freedom as any citizen. Independent living does not mean living by yourself or fending for yourself. It covers every aspect of an individual's life - maximising the opportunities for disabled people to participate fully in society and live an ordinary life - at work, at home and in the community.

The Government, public sector bodies and disabled people's organisations have agreed a Shared Vision for Independent Living and are working together to identify ways to break down the barriers which stop disabled people fulfilling their full potential in areas such as housing, transport, employment and education. The right to independent living is also set out in Article 19 of the UN Convention on the Rights of Disabled People.

The Scottish Government has published 'The Principles of Inclusive Communication: An information and self-assessment tool for public authorities.' [43] Encouraging consistency of approach, it is intended the document be disseminated widely and used to aid people with communication support needs access services effectively and participate, as equal partners, in the development of policy and service improvement.

People with autism spectrum conditions are represented on the national reference group and as part of the Independent Living in Scotland project, to support an understanding of what independent living means for people on the autism spectrum.

Adult Support and Protection (Scotland) Act 2007: Part 1

The Adult Support and Protection (Scotland) Act 2007 ( ASP Act) is a progressive step in responding to harm against those adults most at risk in society. It puts in place modern and strengthened measures to enable greater protection for those adults in Scotland who are most at risk of harm. The Act commenced on 29 October 2008.

The ASP Act defines adults at risk as:

  • individuals aged 16 years or over,
  • who are unable to safeguard themselves, their property, rights or other interests, and
  • are at risk of harm and because they are affected by disability, mental disorder, illness or physical or mental infirmity, are more vulnerable to being harmed than others who are not so affected.

The Act defines harm to include all harmful conduct and, in particular, includes conduct which causes physical harm, conduct which causes psychological harm ( e.g. by causing fear, alarm or distress), unlawful conduct which appropriates or adversely affects property, rights or interests ( e.g. theft, fraud, embezzlement or extortion) and conduct which causes self-harm.

The Act provides greater protection to those at risk of harm through powers and duties to investigate and intervene in situations where concern exists. It requires the Mental Welfare Commission, Social Care and Social Work Services Improvement Scotland, the Office of the Public Guardian, all councils, chief constables of police forces, the relevant Health Board to co-operate in investigating harm and provides professionals with the tools to support and protect adults at risk. It also places a duty on those organisations to co-operate in investigating suspected or actual harm and places a duty on Councils to make inquiries and investigations to establish whether or not further action is required to stop or prevent harm occurring.

The ASP Act is one part of a suite of legislation that can be used to protect people from harm; the Adults with Incapacity (Scotland) Act 2000 ( AWI Act) and the Mental Health (Care and Treatment) (Scotland) Act 2003 ( MHCT Act) are also available and practitioners can use different sections across the legislation which best suit the needs of the adult at risk of harm.

The overarching principle of Part 1 of the ASP Act is that any intervention in an individual's affairs should provide benefit to the individual, and should be the least restrictive option of those that are available which will meet the purpose of the intervention. Together with the overarching principle, guiding principles must be taken account of when performing functions under Part 1 of the Act and these are:

  • that the wishes and feelings of the adult at risk (past and present) are considered.
  • the views of other significant individuals, such as the adult's nearest relative; their primary carer, guardian, or attorney; or any other person with an interest in the adult's well-being or property;
  • the importance of the adult taking an active part in the performance of the function under the Act;
  • providing the adult with the relevant information and support to enable them to participate as fully as possible;
  • the importance of ensuring that the adult is not treated less favourably than another adult in a comparable situation; and
  • the adult's abilities, background and characteristics (including their age, sex, sexual orientation, religious persuasion, racial origin, ethnic group and cultural and linguistic heritage).

Adult protection is a sensitive issue and should continue to be addressed sensitively, endeavouring to strike an appropriate balance between protecting people and enabling them to live fulfilling lives. It sends a clear message that harm and neglect of those adults most at risk is not acceptable. The Scottish Government Act against harm website http://www.actagainstharm.org/ provides further information.

The Protecting Vulnerable Groups Scheme

The Protecting Vulnerable Groups Scheme ( PVG Scheme) [44], has commenced, and this will help to ensure that people who have regular contact with vulnerable groups in Scotland through regulated work do not have a known history of harmful or abusive behaviour. It is a new membership scheme that will replace and improve upon current disclosure arrangements for people who work with children and protected adults. It will strike a balance between proportionate protection and robust regulation. People who are known to be unsuitable to work with children and/or protected adults will not be able to become members of the PVG Scheme and they will be barred from working with one or both of these groups.

The PVG Scheme's system of continuously updating scheme members' records with any new vetting information (conviction information and other information which the police consider relevant) means that people whose behaviour suggests that they may have become a risk to vulnerable groups will be quickly identified. This will enable action to be taken by Disclosure Scotland and by the individual's employers.

As well as strengthening protection for vulnerable groups, the PVG Scheme will reduce bureaucracy. It will be quicker and easier than the current previous disclosure system to use and reduce the need for PVG Scheme members to complete and process a detailed application form every time a disclosure check is required. The workforce will be phased into membership of the PVG Scheme over four years to minimise the administrative burden on employers and to allow plenty time for people to become familiar with it.

