Ten years ago, Steve was told where he would be living, who he would be living with and the sheltered workshop where he would work on a production line. He went to bed at 7pm because the evening staff shift finished. He had his meals at the same time every day from a menu that rarely changed. He had few friends, all from within the service that supported him, and little contact with his family. People who spent the most time with him were paid to do so. Each day he would be given a peanut-butter sandwich and a five-dollar note in an envelope, his daily allowance.
Today, Steve is in control of his own disability funding and his own life. He lives semi-independently in a rental unit he chose, with a non-disabled flat mate and weekly drop-in support. He works at the local shops four days a week and goes out with friends on days off. Some of his new friends are people without disability with common interests whom he met through his new job. His family are no longer discouraged from visiting. He eats and sleeps when he wants to, cooking his own meals. There is no longer a set menu he is required to follow, except he chooses pizza every Friday night.
Steve is a friendly 45-year-old man with Down syndrome and intellectual disability. According to the Association of Intellectual and Developmental Disabilities (AAIDD) guidelines (Luckasson et al., 2002) the diagnosis and classification of ‘intellectual disability' requires assessment in three areas: cognitive functioning, adaptive behaviour and support needs. This was not how Steve was originally assessed.
Steve's story is a common one that is being told increasingly over recent years. Although the deinstitutionalisation movement saw large numbers of people, primarily those with intellectual disability, move into community group homes, many of these group homes were run and colloquially known as ‘mini-institutions'. More recently, several major shifts in thinking and practice have occurred that have led to stories of empowerment such as Steve's, though much work on the implementation of these approaches remains to be done.
A person-centred approach has empowered Steve to now enjoy a better quality of life. John O'Brien is often credited with the origination of Person-Centred Planning (not to be confused with Rogerian Person-Centred Therapy). Person-centredness aims to put the person in the centre of service design and decision making, providing supports individualised to the person and aiming to empower the person to achieve his or her own goals and dreams. Person-centred ideals have found their way into government and organisational policies, although implementation has not always mirrored philosophy.
Individualised funding was essential for Steve to implement his ‘co-resident' arrangement, where his non-disabled flat mate supports Steve to get ready in time in the mornings and ensures Steve gets his epilepsy medication in exchange for free rent. The provision of individualised or self-managed funding is a growing movement internationally and within most Australian States. This approach goes by many names, and there are several different ways it can be implemented. In essence, it involves the person with disability being in control of their own supports. Whereas previously most disability services were ‘block-funded' and the service organisation was in control of staffing, rosters and programs, self-managed approaches see funding given directly to the person or managed through an intermediary. The person then is able to choose his or her own staff, set the roster and, hopefully, have more flexibility and innovation in how support is received. International studies have shown this approach to be more cost effective with better outcomes (e.g., Leadbeater, Bartlett, & Gallagher, 2008).
A few decades ago, supports for people with disabilities were run and controlled by medical professionals. The focus was on diagnosis and medical treatment. Briefly, the social model, a reaction to predominant practices, focuses on systemic barriers, attitudes and the built environment as factors that create disablement. The International Classification of Functioning, Disability and Health (ICF) (WHO, 2001) biopsychosocial model provides a broader framework to the understanding of human functioning, by seeking to embrace both the medical and social models of disability, as well as taking into account the impact of psychological functioning. For example, severe depression or chronic pain can be disabling, as much as a set of stairs for a wheelchair user.
A few years ago, Steve's depression became so severe he wasn't able to work and was referred to a psychologist. The psychologist identified the best support for Steve was not medication, but rather integration into the community, increased choices, new friendships and varied social activities. The psychologist coordinated appropriate service referrals, and implemented psychosocial strategies around friendships and family interactions. Steve is now enjoying his life again.
Five accomplishments for human services to aim towards (O'Brien, 1989)
Although the diagnosis of intellectual disability has not changed, there has been a significant shift in the way in which intellectual disability is now classified, which is according to levels of support needed rather than intelligence quotient bands (mild-moderate-severe-profound). Unfortunately, many services, psychologists and government bodies are not aware of this change and in practice the old labels are still commonly found and applied. These labels can be misleading, as some people classified as having ‘mild intellectual disability' may have behaviour of concern and require significant support, whereas a person with ‘severe intellectual disability' may actually be able to function quite well in society with the appropriate supports. Where for Steve the ‘moderate intellectual disability' label previously funnelled him into living in a group home, the new classification ‘intellectual disability and moderate support needs' focuses on the supports necessary for Steve to rent his own home.
