Supporting people with autism spectrum disorder (ASD) to obtain employment

Transcription

1 Supporting people with autism spectrum disorder (ASD) to obtain employment Introduction This paper presents information on good practice in supporting people with autism spectrum disorder (ASD) to obtain employment, and captures learning from a National Disability Authority seminar in March 2012, and other relevant resources. The contents of this paper are: A definition of autism spectrum disorder Case Study 1 - The approach used by Specialisterne, a Danish social enterprise, that supports people with high-functioning ASD to obtain mainstream employment in specialist areas where their condition constitutions a strength Case Study 2 - The supported employment model operated by the Autism: Building Links to Employment (ABLE) project, run by the Orchardville Society in Belfast Case Study 3 - The Behaviour Support Services based in the Brothers of Charity Services in Roscommon, that supports people with ASD to manage their challenging behaviours and to obtain employment Recommendations from the Health Service Executive s (HSE) New Directions Report: Review of the HSE Day Services (2012) 1. This report states that providing people with disabilities, including people with ASD, with appropriate person-centred health supports, is key to assisting them to access education and employment opportunities Perspectives on person-centred services for people with ASD and other disabilities as outlined in the HSE s National Review of Autism Services Past, Present and Way Forward (2012) 2 1 Health Service Executive (2012) New Directions. Review of HSE Day Services and Implementation Plan Personal Support Services for Adults with Disabilitieshttp:// 2 Health Service Executive (2012) National Review of Autism Services Past, Present and Way Forward 1

2 Key messages ASD is an umbrella term referring to all conditions on the autistic spectrum, from people who are high-functioning and may require few supports to people who are low functioning and may have high support needs No two people may want or require a similar suite of supports. The personcentred approach enables the individual to decide on the supports and services that are appropriate for them Some people with ASD have the capacity and the skills to perform very complex, detail oriented, repetitive tasks that other people often avoid. People on the high functioning scale of autism with low support needs can achieve meaningful mainstream employment in industries that require this skills-set, with the appropriate person-centred supports Employers who have employed people through the programmes listed in our case studies are reported to have had very positive experiences People on the lower end of the autism spectrum with higher support needs can also obtain meaningful employment with appropriate person-centred supports. It is important to create an expectation for people with ASD and their families that they will obtain employment and participate in society, and to provide them with the necessary supports to achieve these objectives Work is a realistic option for people with ASD Work provides people with ASD with meaningful identity and a pathway to social inclusion Strategic and operational issues to consider These are based on the recommendations of the HSE s Reviews of Adult Day Services (2012), and of Autism Services (2012): Providing people with disabilities, including people with ASD, with appropriate person-centred health supports, is key to assisting them to access education and employment opportunities A whole of government approach, preferably with integrated funding streams, is important to provide people with disabilities with appropriate personcentred supports across health, education, employment People with ASD require streamlined integrated services across the health, education, and other sectors from childhood onwards, to support and facilitate their access and participation in education and training, and to assist their transition into employment. 2

3 Integrated support services can help people with ASD to participate in mainstream society The health sector in Ireland should continue to be responsible for providing health-related supports to facilitate people with disabilities access to mainstream education and employment, and to community inclusion Autism services need to be consistent in terms of the quality of services provided It is important to have indicators to measure the effectiveness of day services and supports in progressing people with disabilities to lead self determined lives Standards to monitor and evaluate the quality of day services for people with disability should be an integral part of service-level agreements with disability service providers Service providers should be trained and qualified to provide appropriate services that meet the range of support needs of people with ASD Government agencies responsible for employment services should work in partnership with specialist service providers that have expertise in providing services for people with ASD A formal interagency structure should be established to enable service providers with expertise in providing services to people with ASD, to share their knowledge on: Developing and delivering information and awareness training for staff providing support services for people with autism Developing and providing information, training and supports to the families of people with ASD Autism Spectrum Disorder Autism Spectrum Disorder (ASD) is currently defined as a condition in which there are difficulties in the following three areas: Impairment in social interaction Impairment in communication Restricted, repetitive and stereotyped patterns of behaviour 3 3 This is the definition of ASD used by the World Health Organisations International Classification of Diseases (ICD) 10 th edition and the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition as 3

