Count Me In

A better future for everyone

Contents

Count Me In at a glance...... 4

Economic and Community Foundations...... 8

Participation and Contribution in all aspects of life...... 13

Personalised Supports and Services...... 22

Keeping the process alive and committed...... 34

Implementing priorities and pathways...... 36

Endnotes...... 37

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Many people helped in the formation of Count Me In at this vision: people with disability, their families and carers, community members, a glance service providers and government representatives (see endnote 2). As part of the process, they thought about the Vision shape of society now and in the future, the forces that divide us, the particular All people live in welcoming challenges facing people with disability communities that facilitate citizenship, from Aboriginal and culturally diverse friendship, mutual support and a fair backgrounds, the strengths of people go for everyone. with disability and the barriers confronting them. Information was gathered through: Western Australia will look substantially • a series of monograph papers which different in 15 to 20 years time. There explored future social, economic and will be many more people who have a environmental trends and their effect disability, most over 65 years of age, and on West Australians many more senior citizens than younger people (see endnote 1). West Australians • discussions with people with disability, will live in changed economic, social and their families, carers and service environmental circumstances. With this providers future in mind, Count Me In sets out 13 • workshops to develop priorities. priorities to shape a good future for people with disability, their families and carers Together participants identified 13 that will also benefit many other West priority areas that need to be tackled for Australians. Western Australia to be a truly welcoming and affirming place for all. These are At the heart of Count Me In lies the vision discussed in the main part of this of a Western Australia where all people document, together with the pathways live in welcoming communities that for achieving them. These priorities and actively promote citizenship, friendship, pathways fall under three complementary mutual support and a fair go for everyone. areas – Economic and Community It involves a long-term process with Foundations, Participation and multiple changes across the board – to Contribution and Personalised Supports housing, transport, community attitudes, and Services. Making strong progress in education, employment and technology, each of these areas is vital to achieve the as well as service delivery in rural, remote vision for people with disability and for all and metropolitan areas. West Australians.

4 Economic and Participation and Contribution Community Foundations Everyone in Western Australia has Financial security, well-planned a right to be involved in all aspects communities and affordable, of life and their unique contributions accessible housing are fundamental valued. Developing communities to wellbeing. Without them, people which genuinely welcome, respect cannot enjoy a satisfactory standard and value the involvement of people of living, have a safe and enjoyable with disability will lead to communities home, move around easily, and that welcome many others including participate and contribute in people from culturally diverse and communities of their choice. Aboriginal backgrounds and people who are senior citizens. Economic and Community Foundations have always been a priority to people Developing greater community with disability and the Disability Services participation and contribution will Commission. Currently one in five people help Western Australia to fulfil its report that they have a disability. In 15 responsibilities under the United Nations years, this figure is expected to increase Convention on the Rights of Persons to around one in four people with most with Disability. The Convention requires of the increase due to people, mainly full inclusion of people with disability baby-boomers, developing disability after in all aspects of society including the 65 years of age. Acting now to establish creation of conditions for people to well-planned communities and housing live independently. The process used that everyone can live in makes good to develop the Convention involved a social and economic sense – it will enable high level of participation from people most people with disability and senior with disability and their representative West Australians to continue to participate organisations, with continuing successfully in community life throughout participation expected and encouraged their lives. The challenge for Count Me as implementation and monitoring occur. In, however, is to harness the energy and Count Me In, in turn, will foster strong commitment of Commonwealth, State and and ongoing participation in all levels of Local Government agencies responsible planning and monitoring. for these areas to bring about positive change.

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People involved in developing Count Me Personalised Supports In emphasised that personalised supports and Services and services must:

West Australians with disability who • be responsive, contemporary and are under 65 years and who need innovative assistance with essential tasks of • keep pace with demand daily living receive most support from family members and community • increase choice and control for people networks. They are also eligible for with disability, their families and carers personalised supports and services • be delivered in ways that create provided by the Commission or by more opportunities for community non-government organisations. These participation and contribution supports and services can be critical to maintaining everyday wellbeing, a • develop the capacity of people safe, healthy lifestyle, to participating with disability, their families and in communities and to ensuring carers to participate in all levels of economic and community rights are organisational decision-making upheld. • ensure the needs of people with disability who have complex or high Although one in four West Australians is needs remain clearly in view and likely to have a disability in 15 years, only effective responses are developed 14 per cent of these people, will need personal assistance in self-care, mobility • respond to the unique needs of people or communication, making them eligible with disability who experience early to access the personalised supports ageing or who are reaching senior years and services funded or provided by the • continue to foster a range of ways to Commission. While people who have support families and carers a severe or profound (see endnote 3) level of disability also gain considerable • create more responsive approaches benefit from developments in the two for people living in rural and remote other areas of focus – Economic and areas. Community Foundations and Participation The remainder of this document describes: and Contribution in all areas of life – it is of critical importance for many to receive • each of the three areas of focus in ongoing personalised support and services turn, together with their priorities and to complement the other two areas. pathways • the process for implementing priorities and pathways • ideas for keeping the Count Me In process alive and invigorated over the long term.