New assessment tools used to classify disability
Whilst still controversial and being debated internationally, new approaches to classification and practice have created the need for new assessment tools that focus on support needed, as opposed to deficits, incapacities or disabilities. Steve previously had many assessments that showed inabilities to count, tell the time and manage his money. His support needs assessment identified that Steve needs a ‘dollar more strategy' to enable him to shop independently, weekly support with his budget and prompting from his co-resident to remember appointments.
The AAIDD developed a support needs assessment tool called the Support Intensity Scale (SIS) (Thompson et al., 2004) which is being used predominately in the USA. In Australia, psychologists at the Centre for Disability Studies (CDS), an organisation affiliated with the University of Sydney, developed the Instrument for the Classification and Assessment of Support Needs (I-CAN) (Arnold et al., 2009). The I-CAN is based on the ICF and AAIDD supports concept. It focuses on assessing and describing the supports the person needs to achieve their person-centred dreams and goals. The I-CAN is a web-based assessment tool that is scored automatically and generates a report online, with cost estimation and needs comparison functionality. The assessment utilises a semi-structured group interview format, with domains across ‘Health and Wellbeing' (such as Physical Health, Mental and Emotional Health, Behaviour of Concern etc.) and ‘Activities and Participation' (such as Communication, Self Care and Domestic Life, Interpersonal Interactions and Relationships, Community, Social and Civic Life etc.).
The I-CAN has been successfully tested with people with various disability types including mental illness (Riches et al., 2009). Currently at version 4.2 and under ongoing research and development, a recent study showed the I-CAN predicted clinician judgements of support needs with a Spearman's coefficient of 0.98 (n=49).
Steve's I-CAN assessment identified his dreams to go surfing around Australia, to keep a pet dog, and buy ABBA's box set. Steve would need some guidance and direction to achieve these dreams, as well as daily prompting to maintain self care, occasional support with relationships, weekly budgeting support and occasional support around physical and mental health.
Life is improving for many people with intellectual disability like Steve, but there are still major inequities and challenges. Psychologists need to be aware of the changed practices in assessing and classifying intellectual disability, and the benefits of a person-centred support needs approach.
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Arnold, S.R.C., Riches, V.C., Parmenter, T.R., Llewellyn, G., Chan, J., & Hindmarsh, G. (2009). I-CAN: Instrument for the Classification and Assessment of Support Needs, Instruction Manual V4.2. Centre for Disability Studies, Faculty of Medicine, University of Sydney, Australia. (www.i-can.org.au)
Leadbeater, C., Bartlett, J., & Gallager, N. (2008). Making it Personal. London: Demos.
Luckasson, R., Borthwick-Duffy, S., Buntix, W.H.E., Coulter, D.L., Craig, E.M., Reeve, A., Schalock, R.L., Snell, M.E., Spitalnik, D.M., Spreat, S., & Tasse, M. (2002). Mental Retardation: Definition, Classification and Systems of Support (10th ed). Washington DC: American Association on Intellectual and Developmental Disability. (www.aaidd.org)
O'Brien, J. (1989). What's Worth Working For? Leadership for Better Quality Human Services. Georgia: Responsive Systems Associates. (http://thechp.syr.edu/rsa.htm)
Riches, V.C., Parmenter, T.R. Llewellyn, G., Hindmarsh, G., & Chan, J. (2009). I-CAN: A New Instrument to Classify Support Needs for People with Disability: Part I. Journal of Applied Research in Intellectual Disability, 22, 326-339.
Thompson, J.R., Bryant, B., Campbell, E.M., Craig, E.M., Hughes, C., Rotholz, D. A., Schalock, R.L., Silverman, W., & Tasse, M.J. (2004). Supports Intensity Scale: Standardization and user's manual. Washington, DC: American Association on Intellectual and Developmental Disability. (www.siswebsite.org)
World Health Organization. (2001). The International Classification of Functioning, Disability and Health (ICF). Geneva: Author. (www.who.int/classifications/icf/en/)