Understanding the context

Engagement with people with a disability, their families, carers and the broader disability sector is influenced by people’s previous engagement experiences and a range of other personal experiences. The following section includes some brief contextual information to support effective engagement.

• An introduction to disability policy in Queensland
• People with a disability
• Families and carers
• Working with and advocating for people with a disability
• Broader community

An introduction to disability policy in Queensland

The early 1900s

During the early to mid 1900s people with a disability and their families received little or no support from the government or formal organisations. The limited support available tended to be provided by ‘hospitals for the insane’ which failed to differentiate between people with a disability and people with a psychiatric illness. These facilities were often overcrowded and provided poor support options. There were few, if any, options for people with a disability or their families to be engaged in decision making.

The 1950s and 1960s

During the 1950s and 1960s specialist disability services began to develop due, in a large part, to the advocacy of people with a disability and their family members. Services were generally derived from a medical model of care. Institutionalisation was still common. People with similar disabilities were often housed together and opportunities to meet, mix with and learn from people without a disability or with a different disability were limited.

Consistent with the focus on medical approaches, services were provided by the then Queensland Health department, though this responsibility shifted in later years. Two of Queensland’s largest institutions for people with an intellectual disability were the Challinor Centre (accommodating up to 500 adults) and the Basil Stafford Training Centre (accommodating up to 230 children).

A number of inquiries have shown that people living in institutions during this era had a poor quality of life. The institutionalisation of a loved one has also been found to contribute to a range of negative experiences for family members.

The 1960s and 1970s

As the negative effects of large institutions became more widely recognised, again often at the insistence of people with a disability and their family members, alternative models of support emerged with a greater focus on training, skills development and rehabilitation. Sheltered workshops were seen as important providers of training and employment during this period. Rather than large wards, accommodation was often provided in small-group home arrangements, sometimes within the grounds of existing institutions.

Services started to develop individual plans and programs during this era which recognised the strengths and abilities of people with a disability and sought to provide relevant skill development opportunities. People with a disability experienced varied outcomes as a result.

The Paralympics were held for the first time in 1960 and focused positive international attention on the athletic abilities of people with a disability.

The Queensland Cabinet determined in 1966 that people with an intellectual disability should be provided with services separate to those with a psychiatric disability. However, it took many years for this to be achieved.

The 1980s and 1990s

The attention of the broader community was focused on disability issues for the first time in a significant way by the International Year of the Disabled Person held in 1981. Widespread advertising, school competitions and a series of events and initiatives sought to break down barriers between people with a disability and the broader community. During this year, the Australian Bureau of Statistics conducted its first nationwide data collection project focussing on the number of people with a disability in Australia, the nature of their disability and support requirements.

The Australian Government established the Home and Community Care program in 1985. This program recognises the importance of providing a range of supports to enable people with a disability to live in the community. This program also recognises the importance of carers in supporting people with a disability to live in the community and the assistance carers require to enable them to play this role.

The Australian Government commissioned the Handicapped Persons Review in 1985 which led to the preparation of the Commonwealth Disability Services Act 1986. Consultation processes that informed the legislation’s development provided one of the first large-scale opportunities for people with a disability and their families to have a say on the services which affect their lives.

One of the Act’s goals was to reduce the number of people with a disability living in large institutions. The focus heightened plans already underway in some states, including Queensland, to support people to live and work as independently as possible in smaller, community-based residences and in a range of workplaces outside of sheltered workshops. The integration of students with a disability into state schools was also a policy goal during this period. Tailored funding packages which directed funds to individuals with a disability rather than to institutions or organisations were introduced during this time. Advocacy organisations also received direct funding in this period.

The Queensland Government moved to close the last of its large institutions in the mid 1990s. A series of related programs were introduced by both the state and federal governments. As a result, many people successfully transitioned to community-based life and continue to live independently or semiindependently. This was a challenging process with many benefits and limitations.

Some Queenslanders with a disability continue to live in institutions, attend special schools and are employed in sheltered workshops. The majority of those who were de-institutionalised were supported by unpaid carers including family, friends and neighbours.