6 with disability who are people with complex responsive supports responses to people Lifelong security for approaches in rural families and carers and high needs for Strong, supportive and remote areas partnerships with Innovative and Collaborative Collaborative Responsive support ageing Economic security Supports and Personalised Disability Future Directions Count Me In Services Well-planned and accessible Economic and Foundations Community communities and Contribution in all aspects Participation designed housing of life Universally- Secure employment in Access to health and Enabling information mainstream services Lifelong learning in Lifelong learning inclusive settings and technologies meaningful work communities Welcoming

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participation more difficult and creates Economic and social exclusion. community Count Me In identifies three priority areas to create solid economic and community foundations foundations: • economic security Economic security • well-planned, accessible communities • universally-designed housing (see endnote 4). Well-planned and accessible communities Priority Area: Economic security Universally-designed housing People who participated said… In a society as affluent as Australia, economic security, a place to call home, We want to get good jobs and have and well-planned, safe, accessible good pensions. To have money. community living should be available (There is) not enough assistance to get to all. Our society is highly unequal, a house or apartment, to get a loan. however many people with disability, their families and carers are among the People with disability and their carers worst off. Forty five per cent of people have to compete for funds, with the with disability in Australia live in or near first call on funds being the people poverty – more than double the OECD who need them most… It’s not a rights average of 22 per cent. As well as model of funding. income restriction, they face extra costs relating to housing, transport, aids and Climate change (signals) the end of equipment. Without concerted action abundance as we know it. Changes this situation could remain stagnant or to agriculture, economic effects, deteriorate. recessions and increasing insurance Between now and 2025 we will premiums mean higher prices which experience higher costs of energy, fuel, always hit the poorest. building and food, which will affect all West Australians and create widening gaps between rich and poor. Financial hardship increases personal and family stress and can undermine physical and emotional health. It makes community

8 Economic security is a fundamental requirement for all West Australians. No Pathways to build one can have a good life without enough economic security money to meet housing, energy, food and medical costs, and enough money to enjoy Pathway 1 – Promote the benefits to friends, activities and recreation. Many people with disability, their families, individuals rely on the disability support carers and the Australian Government pension which remains significantly below of providing adequate funds for the the poverty line, others find it challenging growing numbers of people with to get and keep rewarding and well-paid disability by adopting social insurance jobs, family and carers work less hours schemes, for example, a no-fault than others or do not work at all. accident insurance scheme and a national disability insurance scheme. There is little possibility, under these circumstances, to make investments and Pathway 2 – Recognise and offset build wealth. People with disability are the additional and ongoing costs more likely to be renting than owning their associated with having a disability by: home and are often unable to obtain or afford homes in the areas that are close • complementing the earnings of to work, transport, family, friends and people with disability, their families activities. There are numerous ways in and carers who are working with which this situation could be radically adequate levels of government improved. No single measure will be assistance, for example through sufficient on its own, and cooperation pensions, taxation incentives, is needed between levels and sectors concessions and fee relief of government in conjunction with • ensuring that people with disability, employers and private enterprise. their families and carers who don’t work achieve economic security with adequate levels of government assistance, for example through pensions, concessions and fee relief.

Pathway 3 – Increase the ability of people with disability, their families and carers to own homes through shared equity partnerships.

Pathway 4 – Increase economic security through taxation incentives for disability trusts, disability savings plans, investment in accessible housing and assistance with investment planning.

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Well-planned communities linked to Priority Area: streamlined transport are fundamental Well-planned and to creating accessible, welcoming and accessible communities stimulating places to live. Good planning means designing new communities and renewing older communities in ways that People who participated said… enable people to move around easily and safely – in their homes, outside their If we can’t drive we want a safe public homes, on footpaths, in cafes, getting to transport system. schools, parks and other amenities. It means more accessible public housing People with disability consistently in all areas of Western Australia. It also report that they do not have the same means creating new and different styles opportunities as others to participate of accessible housing, both public and in community life. They face daily private, to suit the needs of people with barriers such as being unable to disability, large and small families and physically access a building, hear people of different ages and cultural what is said, read print, climb stairs, groups. understand signage or communicate effectively with other people.