4 ASD is an umbrella term referring to all conditions on the autistic spectrum. The difficulties associated with autism can vary across a spectrum of conditions. A person with ASD, who is categorised as high functioning on the spectrum, meets the criteria for autism but will have normal or above average intelligence. A person, who is categorised as low functioning with higher support needs, will have more difficulties with social interaction and communication and will require more supports to participate in every day life. People with ASD may also have intellectual disabilities, Attention Deficient Hyperactivity Disorder (ADHD), motor or sensory difficulties, or display challenging behaviours. 4 Barriers to Employment People across the range of ASD often experience barriers to social inclusion and employment because of their difficulties with communication and social interaction. If a person with ASD has challenging behaviour, for example, handbiting or has additional disabilities, then they face additional barriers to obtaining mainstream employment. The case studies in this paper show that with appropriate supports, people with ASD on the high end of the spectrum can obtain meaningful employment. The case study of supports for those with higher needs shows that personcentred psychological supports can be effective in assisting people on the slightly lower level of the autism spectrum with higher support needs, to: Manage their challenging behaviours Develop and maintain relationships with the families, support staff, psychologists referenced in Health Service Executive (2012) National Review of Autism Services Past, Present and Way Forward 4 This is the definition of ASD used by the World Health Organisations International Classification of Diseases (ICD) 10 th edition and the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition as referenced in Health Service Executive (2012) National Review of Autism Services Past, Present and Way Forward 4

5 Use these relationships to support them to live self-determined lives and obtain employment they wish to have Case Study 1- Specialisterne Enterprise, Denmark Specialisterne, a social enterprise, was established in Denmark in The enterprise was established to support people with ASD to develop their abilities for detailed and complex work and to obtain mainstream employment as specialist consultants in data and information processes. Specialisterne provides training and employment opportunities for people with ASD who are high functioning. People with ASD are referred to Specialisterne through their service providers and apply for positions on their programmes. The enterprise currently employs 20 people in management and staff positions. Staff are trained to provide services for people with ASD. The enterprise also employs 35 people with ASD as specialist consultants. In 2012, 20 people aged 18 plus were on the training and assessment programme. 5 The enterprise uses a person-centred approach to support people with autism into mainstream employment as specialist consultants in software testing, data registration, quality control and information packaging for IT, telecommunications and pharmaceutical companies. Programme participants undergo a five month individual assessment and training programme that supports them to: Develop their individual skills and capacity for specific tasks Develop their social and communication skills Transition into mainstream working environment Developing Individual Capacity A person with ASD often displays one or more of the following capabilities: High levels of concentration Performing repetitive actions with high quality outcomes Excellent attention to detail Ability to spot errors in data, information and in information systems Ability to recognise patterns 5 Sonne, T. (2012). Turning Disability into Specialist Abilities the Specialisterne Case. Presentation at the National Disability Authority Seminar in March 2012 on Strategic approached to employing people with Autism Spectrum Disorder. 5

6 Process optimisation These capabilities are very suited to employment which involves precision, data analysis, or seeing patterns, such as IT and software testing, accounts, or quality control. These are tasks that other employees often avoid. Programme participants are provided with training to enhance these skills Developing social and communication skills People with ASD often have problems with social interaction and communicating with other people. As part of the five month assessment and training process programme participants are supported to develop their interpersonal and communication skills, manage challenging behaviours, and provided with training in life skills, for example, travelling to work, or managing money. Transitioning into mainstream employment People with ASD generally prefer calm environments and following the same routine every day. Change in their routine or environment, for example, transitioning from a training environment to a mainstream work environment can be very stressful. Throughout the assessment and training process programme participants are provided with short work placements to assist them to transition into a mainstream work environment. They are provided with ongoing supports from Specialisterne staff to assist them to make this transition. Evaluation and profiling After the assessment and training period each programme participant meets with their support team to evaluate and discuss their progress. A profile is created for each programme participant that details their ideal job and matches it with their skill set. Depending on the outcomes of this process programme, participants are employed as specialist consultants by Specialisterne, or they are supported to obtain employment with other companies and organisations in the public and private sector. Employer supports Specialisterne also provide employers with training and supports to provide work placements and/or employment for people with ASD. Early Intervention-Youth Education Programme In 2009, Specialisterne established a youth education programme in Denmark for teenagers and young adults, aged between 16 to 25, with ASD, who are high functioning. The objective of this programme is to provide young people and their families with an expectation that they will work and participate in mainstream society. This programme provides them the skills and experience to pursue further education and employment. 6