Establishment of Disability Services Queensland

Disability Services Queensland was established in 1999 as a stand-alone department which provides a range of services to people with a disability and the broader disability sector and focuses on disability issues across the range of Queensland Government activities. Its vision is for a society that values people with a disability upholds their rights and supports their equitable participation in everyday life.

Disability Services Queensland is responsible for:

• the provision of services and supports, both direct services (provided by the department) and those provided through the nongovernment sector
• community infrastructure development
• whole-of-government leadership and coordination.

Current legal and policy frameworks

A number of federal and state government legal and policy frameworks protect the rights of people with a disability and establish government’s commitment to the full participation of people with a disability in everyday life.

Commonwealth Disability Services Act 1986

Enacted to provide a framework which was more flexible and responsive to the needs and aspirations of people with a disability and amended in 2003, the Act seeks to:

• assist people with a disability to receive services and to enable them to participate fully as a member of the community
• promote services which assist people with a disability to integrate into the broader community and complement community-wide services, deliver positive outcomes for people with a disability and raise esteem by promoting positive images of people with a disability
• ensure funding decisions reflect the outcomes of previously funded activities for people with a disability
• encourage innovation in the provision of services to people with a disability
• achieve positive outcomes for people with a disability who are of working age through the provision of rehabilitation services.

Commonwealth Disability Discrimination Act 1992

The legislation was enacted in 1992 and amended in 2005. The Act seeks to:

• eliminate discrimination against people with a disability in a range of areas including work, accommodation, education, access to community facilities and access to goods and services
• eliminate discrimination in law and the administration of federal laws and programs
• ensure people with a disability are able, wherever possible, to enjoy the same rights to equality before the law as other community members
• raise awareness within the community that people with a disability have the same fundamental rights as others within the community.

The Human Rights and Equal Opportunity Commission is responsible for raising awareness of the Act, considering requests for exemptions under the Act, for the development and monitoring of standards and a range of other functions relating to the administration of the Act.

Queensland Disability Services Act 2006

The Queensland Disability Services Act 2006 was passed by Queensland Parliament in March 2006. The Act came into effect on 1 July 2006 and is administered by Disability Services Queensland. The Act recognises and builds on the existing rights of people with a disability outlined in previous legislation stating that:

“All people with a disability have the same human rights as other members of society and should be empowered to exercise their rights.”⁵

The Act explicitly states additional rights of people with a disability. These include rights when using disability services, such as the right to receive services:

• in a way that respects the confidentiality of personal information
• in a safe, accessible built environment appropriate to the person’s needs.

The Act now specifically recognises the right to live a life free from abuse, neglect or exploitation.

The Disability Services Act also encourages all Queenslanders to promote inclusive principles within their own community and requires every Queensland Government department to develop a disability service plan. These plans identify:

• issues relating to service delivery to people with a disability
• ways these issues will be addressed
• how an agency’s disability service plan complements similar plans developed by other agencies.

Queensland Disability Service Standards (2003)

The Queensland Disability Service Standards were developed to ensure people with a disability are able to access quality services which meet their needs and also that people with a disability have a say in how services are delivered. All services, whether delivered or funded by Disability Services Queensland, will be assessed for their compliance with the 10 standards relating to:

• service access
• individual needs
• decision making and choice
• privacy, dignity and confidentiality
• participation and integration
• valued status
• complaints and disputes
• service management
• protection of legal and human rights and freedom from abuse and neglect
• staff recruitment, employment and development.

Assessment is undertaken by an independent certification body and involves input from service recipients.

Queensland Carer Recognition Policy (2003)

The Carer Recognition Policy is a government-wide policy which seeks to ensure carers are recognised, acknowledged and valued both as individuals and as partners in the lives of the person they support. Supporting carers is also seen as a way to support people with a disability. The policy aims to ensure all government agencies are responsive to carers’ diverse needs.

The Disability Services Queensland website contains information about these acts and policies.

Local government

Many local government authorities also have disability action plans in place which outline strategies being implemented within communities to ensure local government service provision makes a positive contribution to the participation of people with a disability in community life.