10 Pathways to well-planned and Priority Area: Universally- accessible communities designed housing Pathway 1 – Develop well-planned and accessible communities by: People who participated said…

• extending planning initiatives which Universal design hasn’t come into its currently integrate town planning, own yet. Philosophies of universal housing and transport including design will need to impact on how Liveable Neighbourhoods, the local government does business, for Model Scheme Text and Directions example, to enable people to stay in 2031 their communities. • involving people with disability, their families and carers in planning My parents live in a retirement village and development and were not allowed to have a wheel in shower or an accessible toilet… • creating a common vision for town so I could visit and for their future planners, developers and architects. requirements. Their driveway has a very steep gradient as do a lot in this village. Pathway 2 – Establish, promote and enforce stronger town planning codes and zoning classifications including Creating buildings, products and the Residential Design Codes: environments that are useable and effective for everyone is vital if all West • to support the development of Australians are to live with security and accessible communities and ease. To achieve this, the principles of universally-designed housing universal design need to be applied to • to enable greater scope for private and public housing as well as the developers to make innovative use surrounding community. of land to achieve more accessible These measures need to be communities. complemented by energy-efficient house Pathway 3 – Create greater access to construction. Global warming threatens the buildings and facilities by promoting basic elements of life for people around widespread understanding of and the world – access to water, food, health, compliance with the Access to and use of land and water environment. Premises Standards. We know that Western Australia is likely to experience increased temperatures, Pathway 4 – Harness the growing decreased rainfall, increased sea levels, numbers of senior West Australians, droughts, bushfires, storms and tropical who have a personal investment in cyclones. Given this, people with disability, ageing services, to advocate for well- their families and carers may well face planned and accessible communities. increased costs of energy and food, more life-threatening events if communication systems fail, and a general exacerbation of health problems. Designing housing for energy efficiency as well as universal access is vital for their future.

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Pathways to universally- Pathway 6 – Invite high-profile designed housing building companies and redevelopment authorities to develop Pathway 1 – Ensure a high percentage affordable universal and climate of public and private housing control designs for public housing incorporates universal and climate and ‘off-the-shelf’ options for private control design which are affordable to homes. everyone. Pathway 7 – Provide tax and Pathway 2 – Increase the number superannuation incentives for of public housing with universal companies and people who invest in design located in all areas of Western housing with universal and climate Australia to minimise waiting lists and control design. provide greater geographical choice for people with disability. Pathway 8 – Recognise and support universal design initiatives Pathway 3 – Incorporate universal by the Australian Network for design into a wider range of Universal Housing Design and other housing styles, for example in high- organisations. rise apartments near the hub of communities, in cluster housing and in inter-generational housing for people with disability, their families and carers who want to co-locate for caring, cultural and other reasons.

Pathway 4 – Promote universal and climate control design in housing as having long-term social, financial and other benefits for people who want to live in their homes for many years.

Pathway 5 – Increase education in universal and climate control design through the Housing Industry Association of Western Australia and other significant bodies for architects, town planners, builders, designers and developers.

12 Participation and People who participated said… contribution in Those contributing to the formation of Count Me In look to a time when all aspects of life people with disability are totally included and welcomed in mainstream community life and their contributions Welcoming communities and strengths recognised. A time when: • People with disability are valued Lifelong learning in inclusive and contributing members of the settings community, not a marginalised or ‘special’ group that requires ‘specialised responses’. Secure employment in • People with disability will be meaningful work engaged and embedded in their local community. They will make a meaningful contribution, will have relationships and friends, make Access to health and will their own choices about big and mainstream services small issues/decisions in their lives. • People with disability are afforded Enabling information and full citizenship. Citizenship is the technologies ultimate measure.

For this to happen considerable change is necessary. Five priority areas are singled out: • welcoming communities • lifelong learning in inclusive settings • secure employment in meaningful work • access to health and mainstream services • information and enabling technologies.

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Priority Area: Pathways to Welcoming communities Welcoming communities

Pathway 1 – Strongly support People who participated said… individuals, families and carers who want to develop the skills and To achieve inclusive communities confidence to: … we need real leadership to get beyond the initial reaction of rejection, • be future leaders and champions of alienation, difference and the ‘other’ to community change be scape-goated. • participate in all levels of political Inclusion can’t happen by itself, and agency decision-making. it needs to be planned and made – Promote the sustainable. As able and disabled Pathway 2 responsibility of community members people get to know each other, the to support, welcome and include exclusion that comes from a sense of people with disability, their families difference might fall away. and carers by:

Much of the discussion about community • helping West Australians inclusion has a local focus, but the broader understand what it is like to have public arena – where considerable barriers a disability, the challenges of continue to exist – is just as important participating in community life, and (see endnote 5). As well as community the benefits to communities who education, there is a need for individual are inclusive capacity building so that people with • providing whole-of-community disability can actively participate in political education about the responsibilities processes and control the development of of West Australians to include policies and programs that affect them. people with disability under the United Nations Convention on the Rights of Persons with Disability.