7 Young people on this programme receive training in: Traditional curriculum subjects Maintaining their mental and physical health and well being Developing their social and communication skills Provided with work placements in different companies and organisations. Case Study 2 - Supported Employment Model ABLE Project, Orchardville Society, Belfast The Orchardville Society in Belfast is a voluntary organisation that specialises in providing training and employment services for people with intellectual disabilities. In 2009, the Society established the Autism: Building Links with Employment (ABLE) project in response to: A lack of specific services for young people and adults with ASD Increase in referrals of people with ASD from mainstream and specialist schools, the Belfast Health and Social Care Trust and the Department of Education and Learning in Northern Ireland The Orchardville Society runs the ABLE project in partnership with the Belfast Wide Partnership and NOW. The project will end in 2013 and is financed through Big Lottery Funding. The project s objective is to create the expectation in young people and adults with ASD, that they will obtain employment in a mainstream environment and participate in society. The project provides employment based services for young people and adults aged between 16 and older with ASD that have been referred from special and mainstream schools and other services. These people are on the higher to middle end of the autism spectrum scale. Supported Employment Model The project uses a supported employment model to assist people with ASD to obtain and retain work placements and employment. Project staff are trained to provide appropriate supports to people with ASD. The project also uses a person centred approach. An Individually Customised Programme is developed for each project participant to: Determine the type of job they want 7

8 Assess their skills and competencies via vocational job profiling and job analysis. Participants are provided with precise instructions to assist them to complete the job analysis Provide them with training and supports to assist them develop their individual capabilities and skills Prepare them for mainstream work environments by supporting them to develop their social and communication skills and training them in workplace etiquette and life skills, for example, managing money Provide them with supports to manage any challenging behaviours Transition effectively into mainstream employment using the place and train model. Participants are provided with short taster work placements to prepare them for long term work placements and full time employment Progress participants into mainstream employment by providing them with ongoing training and supports and linking them into peer support networks through the project s online User Forum Employers providing work placements and/or employment opportunities and their staff receive awareness training and ongoing supports. Progress to date The project is in its third year and has supported people with ASD to obtain work placements and employment in different work environments that include customer service, information technology, data processing, retail and manufacturing. See Table 1 for project progress to date. Table 1 ABLE project s progress to date 6 As detailed in Table 1the project has exceeded some of its overall targets. The Current Targets Project End Target (Year 4) (Year 3) Special education referrals Mainstream education referrals Adults Number of work placements Number of jobs Number of Employees People impacted Haddock, M. and Lynas, L (2012) ABLE. The Idea, the Delivery, the Result. Orchardville Society Belfast. Presentation at the National Disability Authority Seminar on Strategic approached to employing people with Autism Spectrum Disorder. 8

9 project s end target for 2013 was to provide 60 work placements for people with ASD. The project has already provided 94 work placements for people with ASD by Case Study 3 - A Working Alliance - The Behaviour Supports Service, Roscommon The Behaviour Supports Service in Roscommon focuses on providing people with ASD across the spectrum, with person centred psychological supports to assist them to: Develop and maintain close relationships with their families and support structures, for example, a psychologist, support worker etc. (These relationships create a working alliance that supports the person with ASD to determine the life they wish to live and to obtain the type of employment they wish to have) Manage their challenging behaviours The Behaviour Supports Services uses the following psychological supports and frameworks to support people with ASD to live self determined lives: Social Role Valorisation Theory Positive Behaviour Support Framework Social Role Valorisation Theory Social Role Valorisation Theory is concerned with the effects of social devaluation on the well being of people that society regards negatively, for example, people with challenging behaviours, people with ASD, people with disabilities. The theory focuses on reversing the effects of social devaluation on the individual by: Raising their consciousness of their individual abilities Challenging the individual s and society s stigmatising beliefs and perceptions about themselves Providing them with examples of the valued roles they play in society and their capacity to form and maintain meaningful relationships with their families and other people in society Promoting and supporting the individual to participate in society The Behaviour Support Services uses this theory to work with people with ASD to: 9