People with a disability

About one in five Queenslanders ⁶ has a disability. People with a disability are mothers, fathers, friends, neighbours, employees, bosses, customers and community leaders.

The underlying principle to ensure fair treatment is to see people with a disability as equals, part of the diversity of humanity — not part of a group. It is important to recognise individuality and respect rights.

For many people, having a disability is an unavoidable fact of life, not something to be dramatised.

There are thousands of conditions which may lead to a permanent, intermittent or temporary disability. Disability affects different people in different ways depending on age, cause, attitude, family background, opportunity, adjustment to physical, sensory and/or other limitations/factors.

A person’s disability may or may not be visible and may or may not impact upon their ability to be actively engaged in community life. Some people may experience disabilities which are episodic in nature or may vary in their impact over time.

It is not important to know the details of different disabilities, simply to be willing to provide the necessary supports to enable equity of access to information and engagement processes. Keep the focus on what each person can do, not what they cannot do. Deal with each person as a unique individual, with unique needs.

Citizenship

People with a disability have the same rights and responsibilities as every citizen to participate in democratic engagement processes on matters important to them.

Communication

The quality of life of some people with a disability can be substantially improved by increasing opportunities for them to communicate with the people they nominate. This may require communication partners to be open to new communication experiences and trying methods and strategies that may not be familiar to them.

Participation

All citizens have the right to exercise choice about whether or not to participate in a democratic engagement process. For any citizen, a decision not to participate may be a result of a lack of interest, a lack of trust that participation will deliver an outcome, or a variety of other factors. While government agencies must seek to offer opportunities for people with a disability to be engaged, the rights of people not to participate in an engagement process must also be respected.

Families and carers

There are large numbers of people who live with and/or support the 20 per cent of Queenslanders who have a disability. This group includes family members, unpaid carers and informal support people who provide important and valuable links for people with a disability to their communities. Changes to legislation, policies and programs for people with a disability can have significant effects on families and carers.

While caring can be a rewarding and enriching experience, it can also be difficult and exhausting. Many carers find themselves financially disadvantaged, have limited employment or education prospects, experience health problems and generally struggle to take part in social and community life because of the demands of their caring role. ⁷

People who live with and/or care for a person with a disability have an important stake in engagement processes and have valuable insights to share. These insights might be based on their own personal perspective or the perspective of the person they care for. A range of factors influence their ability and willingness to participate and the nature of their contributions.

Desire for change

Many of the reforms described in An introduction to disability policy in Queensland section were implemented as a result of active campaigning by people with a disability’s family members and service providers for better outcomes for people with a disability and their carers. While the gains achieved have been wide ranging, more remains to be done to build an inclusive community. Many family members continue to seek change in a variety of ways to ensure a better life for their loved one.

Physical and emotional fatigue Many families of people with a disability report a range of challenges that generate financial, physical and emotional fatigue. The high demand for respite care and the shortage of both funding and places is a significant short- and long-term issue for the sector. Respite care is a chance for carers and the person they care for to take a break. There are a range of respite options including:

• respite ranging from a few hours a week to overnight care
• centre based day and overnight respite
• if eligible, respite in a residential aged care facility for short periods.

This means the capacity for flexibility is restricted for many people with a disability and their families and carers. This restriction on independence and lifestyle requires constant management and organisation and can affect the ability of people to participate in engagement activities.

The difficulties around securing respite are important when arranging consultation and engagement events. Arranging carer support can be limited by the hours of availability of carers but also, if the consultation event falls outside regular carer hours, the person with a disability or the family member providing the care may incur a cost in hiring a private carer.

In addition to the complexities of daily tasks, some families access a number of services provided by different government departments, and the nongovernment sector. Some families experience frustration in negotiating and coordinating the required services, and coping with waiting lists and service gaps. Other families are unable to access any services, which can also cause frustration and anxiety.

Some families face demanding situations within the family unit, for example, the compounding effect of the need for high-level care by one family member or the effect of mobility restrictions or challenging behaviours on other family members. While the number and range of external supports available to families in which one or more members has a disability have increased, a level of unmet need still exists.