Pathway 3 – Build the capacity of communities to support, welcome and include people with disability, their families and carers by: • working with local governments to ensure local groups include people with disability

14 • funding inclusive initiatives Priority Area: undertaken by local groups on Lifelong learning their own or in partnerships with in inclusive settings disability groups • supporting community networks, People who participated said… advocacy groups and individuals who build the capacity of The most important thing to remember communities and help individuals is to take care of the whole person with to participate disability. For example, think about their • representing the unique needs of education and… plan for the future. Aboriginal people and people from culturally diverse backgrounds Education is a key to inclusive who may experience additional society… Inclusive classrooms from disadvantage in relation to K-12 taught by teachers who come inclusion from university (and) equipped with multi-level teaching skills, will build • working with communities to healthier, valuing and welcoming develop ways to assist families and communities. Encouragement for carers in their caring role, including young people to finish Year 12 and the facilitation of networks to enter further education can only counter isolation. broaden networks and opportunities to join the workforce in meaningful Pathway 4 – Ensure individual employment with independent skills advocacy, self advocacy and other and personal networks. supports are available to foster community participation, with particular assistance available to those who face considerable challenges in joining community life: for example people who have need for intensive, everyday medical support, people with multiple disabilities, people who are unable to speak for themselves in the community without assistance and people with complex and challenging behaviour.

Pathway 5 – Continue to develop innovative strategies to promote participation for people with disability in sport, recreation, tourism, transport, culture and the arts.

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Education plays a key role in creating an inclusive society. Schools, universities, Pathways to lifelong learning in community courses and other learning inclusive settings environments provide people with skills, knowledge and qualifications. They Pathway 1 – Support lifelong learning also foster personal confidence and for children, adults and seniors opportunities to build new relationships with disability commencing in early and interests. In turn, personal and social childhood and progressing to school, confidence helps in other areas such as colleges, universities and beyond. getting and keeping a job. Pathway 2 – Identify and examine the However, barriers for people with real and perceived barriers to inclusive disability persist. There are administrative learning and devise strategies to hurdles, shortfalls in staff with specialist address and overcome these barriers. training, and a lack of sustained support, particularly at tertiary level. Given the key Pathway 3 – Continue to develop role of education in building citizenship, resources to educate and inform it is vital these are overcome. Particular staff, parent bodies and student attention also needs to be given to organisations associated with all those who face the double challenge educational settings about disability of disability and other forms of minority and inclusive education. status, in particular people from Aboriginal and culturally diverse backgrounds (see Pathway 4 – Use information endnote 6). technologies and distance learning to facilitate lifelong learning and In brief, education is a priority area that promote the many new opportunities must be championed over the long technology has and will create in the term regardless of economic, social future. and resource pressures to provide non- inclusive education. Pathway 5 – Develop more innovative ways for people with disability to participate in universities and colleges over their lifetime.

Pathway 6 – Promote inclusive schooling as a key way to foster positive relationships between children which will build more inclusive work, recreation and relationships in other areas throughout their lives.

16 Pathway 7 – Promote effective Priority Area: Secure transition planning at key points in the employment in meaningful lifelong learning process and provide work support to address the emotional and practical challenges that arise during transition. People who participated said…

Pathway 8 – Ensure the unique If your son or daughter requires a educational needs of children and reasonably high level intervention, adults with disability from Aboriginal you might say to yourself it’d be a and culturally diverse backgrounds are better option to pump for a State-run identified and addressed. day options program that might get us 25 hours a week than to risk open Pathway 9 – Acknowledge principals, employment that might get us eight… teachers and other leaders who That’s a real barrier. embrace inclusive and contemporary approaches to education and lifelong If we are having trouble getting a learning. good job – we want the government to help us. Pathway 10 – Engage champions of inclusive approaches to encourage Inclusion is a good idea but the reality communities, school and educational is different. There’s a lack of awareness, centres to embrace inclusive lifelong understanding and acceptance of learning. diversity. Acceptance needs to filter through schools and workplaces. It requires a shift of mindset.

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A job is one of the most significant roles in most people’s lives and provides Pathways to secure economic security, self-esteem, friends employment in meaningful work and ongoing learning and development. Pathway 1 – Ensure children with Many people with disability want a job but disability attend regular schools may not be confident to tackle interviews, wherever possible and receive strong work routines and environments. Others encouragement and preparation for experience being rejected at interviews employment including mentoring from due to having a disability and needing people with disability and established extra support at work. Still others face careers. barriers in securing a job that uses their expertise and gives them the same Pathway 2 – Increase the incentives opportunities for career progression as for people with disability, their families work colleagues. and carers to work by improving salaries and by complementing the There are many structural barriers to the earnings of people with disability, their labour force participation of people with families and carers with adequate disability. The split of responsibilities levels of government assistance between three Commonwealth through pensions, taxation incentives, departments and between Commonwealth concessions and fee relief. and State programs creates confusion and inflexibility. Specialist support for Pathway 3 – Continue to raise those attempting to access employment awareness in school, community and from tertiary studies or from state-funded workplaces of the contribution and alternatives to employment is limited. This capacity of people with disability as is crucial as once people are participating employees. in state-funded alternatives they are Pathway 4 – Enable people with unlikely to move to employment. On the disability to compete for jobs and other hand, many families find that open career advancement based on expertise employment compromises their capacity and ability and to receive appropriate to plan for their child and other family levels of technological and other members if the hours and supports are support. not secure. Alternatives to employment, or day options, are then considered more Pathway 5 – Provide career planning attractive, with the risk that that young and employment advocacy for people person may find her or himself increasingly with disability, their families and locked out of the mainstream workforce. carers. School preparation, employer Pathway 6 – Provide additional and commitment and flexibility and getting the culturally appropriate assistance to right types of support are therefore key people from Aboriginal and culturally pathways to moving forward. diverse backgrounds who may experience double disadvantage when seeking and maintaining employment.