10 Increase their self confidence and self esteem Increase their awareness of how they are valued by their families, the support services, and their communities. The valued role they play in mainstream society Increase their awareness of the importance of developing and maintaining close supportive relationships with their families and support staff. These relationships play a vital role in assisting people with ASD to realise their potential and to recognised the valued role they play in society Positive Behaviour Support Framework Environments with high levels of stress and stimuli are often not suitable for people with ASD and may trigger challenging behaviours. The Positive Behaviour Support Framework is used to support people with ASD to manage their challenging behaviours using the following key steps: Low Arousal. Creating a calm (low arousal) environment for the person with ASD, to enable them to concentrate on the different techniques that will enable them to manage challenging behaviours. A calm environment also supports a person with ASD to develop a rapport with the psychologist Rapport Building. The psychologist builds a rapport on a routine basis with the person in order to provide them with person-centred, individualised supports Predictability. Supports are provided in a routine manner and are applied to practical real life situations Communication. Assisting a person with ASD to develop their communication and social interaction skills and to develop close relationships with others Incentives/Reinforcement Strategies. To ensure that people remember to use the skills and strategies they have learned to manage their behaviour McClean and Grey (2012) 7, from the Behaviour Support Services, conducted research on the effectiveness of the Positive Support Framework on 4 people with ASD with severe challenging behaviours. These people were attending the Behaviour Supports Services. The research was carried out over a three year period. 7 McClean, B. and Grey, I. (2012) An evaluation of an intervention sequence outline in positive behaviour support for people with autism and severe escape-motivated challenging behaviour, Journal of Intellectual and Developmental Disability. 37(3), September 2012, pp

11 The research outcomes showed that the incidents of severe challenging behaviours were reduced to zero when each of the 4 people was provided with: A calm environment where they could concentrate on techniques that assisted them to manage their challenging behaviours The opportunity to develop rapport and relationships with the psychologists the supports staff and their families The results of the research suggest that people with ASD with severe challenging behaviours can obtain work if: They have established close relationships with their families and support staff, that provide them with appropriate supports that assist them to transition into a job that they choose They are transitioned into a calm work environment with appropriate supports that enable them to work and interact with their colleagues to the best of their abilities. A calm work environment also provides them with the opportunity to progress and develop Creating a Work Alliance The key focus of the Behaviour Support Services is to provide people with ASD with person centred supports that will assist them to develop and maintain relationships with their families and the wider community. These relationships form the basis of a working alliance that effectively supports the person to live a self determined life, including obtaining meaningful employment. The Behaviour Support Services conducted recent research on the effectiveness of the person centred approach in supporting people with ASD and intellectual disabilities across the spectrum to lead self determined/independent lives people with intellectual disabilities were chosen from 6 Brother of Charity Services Centre in different regions. These people were chosen because they wished to lead more independent lives. The research was conducted over a 15 month period. At the end of the research: 20 people (43%) were reported as living self determined lives in the community An additional 3 people (7%) were reported to be in the final stages of transitioning into self determined living 8 McClean, B. (2012) A Working Alliance: Person-Centred Planning and Employment. Behaviour Supports Service, Brothers of Charity Services, Roscommon. Presentation at the National Disability Authority Seminar on Strategic approached to employing people with Autism Spectrum Disorder. This seminar took place on 22 March 2012 in the National Disabiliy Authority s Pavilion 11

12 The research showed that the primary reasons the person-centred approach was effective in assisting people to live self determined lives was because of: The working alliance that had been created between the person with a disability, their support structures and the wider community Vision based person centred planning that focused on the person s capacity to live the type of life they wished to live Meaningful Work The objective of the person centred supports provided by this service is that each person with ASD is assisted to decide on the type of work and activities that are meaningful to them. They are supported to engage in work that interests them and that gives them a sense of purpose and identity. This work also provides them with the opportunities to develop and maintain social relationships with the wider community. Effective Supports The three case studies of Specialisterne, the ABLE project and the Behaviour Support Services have demonstrated that the following person centred supports are effective in assisting people across the autism spectrum to obtain meaningful work an participate in society. These supports include: Focusing on the person s individual capacity and ability and supporting them to develop these abilities Increasing their self confidence and self esteem by providing them with valued social roles Providing the person with an integrated suite of supports in personal development, social and communication skills, managing challenging behaviours and employment related skills Assisting people with ASD to develop and maintain close and supportive relationships with families, and support staff and the wider community. Creating an expectation for people with ASD and their families that they will obtain employment and participate in mainstream society Additional elements that facilitate the effective delivery of person centred supports are: Project/programme staff are trained in providing appropriate supports to people across the spectrum of ASD 12

