Summary

This bulletin analyses the patterns of transitions by people with intellectual disability into and out of school education and their needs for services and assistance. It also presents an overview of prevalence of intellectual disability, associated disabilities and conditions, causes and age at onset of main disabling conditions, and geographic location in Australia.

Over half a million Australians have intellectual disability and a majority (61%) of those people have a severe or profound limitation in 'core' activities of daily living. People with intellectual disability are a major group of users of disability support services in Australia (AIHW 2005, 2007a).

People with intellectual disability encounter special challenges that are different from people with other types of disabilities in a number of important aspects. For example, they have difficulty learning and applying knowledge and in decision making. They may have difficulty identifying and choosing options at key life transition points. They often have difficulty adjusting to changed circumstances and unfamiliar environments and therefore need high support during times of change (Western Australia Ministerial Advisory Council on Disability 2006). Two important life transition points are from home to school and from school to adult life—work, post-school study and participation in meaningful activities.

What the data reveal

In 2003, 588,700 people (3% of the population) had intellectual disability. Most were aged under 65 years (436,200). It is common for people with intellectual disability to have other types of disability, the most common being psychiatric disability.

Almost 60% of people with intellectual disability have severe communication limitations. This distinguishes intellectual disability from other major disability groups for which severe limitations are more concentrated in self-care and mobility. People with intellectual disability are also highly likely to have severe limitations in all three core activities of daily living - self-care, mobility and communication.

However, need for help with core activities may not fully reflect the level of support that an individual with intellectual disability requires to participate in society. Even though they may function relatively well in the familiar routines of self-care and domestic life, and be independently mobile, people with intellectual disability often have considerable difficulty in managing emotions and relating to other people. It is therefore important to also consider the level of support that is needed in non-core activity areas, especially making friendships, maintaining relationships and interacting with others.

If we consider need for support among people with intellectual disability in this broader context, the data reveal interesting findings on the extent to which needs are being met. Across a range of specific activities for which need for assistance was measured in 2003, the two areas with the lowest levels of fully met need for assistance were cognition/ emotion (38% of people with intellectual disability had partially met or fully unmet needs) and communication (36%) (Figure 11).

School students with intellectual disability typically need additional support at school in order to learn and successfully participate in the school environment. This is reflected in their lower rate of participation in ordinary classes, compared to students with other disabilities. In 2003, 45% of students with intellectual disability attended ordinary school classes, compared to 95% of students with physical or diverse disability. For this group of students, learning and social difficulties were far more common problems than other sorts of problems that people with disabilities often encounter, such as participating in sport or physical access barriers (Table 7).

Most school students aged 5–9 years in 2003 with intellectual disability and severe or profound limitation started school life in an ordinary class and remained in ordinary classes for at least five years. Some, however, moved between different school environments. The most common transition was to start off in an ordinary class, then move to a special class or special school (a move made by 29% of a 5-year age cohort of students with severe disability, Figure 7). Around 28% of school students with intellectual disability in 2003 did not receive additional educational support for their disability (Table 8).

On finishing school, people with intellectual disability are far less likely to move into post-secondary education or the labour force than their age peers without disability. In 2003, the labour force participation rate of those aged in their 20s was around 60% and between 34% and 46% for those aged in their 30s, well below the 85% participation by young adults without disability. Transitions out of the labour force were common at ages 30–34 years and onwards, possibly highlighting difficulties for people with intellectual disability in maintaining employment and a need for those who do leave a job to find alternative means of social participation.

Population baseline estimates of unmet demand show that a substantial number of people with intellectual disability need employment and community access services, or alternative sources of support (for example, informal care) to participate in employment and community life (see ' Population baseline estimates of unmet demand for services among people with intellectual disability' ).

Other statistical findings

Prevalence of intellectual disability and associated disabilities

  • About 351,000 people with intellectual disability had a severe or profound core activity limitation (1.8% of the total population), of whom 215,100 were aged under 65 years (1.2% of the under-65 population).
  • The escalating prevalence rates for people aged 75 years and over are associated with dementia-related conditions (AIHW 2006).
  • Psychiatric disability is commonly associated with intellectual disability- in 2003, 57% of people aged under 65 years with intellectual disability also had psychiatric disability.
  • Speech problems were the most common problems reported by people with intellectual disability in 2003 (24%).

Transition from home to school-participation in education

  • In 2003, 82,400 (45%) school students with intellectual disability were attending an ordinary class, while 70,200 (38%) were attending a special class and 31,500 (17%) were attending a special school.
  • About 101,700 school students with intellectual disability who had severe or profound schooling restrictions were either in a special class or a special school.
  • An estimated 68,900 people aged under 20 years with intellectual disability had severe or profound limitations/restrictions with both core activity and schooling, of whom 64,600 were attending school-54% (34,700) in special classes and 45% (28,800) in special schools. These people had more difficulties at school and higher and more complex needs for support than other students with intellectual disability.
  • In 2003, there were high proportions of school students with intellectual disability who had difficulties in learning (66%), fitting in socially (41%) and communicating (31%). These difficulties were far more common than difficulty participating in physical activity and physical access problems.
  • The most common types of assistance received by students with intellectual disability were special tuition (54%), a counsellor or disability support person (28%) and a special assessment procedure (22%).
  • An estimated 28% of students with intellectual disability did not receive special support at school.

Transition from school to adult life

Analyses of age cohorts between 1998 and 2003 for young adults with intellectual disability show that:

  • the proportion who participated in post-school study was very low- about 9% of those who turned 20–24 years in 2003 and less than 5% of those who turned 25 years or over
  • they were much less likely to successfully transfer into the labour force than their age peers without disability
  • considering people with intellectual disability aged 25–34 years in 1998, labour force participation rates dropped considerably over the five years to 2003; the falling labour force participation rates were not explained by increased participation in post-school study or disability day activity programs
  • people aged 15–64 years with intellectual disability, compared with people without disability of the same age, were less likely to complete Year 12 studies, participate in tertiary education, participate in the labour force, to be employed working full-time, or work in the government sector
  • they were more likely to be unemployed, have never married, rely on a government pension or allowance as their main source of cash income, and were less likely to be wage or salary earners.

Need and unmet demand for services and assistance

  • Among the 202,600 people aged under 65 years with intellectual disability and severe or profound core activity limitation living in households, 102,200 people needed help with self-care, 138,400 with mobility and 115,800 with communication.
  • The proportion of people with intellectual disability who needed help with communication was 57%. By contrast, the corresponding proportions of people with other disabilities (and no intellectual disability) were considerably lower: physical/ diverse (3%), acquired brain injury (6%), psychiatric (8%) and sensory/speech (25%) disabilities.
  • Overall, of the 335,000 people aged under 65 years with intellectual disability living in households who needed help with either core or other activities, just half (166,800) had their support needs fully met. Of the 198,500 people who needed help with a core activity, 128,600 (65%) had their support needs fully met.
  • For specific activities, the proportion having their support needs fully met was lowest for cognition or emotional support (62%) and communication (64%).
  • Depending on the purposes and focus of different service programs, population baseline estimates of unmet demand for employment services among people with intellectual disability ranged from 1,400 people (most conservative) to 17,700 people (least conservative) in 2003 (see ' Population baseline estimates of unmet demand for services among people with intellectual disability' ).
  • The population baseline estimates of unmet demand for community access services ranged from 1,400 people (most conservative) to 10,300 people (least conservative) in 2003 (see ' Population baseline estimates of unmet demand for services among people with intellectual disability' ).

People with intellectual disability accounted for the majority of people aged under 65 years who had unmet demand for accommodation and respite services (22,800 out of 26,700).