18 Pathway 7 – Provide taxation and Priority Area: other financial incentives to employers Access to health and who adopt positive employment practices. mainstream services

Pathway 8 – Support the employment People who participated said… of people with disability by: • limiting government procurement People with disability have the right to of services to companies that receive the same quality of services as employ people with disability others in the community – this includes appropriate health and medical • setting an increased target (for services. The lack of knowledge and example up to 20 per cent) for the understanding of the needs of people number of people with disability with disability within the health and employed across all government medical professions is evident. agencies, and encouraging local governments to do the same. We need to get good health care that is right for the person and their culture. Our family is from a Chinese background. Chinese culture is different from Western culture, even when it is about health. We use a mixture of medicines and treatments.

One of the main signs that people with disability are being truly included in Western Australia is when health, mental health, education, justice and other government services respond to people who have a wide range of disabilities, want and need. The Disability Access and Inclusion Plans required of each public authority are central to achieving this goal. The strong voice of people with disability, their families, carers, and the support of community networks and service providers in the disability sector is also key to driving this approach.

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Pathways to health and Pathway 3 – Collaborate with mainstream services government agencies to develop effective service responses to acquired Pathway 1 – Ensure that mainstream disability including: services increasingly respond to • Foetal Alcohol Spectrum Disorder, the needs of people with disability, in particular for Aboriginal children their families and carers through strengthening Disability Access and • Acquired Brain Injury through Inclusion Plans, and by working with motor vehicle accidents and drug the Human Rights Commission and and alcohol use the West Australian Equal Opportunity Commission. • other conditions that are likely to develop in people with disability Pathway 2 – Improve the access of as they live longer, such as people with disability to quality health, Alzheimer’s disease. allied health, dental and related care by: Pathway 4 – Coordinate effective and timely service responses between • providing improved information, disability services and mainstream education, training and ongoing agencies for people with disability who support to healthcare professionals also have: • arranging ways to share and • challenging personal or aggressive transfer information about people social behaviours with disability across departments and jurisdictions • mental health disability • providing practical and advocacy • involvement with the justice system support for people with disability, • ongoing and intensive medical their families and carers who want needs. assistance to access mainstream health and related services • improving service portability between states and territories • ensuring culturally responsive services are available to people from Aboriginal and culturally diverse backgrounds.

20 Priority Area: Pathways to enabling Enabling information information and technologies and technologies Pathway 1 – Ensure that people with disability can easily access and People who participated said… afford new developments in assistive technologies and the technical support The use and further development needed to maintain their effective use. of technology will increase people’s independence as they age. Pathway 2 – Ensure that people with disability have access to Opportunities (exist) to get people library, internet and other sources of ‘online’ and (for them to) get to information. This includes assistive know virtual communities. Every computer technology made available home where people with intellectual in libraries, schools, universities, disability live should be provided with workplaces, community settings and a computer and access to the internet. at home.

Assistive technological aids are very Pathway 3 – Encourage involvement in expensive. A very convenient and web-based interest groups and social portable scanning device that plugs networking groups as an important way into the computer and can be used to to achieve connection to others. scan documents… is $4,000. A handy little magnifier that is portable and will Pathway 4 – Improve the benefits of freeze information on the screen… assistive technology through better is $1,200. Software packages can be matches between individual needs and hundreds of dollars. equipment and by training people in their effective use. Rapidly developing information, communication and assistive technologies Pathways 5 – Champion improvement have the potential to open up a range of and innovation in assistive technology opportunities to people with disability. as a key way to promote participation Computer technology and other electronic in community life. aids, for example, have the potential to – Explore the use of redress functional limitations and greatly Pathway 6 medical and rehabilitative technologies increase independence and socialisation to improve health, wellbeing, at home, in the workplace and in other and independence in home and community settings. Making sure these community. technologies are affordable, adapted for use by people with different types of disability and made readily available to borrow or purchase is vital.