13 Employers and their staff receive awareness training in ASD. They also received training in supporting a person with this type of disability to work in a mainstream environment Outcomes All three case studies stated that: People with ASD reported the positive benefits of having meaningful employment, for example, having the economic means to participate in mainstream society Building partnerships or working alliances between people with ASD, their families and the wider community, including employers is an important part of supporting people with ASD into employment. Employers perspectives Specialisterne and the ABLE Projects stated that employers reported positive experiences of employing people with ASD. They were impressed by the individuals professionalism, motivation and commitment to the jobs. Employers working with the ABLE project stated that the supports and training they received to assist them to employ people with ASD were invaluable Current Service Provision in Ireland In 2012, the Health Service Executive published the New Directions Report. Review of the HSE Day Services. Adult day services are provided in Ireland by the HSE and by a mixture of voluntary services. This report evaluated the effectiveness of day services for adults with disabilities in supporting them to progress and participate into mainstream society and obtain meaningful employment Breakdown of Service Users According to the New Directions Report (2012), 25,302 people with different disabilities currently use adult day care services 13

14 Table 2: People with disabilities using adult day care services Type of disability Number of people and % People with ASD 357(1%) People with Intellectual Disability 13,720 (54%) People with Mental Health Issues 7,301 (29%) People with Physical and Sensory Disabilities 3924 (16%) Total 25,302 (100%) Table 2 shows that only a small percentage of percentage people with ASD use day care services. The New Directions Report (2012) states that this data reflects the fact that day services and service providers have only recently had the capacity and skill to diagnose autism as a distinct disability. As a result, adults with autism are included with other disability groups. There is currently no precise data about the number of people with ASD actually using adult day care services. Type of Services Provided People with disabilities can avail of different services based on their capacity and support requirements. Table 3 details the primary day services that 25,302 people with disabilities currently use. Service use is not broken down on the basis of different disabilities. 14

15 Table 3: Primary Day Services that 25,302 people with disabilities use Name of Service Description of Service Number and (%) of users with disabilities Day Activation/Activity Provides support and therapeutic 13,269 (52%) services designed to meet the needs of people through individual plans. These include training in: independent living skills, personal development, health-related and therapy supports, for example behavioural therapy and mental health supports Active Community Provides supports to assist 4,607 (18%) Participation/ Inclusion people to participate in mainstream, community programmes and activities, for example, sport, social events etc. Day Care Programme Provides high support services primarily focused on providing a health care service to meet the specific needs of individuals 3,618 (14%) Sheltered Work Programmes (Commercial) Rehabilitative Training Supported Employment Sheltered Work Programmes (Therapeutic) Education Programmes People with disabilities are supported in the day centre to produce products for external vendors. Service users may or may not receive allowances or discretionary topup payments. Programmes designed to equip participants with basic personal, social and work-related skills that will enable them to progress to greater levels of independence and integration in the community Paid employment in the open labour market with ongoing supports. Day centre provides participants with constructive activities such as cooking, arts and crafts. No employment contracts with external companies Service users may or may not receive allowances or discretionary topup payments. Programmes funded by the Department of Education and Skills to enhance day services 2,826 (11%) 2,789 (11%) 1,773(7%) 1,749 (7%) 1533 (6%) 15