It only applies to people who work with children and protected adults and it does not apply to personal arrangements that parents may make with friends and family to look after their child or to work in positions where there is no opportunity to cause harm to vulnerable groups.

Reshaping Care for Older People

The Scottish Government is currently giving priority to ensuring that older people receive the care, compassion, support and dignity they need and deserve. This involves working closely with partners in Health, Local Government and the third and independent sectors to radically reshape the provision of care for older people. We are looking to ensure the highest quality care for every older person, every time. This will require, amongst other things, a step change in the integration of health and social care and in joint working with other agencies and the voluntary sector. Through our public engagement, and in discussion with stakeholders there is a strong sense that for too long structural issues have taken priority: there is a now a determined effort to ensure that from now on the person receiving care and using services, and not organisational boundaries, will be at the centre of delivery the length and breadth of Scotland. The programme of work entitled 'Reshaping care for older people' [45] will link closely with the Health Quality Strategy [46], Dementia Strategy [47], and Carers' Strategy [48].

With regard to autism and Asperger's syndrome, a range of needs in younger and older people will benefit from this work on Reshaping Care. Many (if not most) older people already have one or more long term conditions, so it will make sense to ensure that the Reshaping Care work makes appropriate links to people with differing community care needs e.g. mental health, physical disability, learning disability, and so on.

Critical to this work is the Integrated Resource Framework ( IRF) [49] which has been developed jointly by the Scottish Government, NHS Scotland and the Convention of Scottish Local Authorities ( COSLA). Its purpose is to enable health and social care partners to develop financial and management information which can inform the process of service redesign by clinicians and care professionals, and facilitate the re-alignment of resources to improve patient and population level outcomes, and enable shifts in the balance of care from institutional to non-institutional settings.

Carers Strategy, Caring Together 2010-2015

Recognising the significant contribution made by Scotland's estimated 650,000 unpaid carers, the Scottish Government with COSLA published in July 2010 a new strategy for carers in Scotland. The vision is that carers are recognised as equal partners in care and supported in their own right by statutory and voluntary services. Carers are now, and will remain, fundamental to strong families and partnerships and to resilient and cohesive communities. The key outcomes of the strategy, which are linked to the Government's national outcomes, are:

  • Improved emotional and physical well-being of carers;
  • Increased carer confidence in managing the caring role;
  • The ability to combine caring responsibilities with work, social, leisure and learning opportunities - a life outside of caring and not experiencing financial hardship as a result of caring;
  • Carer involvement in planning and shaping the services and supports required.

Young Carers Strategy, Getting it Right for Young Carers 2010-2015

The Scottish Government with the Convention of Scottish Local Authorities ( COSLA) also published a Young Carers Strategy Getting it Right for Young Carers in July 2010. It is a stand-alone strategy but has key links to the adult strategy, Caring Together, also published in July 2010. This strategy will:-

  • Increase profile of young carers' issues
  • Will encourage partners such as schools to identify young carers
  • Will encourage mainstream services, especially schools and the health service, to support children and young people who are young carers.
  • Ensure young carers will be children and young people first and foremost

Both the Caring Together and Young Carers Strategy are in their second year of implementation.

Social Housing Allocations

The Housing (Scotland) Act 1987, as amended by the Housing (Scotland) Act 2001, sets out the right for anyone aged 16 or over to be admitted to a housing list. Once admitted to a housing list, it is for the social landlord (Local Authority or Registered Social Landlord) to determine the priority of the application in line with their allocations policy. This policy will be based on the criteria identified within the Act that states what should and should not be taken into account when allocating housing.

The Housing (Scotland) Act 2001 introduced legal duties on landlords to encourage equality of opportunity and outcomes and provide services in a way that promotes equality. This is reinforced by the Scottish Housing Regulator's performance standard that all landlords are regulated against.

Current legislation requires that reasonable preference should be given to applicants who fall within the criteria below:

  • Are homeless people or are threatened with homelessness; or
  • Living in houses that do not meet the tolerable standard; or
  • Are living in overcrowded houses; or
  • Have large families; or
  • Are living in unsatisfactory housing conditions.

Social landlords should give reasonable priority in the allocation of their housing to all of the categories outlined above and they are free to decide on what factors they take into account when defining 'unsatisfactory housing conditions'. Factors that are normally taken into account fall into 3 main categories:

  • Mental or health issues;
  • harassment or abuse issues; and
  • social, community or family support.

Some landlords also take social, community and family support into account when allocating houses. This is of particular relevance when dealing with individuals with autism who may rely on family support. A landlord has the flexibility to decide on the priority this category is given when allocating a house.

However, the priority that will be placed on autism in allocating housing will vary between landlords therefore, it is important that the landlord is made aware of the severity of the condition and is engaged with social workers/medical professionals or support agencies from the outset of the application.

A good practice example

Glasgow City Council, with input from housing and autism representatives, have produced a resource for Registered Social Landlords ( RSL) and other housing agencies to inform them of the needs of people with an autism spectrum disorder ( ASD). [50]

In March 2011, the Scottish Government published an online practice guide on social housing allocations to support social landlords to understand their requirements and make use of the flexibilities they have. It also includes real experiences and approaches which Scottish social landlords use to respond to common issues.