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Personalised People who participated said… Supports and None of us really have the answers. I would like to see that by the time my Services son is in his mid-20s he would already be on the path to living somewhere away from home, on his own with Innovative and responsive people to help him or with other supports people with disability who need help to do things. If that is what people want they should be able to choose it. Wherever people live it should Lifelong security for people be a safe place… There should be with complex and high needs security and support for people to give for support whatever help is needed, and to check and make sure that everything is all right. Strong, supportive partnerships with families Personalised expertise, support and and carers services can be critical to maintaining everyday wellbeing and a safe, healthy lifestyle for people with disability who Responsive approaches in have a severe or profound level of need. rural and remote areas Personalised supports and services complement and actively support the other two areas of focus within Count Me In – the role played by mainstream Collaborative responses to services and community groups in people with disability who are welcoming and involving people with ageing disability and the role played by the built environment in creating places which all people can use. Most of the personalised supports and services for people with disability in Western Australia, their families and carers are provided by the Commission, funded disability non-government organisations and parent, individual and community support groups. Although these are specialised supports specifically developed for people with disability, it is

22 imperative that they work with mainstream Despite these figures, less than a fifth and local supports to increase of those estimated to be eligible access opportunities for people with disability personalised supports and services. It to live and participate in everyday is important to ensure that, in addition community activities in environments to providing culturally responsive used by all. support, these services work together with mainstream and other services that It is also essential that personalised may be involved with families to address supports and services are culturally pressing health, education, justice and responsive to the diverse needs of people other issues. with disability, their families and carers from culturally diverse and Aboriginal A number of challenges face the disability backgrounds. Western Australia has a sector in providing personalised supports highly diverse population, with a high and and services. These include funding rising proportion of people from culturally restrictions, difficulties recruiting qualified diverse backgrounds, including many staff and high labour turnover. The five from new and emerging groups. More priorities described under this area of than a quarter of the population were focus stress the importance of achieving born overseas, more than 170 different better support with the funding and languages are spoken and more than human capital that exists and grows each 100 different faiths are practised. year. In relation to Aboriginal people, significant This could be achieved through developing and enduring differences exist between innovative approaches, responsive Aboriginal and non-Aboriginal people on partnerships with individuals, families and all main indicators of health and socio- carers and collaborative initiatives between economic disadvantage including life- all combinations of stakeholders across all expectancy, health, education, financial areas of Western Australia. security and employment. In addition, Aboriginal people have a higher incidence of disability for all disability types, about 38 per cent of Aboriginal people aged over 15 years report that they have a disability and nine per cent report a severe or profound core activity limitation.

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daughter when school finishes, to older Priority Area: Innovative families and carers who are struggling and responsive supports with health issues and can no longer provide care, to people with disability in senior years – all want support and People who participated said… services as they need them and long For a person with Down syndrome, before crises happen. I need good information (that) I There is a big call for Count Me In to understand, support, as well as advocate for increased services so that understanding, to achieve my goals. people don’t have to wait until crises occur, for a greater range of service I look to a future in which… options and for the development • families and individuals have the of innovative approaches so that supports they require to plan and individuals, families and carers have real achieve a vision for their lives choice and control. • people with disability live where they want, how they want, and with Pathways to innovative and whom they want responsive support

• people with disability and their Pathway 1 – Enable people with families have free choices and the disability, their families and carers to right to choose the level, extent access the critical supports, funding and timeframe that they will provide and services they need as they need care. them by making available: There must be support for a person • person-centred planning to facilitate with disability, or their family where decision-making and regular appropriate, to manage their own reviews of plans, in particular at funds in a variety of ways. This will times of life transition and changing allow for creative services, ownership need and flexibility for a person with • funding that can be used disability to meet their own individual flexibly to respond to individual needs… circumstances at all ages and stages of life People who have a severe or profound level of disability, their families and carers • services that are easy to reach want access to supports and services that geographically or are provided at make a real difference to their lives. From home young families who want their toddler with • an increased range of funding, a disability to learn to feed, talk, walk and supports and services to enable play; to parents who want a job timely response to need. or everyday recreation for their son or

24 Pathway 2 – Champion the Pathway 5 – Support the valuable role development of innovative support, of disability funded non-government funding and service approaches to organisations and Commission-funded provide more options for people with services in their specialised role, and disability, their families and carers, work collaboratively to: for example the proposed National • improve service responsiveness Disability Insurance Scheme, the Community Living Plan and increased • increase access to contemporary, opportunities for people to manage innovative services which promote their funding and supports. the participation and contribution of people with disability in their Pathway 3 – Ensure there are good, communities safe, alternative homes for individuals to live in when living with family • recognise and facilitate the pivotal or carers is no longer possible or role of families and carers appropriate, and provide assistance • address ongoing economic viability to address the emotional and practical and workforce issues. challenges that arise when moving to a new home and lifestyle. Pathway 6 – Acknowledge the integral contribution of unfunded disability Pathway 4 – Maintain a well-trained, groups and networks in promoting capable disability workforce by and facilitating self-determination addressing long-term disability and community engagement for workforce issues, including workforce people with disability and support training, and the low rate of wages their involvement in disability sector relative to other human service sectors. information, training, activities and decision-making forums.

Pathway 7 – Ensure that disability services are culturally responsive to the diverse needs of both Aboriginal people and people from culturally diverse backgrounds, including the assessment of eligibility and functional needs.

Pathway 8 – Undertake research, evaluation, forecasting and consultation to identify long-term needs and gaps in services.