16 Name of Service Description of Service Number and (%) of users with disabilities Sheltered Employment An enterprise is set up specifically to employ people with disabilities, funding from the HSE. Workers have a contract of employment and receive the minimum wage. 164 (1%) Source: Health Service Executive (2012) New Directions. The data in Table 3 shows that: The majority of people with disabilities using day services (52%) use the therapeutic and supports services provided by the services. There appears to be no participation with the mainstream community and activities. 18% engaged with mainstream activities with their local communities Only 7% obtaining supported employment in mainstream work environments Autism Review - Employment recommendations The strategic and operational changes recommended by the New Directions Report (2012) to support people with disabilities to obtain employment and participate in society are reflected in the HSE s National Review of Autism Services Past, Present and Way Forward (2012). This report also recommends that if people across the ASD spectrum are to be supported into mainstream employment: They need to be provided with appropriate person-centred health supports, to assist them to access education and employment opportunities Integrated services in health, education, training etc for people with ASD need to be more consistent in terms of the quality of services provided and the method of service delivery. A system needs to be implemented to monitor and evaluate the quality of services being provided. This system should also measure the outcomes these services achieve in terms of supporting people with ASD to transition into further education and mainstream employment opportunities A whole of government approach with integrated funding streams is necessary to provide people with disabilities with appropriate person centred supports across health, education, employment etc 16

17 Additional Recommendations The National Review of Autism Services (2012) also made the following recommendation regarding the future provision of autism specific services: People with ASD require streamlined integrated services across the health, education sectors from childhood onwards to support and facilitate their access and participation in education and training services and to assist their transition into employment. These services should also support people with ASD to participate in mainstream society Service providers should be trained and qualified to provide appropriate services that meet the range of support needs of people with ASD Government agencies responsible for employment services should work in partnership with specialist service providers that have expertise in providing services for people with ASD A formal interagency structure should be established to enable service providers with expertise in providing services to people with ASD, to share their knowledge on: Developing and delivering information and awareness training for staff providing support services for people with autism Developing and providing information, training and supports to the families of people with ASD The New Directions Report (2012) and the National Review of Autism Services (2012) have made similar recommendations regarding the necessary strategic and operational changes that need to be implemented if people with disabilities are to be effectively supported to obtain meaningful employment. These key recommendations are also reflected in the Value for Money and Policy Review of Disability Services in Ireland, published by the Department of Health in Conclusion The National Disability Authority s 2006 report A Strategy of Engagement: Towards a Comprehensive Employment Strategy for People with Disabilities advised that employment measures must be comprehensive across the spectrum of abilities and degrees of impairment, and in addressing the range of disabilities (physical, sensory, intellectual, mental health, multiple disabilities 17

18 The case studies and policy recommendations summarised in this paper illustrate some of the key elements of an integrated and person-centred approach to enable people with ASD obtain meaningful employment A whole of government approach Integration between support systems and services that come under different departments Employers play an important role in assisting people with ASD to obtain employment. They should be included in this process and provided with the necessary supports and training to recruit, employ and retain people with ASD 18

19 References Department of Health (2012) Value for Money and Policy Review of Disability Services in Ireland, published by the Department of Health in Haddock, M. and Lynas, L (2012) ABLE. The Idea, the Delivery, the Result. Orchardville Society Belfast. Presentation at the National Disability Authority Seminar on Strategic approached to employing people with Autism Spectrum Disorder. This seminar took place on 22 March 2012 in the National Disability Authority s Pavilion Health Service Executive s (2012) National Review of Autism Services Past, Present and Way Forward Health Service Executive (2012) New Directions. Review of HSE Day Services and Implementation Plan Personal Support Services for Adults with Disabilitieshttp:// directions.html McClean, B. (2012) A Working Alliance: Person-Centred Planning and Employment. Behaviour Supports Service, Brothers of Charity Services, Roscommon. Presentation at the National Disability Authority Seminar on Strategic approached to employing people with Autism Spectrum Disorder. This seminar took place on 22 March 2012 in the National Disabiliy Authority s Pavilion McClean, B. and Grey, I. (2012) An evaluation of an intervention sequence outline in positive behaviour support for people with autism and severe escapemotivated challenging behaviour, Journal of Intellectual and Developmental Disability. 37(3), September 2012, pp Seligman, M. (2003) Authentic Happiness: Using the New Positive Psychology to Realise Your Potential for Lasting Fulfilment. USA Sonne, T. (2012). Turing Disability into Specialist Abilities the Specialisterne Case. Presentation at the National Disability Authority Seminar on Strategic approached to employing people with Autism Spectrum Disorder. This seminar took place on 22 March 2012 in the National Disability Authority s Pavilion 19