Concerns for the future

In many families where one member has a disability, parents or siblings play a critical role in caring for that person. As people age, concerns emerge as to who will support the person with a disability when parents or siblings are unable to do so. Declining family sizes, increased pressure on families’ work/life balance, growing demands on service providers and reduced levels of volunteering leave many anxious about the lack of options.

Some struggle with the ongoing and future financial costs associated with caring for a family member with a disability. Others fear that if they speak out against the system, their family member may be victimised or service levels reduced. All realise that services are only part of the picture. Ensuring their family member is loved and cared for into the future is a significant concern for most.

Further details about carer participation and consultation can be found in the principles and operational guidelines section of the Carer Recognition Policy described above.

Working with and advocating for people with a disability

A range of people work in either a paid or voluntary capacity with people with a disability, including personal support workers, advocates, medical practitioners, allied health professionals (e.g. speech pathologists, physiotherapists, occupational therapists, dieticians and counsellors), academics and teachers.

It is recommended that engagement processes directly engage people with a disability and also involve a diverse cross-section of workers from the disability sector who have knowledge and experience relevant to the engagement topic. Careful consideration needs to be given about whether or not to engage people with a disability and service providers in the same engagement activity or whether parallel processes might produce more open and useful information.

Diverse experiences

People who work and/or volunteer within the disability sector have diverse skills, professional backgrounds, experiences and values. They also engage with people with a disability in different ways, in different environments and for different periods of time. While all are committed to achieving a better quality of life for people with a disability, differences of opinion may exist about how this can best be achieved using the finite resources available.

Commitment and passion

Working in the disability sector can be rewarding but also physically and emotionally challenging. Anecdotal reports indicate many are drawn to the caring nature of the work. Some staff or volunteers work long hours for relatively low pay with limited opportunities for professional development or career advancement.

Workers say they are often confronted with reminders that the people they work with are not able to enjoy the same access to a wide range of life opportunities and activities they are. Access is often limited for reasons which seem relatively easy to change, e.g. the lack of wheelchair accessible taxis or prevailing stereotypes.

Workers report frustration at the slow rate of change for many people whose needs are ongoing and lifelong. For some, there are no clear solutions to the challenges they face.

Representation and support

Both the federal and state governments fund advocacy organisations and coalitions to ensure the rights of people with a disability are respected and that people with a disability are supported to participate in community life.

The advocate’s role requires that they avoid conflicts of interest and vigorously and loyally promote the rights and wellbeing of people with a disability.

Advocacy organisations work with individuals with a disability to ensure they have access to information, are able to have their say on the full range of topics which are important to them and can participate in decision making which affects their lives.

Advocates also address broader systemic issues to promote and defend the rights and participation of people with a disability. Advocates can play an important role in fostering communication between people with a disability, their families and carers and the broader community.

Championing reform

Many workers within the disability sector are active champions for the reform of services provided to people with a disability. Many disability organisations and networks have operated for a number of years and have accumulated significant knowledge of the effects of various changes on the lives of people with a disability and also of promising trends and research locally and overseas. People who work in paid or voluntary roles in these organisations may be able to contribute a range of historical information to an engagement process, an understanding of the current environment and emerging good practice elsewhere.

Broader community

Many people with a disability report being more ‘disabled’ or hampered by the attitudes of the broader community than by the nature of their disability. It is important to address attitudes and conditions within the broader community to ensure people with a disability are able to be included in daily life as they are and without having to strive to be ‘normal’ or like a person without a disability. This commitment reflects the ‘social model of disability’ which considers the barriers which prevent people with a disability from participating in everyday activities are the factors that disable people. Barriers may include language, attitudes, policies, physical design elements and limited support options to name but a few.

The realities of exclusion

Many barriers continue to prevent people with a disability from equitably participating in a range of community activities. Some people with a disability must plan ahead to ensure basic access for everyday activities, e.g. because of limited numbers, accessible taxis must be booked well ahead of an intended trip, keys to unlock some ‘liberty swings’ (accessible to children who use a wheelchair) must be obtained from councils during office hours.