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Participants in Count Me In stressed that Priority Area: Lifelong these people need to be kept clearly in security for people with focus to make sure they, too, have many complex and high needs opportunities to participate and contribute to community life. The pathways for this for support Priority Area are in addition to those in the previous section. People who participated said…

My concern for the future is that: Pathways to Lifelong security • People with disability with health for people with complex and and mental issues will be neglected. high needs for support

• A lot of good things will happen Pathway 1 – Safeguard the rights, for most people with disability, safety and wellbeing of people with but (I am) concerned that some complex and high needs for support with more profound disability will by: not fit into this ‘bright new world’. (My) fear is that government won’t • helping people with disability, their commit to safeguard the minority families and carers understand with the greatest needs. service systems and how to advocate for what they need and want People who need high levels of continuous, daily support over their • streamlining and simplifying service lifetime, or who have challenging and systems so that people with complex needs – in particular those who disability, their families and carers cannot speak for themselves – require can understand and navigate these special focus and assistance to ensure systems their voices are heard and their needs are • ensuring that individuals who met and safeguarded in all aspects of life. have most of their care provided These are also the individuals referred by service systems, either have to in Welcoming Communities, Pathway a network of family members or 4, who face considerable challenges in friends to speak on their behalf, joining community life and who are unlikely or have ongoing access to to be invited to join community initiatives. personal advocates to safeguard They include people with disability who their rights. need intensive, everyday medical support, people with multiple disabilities, people who are unable to speak for themselves in the community without assistance and people with complex and challenging behaviour.

26 Pathway 2 – Coordinate effective and Priority Area: Strong, timely service responses between supportive partnerships disability services and mainstream with families and carers agencies for people with disability who also have: People who participated said… • challenging personal or aggressive social behaviours Caring is… a reciprocal relationship • mental health disability with benefits for each party rather than… a burden for one party. • involvement with the justice system The strengths and gifts of each • ongoing and intensive medical person in the relationship (need to needs. be) acknowledged and the role of carer recognised and valued by the Pathway 3 – Ensure that people with community. complex and high support needs have access to: My husband received four hours a week home help as respite assistance • essential health, medical, dental for over four years. Then the full and therapy services four hours were ceased when it was interpreted differently. He also cares • the latest advances in specialist for his elderly parents. medical and assistive technologies. Family carers have two key concerns: Pathway 4 – Develop and maintain individual and systemic advocacy • How can I get through today to ensure that the authentic voice of people with disability, their • Who will care when I’m gone families and carers who are unable They need peace of mind on both to represent themselves without these matters. assistance is heard and responded to, including people from Aboriginal and It will continue to be the women who culturally diverse backgrounds. care, who continue to age in poverty because they are left with the caring Pathway 5 – Ensure that people with role. complex and high support needs, along with other people with disability, have access to a range of housing and alternatives to employment options when maintaining a job is not possible.

27 Count Me In

About one in 10 West Australians is a family carer of a person with disability, Pathways to strong, supportive with more than one-third of carers having partnerships with families and a disability themselves (see endnote 7). carers

Most carers are women aged between 45 Pathway 1 – Understand the life and 54 years who provide, on average, 40 stressors facing families and carers hours or more of care each week. Because and assist them to maintain good of their home-based responsibilities, carers physical, mental and emotional health. are much less likely to have a job (39 per cent) compared to non-carers (68 per Pathway 2 – Recognise the diverse cent, see endnote 8). Many do not view experiences and needs of families and themselves as carers but consider their carers, including those from Aboriginal role as an extension of the relationship and culturally diverse backgrounds, shared with the person they provide care and ensure supports are available to for. meet their needs including: The multitude of issues facing carers is • physical and emotional health care well documented and includes: • a range of practical in-home and • decline in physical, mental and out-of-home services emotional health • financial support. • facing poverty and economic hardship Pathway 3 – Provide greater certainty • not enough breaks from caring and peace of mind for families and • insufficient activities or employment carers: for their family member with disability • through information and assistance to enjoy during the day to plan, in particular at times • lack of reassurance that an alternative, of transition, for example from supported home is available when school to work, and from living caring is no longer possible. in the family home to other accommodation The ageing of the carer population, in particular, signals the need for developing • by helping families and carers long-term strategies. to make informed choices from a range of support options and respecting the choices made • by facilitating access to information and flexible supports and services when they are needed, particularly in times of pending crisis and as family members and carers age

28 • by facilitating access to individual Priority Area: Responsive advocacy to help families and approaches in rural and carers clarify and speak out for remote areas what they need.

Pathway 4 – Promote links between People who participated said… different families and carers and links with community networks as valuable People living in rural and remote areas sources of information, emotional of the State (need to) receive equitable, support and leadership development. appropriate services and supports that allow them to remain living in their Pathway 5 – Ensure families and communities. carers have choice about whether or not to engage in paid employment by There is a sense that it is too hard in making sure the financial and practical rural and remote areas and therefore supports and services needed by less than the best is okay. their family member with disability are available. Services need to go to where Aboriginal people live. Pathway 6 – Value and support the important commitments and interests Transport and equipment needs to be that families and carers have in other established in remote environments areas of life, for example young carers such as wheelchairs that work in sand. maintaining social networks, sport and education.

