In the last year or so both federal and state governments have affected the availability of specialist services for disadvantaged groups such as the Tenants Advisory and Advocacy Service and services that generally advocate for the disadvantaged. There are many reasons why a person may need an advocate: disabilities, language difficulties, trauma, mental health problems – all of which can affect a person’s decision-making power and ability to speak for themselves. In a socially just and egalitarian society, it is important that these vulnerable people are assisted in the protection of their human rights.
For the last two years I have been working with people with Intellectual Disabilities (ID). On the mild end of the spectrum, it might be very hard to see, when meeting a person with an ID, that they have difficulties in cognition. This group may include people who have been diagnosed, but also a large number of people who do not identify as cognitively disadvantaged or have not been diagnosed.
The International Association for the Scientific Study of Intellectual Disabilities (IASSID) define ID/CD as
“The term intellectual disability is synonymous with other terms that have been used historically to describe individual generalised delays in development and difficulties in achieving independence, such as mental retardation and mental handicap. The term ‘intellectual disability’ used in this context refers to the presence of delayed early developmental milestones and associated delay in intellectual and functional development, such that a person’s capability for self-determination and independent functioning is likely to be significantly lower than that of the average person during their lifetime.” (2001)
Developmental delay and functional impairment often occur in concert with mental and physical health problems. In addition, people with ID/CD often find themselves subject to interventions from family services and child welfare, are more often victims of crime and abuse or involved in the criminal justice system, and are less likely to get the help they need from mainstream services where communication issues, challenging behavioural management problems and biased attitudes exist. Neither are they a homogenous population, with the range of capacities of adult with ID/CD resulting in a range of support needs, although often complex and compounded by the factors cited above (Berrie 2011). Some of the behaviour issues observed in people with ID/CD may include: difficulty understanding abstract and complex concepts; literacy and numeracy issues; challenges with problem solving, planning, memory, information processing; difficulty dealing with emotions; acquiescence and being vulnerable to suggestibility.
To further complicate service provision, some people with ID/CD may not self-identify as such, leading to lack of optimal services or inappropriate service provision.
As a result no one catch-all solution is possible and while some people may cope well in mainstream services, others need specialist service provision that understands their unique needs and can provide the long time frames and individual support required.
This group as being particularly susceptible to having their needs misunderstood or neglected due to the difficulties of cognition and communication they experience. The literature indicates that many service providers in the sector are not trained specifically in working with ID/CD clients, and that recognising ID/CD itself is sometimes a challenge.
I am currently involved in research looking into the capacity, success and challenges faced by mainstream organisations to work with this group within Queensland.
Internationally we know that services still have a long way to go in meeting the needs of clients with IDs. Mental Health service workers, including psychologists, generally receive little training, clients experience high rates of unmet health needs and attend emergency services at higher rates than the general population, many have comorbid mental health and physical health issues, they face prejudiced attitudes from staff, and can sometimes be challenging to deal with. In Family Services, they are sadly overrepresented with high rates of child removal, despite International Conventions that recognise the right of persons with disabilities to have families. They receive little or no sex education and rates of abuse range between 30-99%. Coerced sterilisation is still a human rights issue.
With 3% of the Australian population diagnosed with ID, this is a large group of people that are largely flying under the radar where rights are concerned. We hope our research will contribute to changing that.