However, it is recognised that principles of accessibility benefit people with a disability and have the potential to enhance the quality of life for others within the community. Buildings, parks, buses and footpaths which are designed for people with a disability are also accessible to parents with a pram and young children, to the aging population and the wider community.

Websites developed using simple English to ensure they are accessible to people with a disability are also accessible to people with low literacy levels and to people who speak a language other than English.

Houses which are built according to universal design principles are accessible to families with young children, older people with declining mobility and also to a variety of people with a disability. These houses promote access and also reduce the need for retrofitting to accommodate families across the lifespan and can enable seniors to age in their own home rather than transitioning prematurely to supported accommodation. This can represent significant cost savings to families and the broader community.

Employment

A profile of Queenslanders with a disability produced in 1999 showed people with a disability who do not experience restrictions in their ability to undertake schooling or employment, have higher unemployment rates (14.2 per cent) than do people without a disability (8.5 per cent) ⁸.

A Queensland Office of the Public Service Commissioner Report reveals that there is no evidence that people with a disability have lower attendance rates, job performance or are more likely to take sick leave than employees without a disability.

There is also no evidence that employing a person with a disability increases workers’ compensation or other insurance premium costs ⁹. All Queenslanders can benefit from a more inclusive community in terms of increased accessibility, increased opportunities for mutual support and learning and increased productivity and sustainability.

Cultural diversity

People with a disability come from a range of cultural and linguistic backgrounds. Knowledge of and exposure and attitudes to disability vary greatly within and between community groups. Perceptions of disability and ability can sometimes be influenced by cultural factors, e.g. the word ‘disability’ cannot be directly translated in some Aboriginal or Torres Strait Islander languages and so descriptive language must be used, such as ‘a person who does not hear so well’.

In any engagement process it is important to follow cultural protocols and to engage with appropriate people within key groups. When engaging on disability matters, it can be important to understand the effects of cultural meanings and values ascribed to ability or disability, and also community preferences and expectations about engagement.

Aboriginal and Torres Strait Islander communities and disability

The National Aboriginal and Torres Strait Islander Social Survey, Queensland 2002 ¹⁰ reveals that Aboriginal and Torres Strait Islander people in Queensland were more likely to have a disability or long-term health condition than non-Indigenous people. A lack of culturally appropriate diagnostic tools, a history of oral information sharing, the confounding effects of other types of disadvantage experienced by many Aboriginal and Torres Strait Islander peoples and the fact that many Indigenous people with a disability are cared for by family rather than by broader service networks, hinder understanding of the rates of disability among Aboriginal and Torres Strait Islander peoples.

Many Aboriginal and Torres Strait Islander people with a disability experience multiple and compounding disadvantages which reduce their wellbeing including:

• geographic and cultural isolation from disability support services
• lack of culturally specific service and advocacy organisations that are adequately resourced to engage with Indigenous people with a disability, to provide direct services and ongoing mentoring and skills development opportunities to staff
• low levels of cultural awareness among many mainstream service providers
• low levels of support to the parents of Indigenous children with disability
• high levels of poverty and low levels of general health among many Aboriginal and Torres Strait Islanders which make disability “yet another thing to have to deal with in a quest for survival” ¹¹.

Further information on effective engagement with Aboriginal and Torres Strait Islander peoples and people from culturally and linguistically diverse communities can be found in guides listed in Supporting information : Useful Resources.

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• ⁵ www.disability.qld.gov.au/key_projects/disability_services_act/rights.html [accessed 2/02/07]
• ⁶ Australian Bureau of Statistics, 1998
• ⁷ For more information, visit the Carers Queensland website
• ⁸ Disability Services Queensland (1999) Disability: A Queensland profile
• ⁹ Office of Public Service Merit and Equity (2005) Guide to working with people with diverse abilities
• ¹⁰ Australian Bureau of Statistics (2002) National Aboriginal and Torres Strait Islander social survey
• ¹¹ Bostock, L (2004) Surviving the system:Aboriginies and disabilities (DOC, 43.5 KB)