Pathway 7 – Support families and carers who wish to develop leadership and self-advocacy skills.

29 Count Me In

It is important for people living in metropolitan areas, in particular those Pathways to developing who develop disability policy and service responsive approaches for approaches, to understand the unique people living in rural and remote demographic, geographic, climatic and areas social features of rural and remote areas and the impact on providing responsive Pathway 1 – Develop flexible, services. Western Australia is the most innovative solutions to unique rural vast and diverse State in the country, and remote issues using a range of providing health, education, disability and strategies, for example: other services has many challenges. • investigate and promote the It must not be assumed, however, adoption of effective disability- that the metropolitan area always has related approaches in rural and better access and service approaches. remote areas Geographic isolation and limited access • develop partnerships between to service systems can, at times, create private, corporate and government the opportunity for innovative local bodies to improve housing, health, initiatives to fill gaps in supports and family support, disability and other services. services These initiatives may end up being • facilitate local ‘think-tanks’ and funded or remain unfunded and voluntary. other forums for people in rural and As well, partnerships between existing remote areas to create local and agencies may get stronger as local regional solutions. resources work together. In contrast, however, the availability of services and Pathway 2 – Ensure disability local solutions in some rural and remote services are culturally responsive areas falls short in comparison to the diverse needs of Aboriginal to those in metropolitan locations. people, for example, by providing cultural awareness training to staff, by employing Aboriginal staff and by encouraging Aboriginal-controlled agencies to provide services or partner disability organisations.

30 Pathway 3 – Develop strategies that Pathway 5 – Promote exchange of recognise and address the additional expertise between metropolitan, rural cost of goods, supports and services and remote areas through: in rural and remote areas, for example: • encouraging partnerships between • by increasing access to transport rural and remote agencies and by people with disability, their metropolitan-based agencies families and carers, for example • resourcing metropolitan-based by petrol subsidies, financial service providers to deliver assistance to purchase appropriate supports and services in rural and vehicles, increased community remote areas transport schemes and expansion of accessible and subsidised taxi • facilitating collaboration between schemes metropolitan and country organisations in relation to • by acknowledging and funding providing information and training more disability-related travel to for direct care workers, people with Perth or other service areas for disability, their families and carers people with disability, their families, carers, and service providers. • encouraging sharing of information and expertise between different Pathway 4 – Extend the reach of rural and remote areas. metropolitan-based information, supports and services to country Pathway 6 – Increase the attraction areas by: and retention of qualified workers in rural and remote areas by: • developing additional out-reach capacity within Commission • ensuring that tertiary training of services, Commission funded and therapists and human service unfunded services workers includes rural and remote work experience including service • utilising communication and web- delivery to Aboriginal communities based technology to complement direct service provision, for • developing strategies to retain example by developing an experienced human service and interactive web facility on disability disability staff use of technology, by using videos to demonstrate therapy and by • promoting jobs and career video-conferencing to share pathways in disability services, information and training. including for Aboriginal people.

31 Count Me In

It is uncertain exactly what this will mean Priority Area: for the uptake of personalised supports Collaborative responses and services. At present, approximately to people with disability one-third of people with disability who are eligible to receive such services do so. who are ageing This means that two-thirds of those who are eligible for services are receiving the People who participated said… assistance they require from other means, most likely from friends, family and carers. People are living longer and will have Whether or not people want to access greater expectations of a full and disability services depends on a number varied life… complexity of needs will of factors including how easy services increase and the interfaces between are to get to and use, how well services sectors will become more complex. match individual and family needs, and the extent to which families and carers (There will be) ageing baby boomers are able and willing to provide substantial without primary carers. care. The last consideration is vital as many carers are ageing too. With the population ageing there are implications for workforce participation A major challenge and key priority for and workforce shortages. There will be Count Me In is ensuring that the interests decreased availability of family carers of an ageing population are met and that and increased pressure on budgets. they do not compete for scarce resources with those of the younger populations The ageing population presents with disability. Cooperative state and opportunities: as they age people national approaches are imperative. will increasingly expect to remain

connected… the ageing of the population will lead to the growth of the same kinds of services as people with disability require.

The West Australian population is expected to increase by about 22 per cent between 2008 and 2023 with most of this increase among people aged 65 or over. People with disability who are ageing and people who acquire disability in senior years face a number of similar issues that may require preventive health intervention, best use of technology, supports to age at home or in ‘place’, and better design of aged care residential living (see endnote 9).

32 Pathways to develop • ensuring that older people with collaborative responses to disability receive services that people with disability who are enable them to remain at home ageing where this is a preferred option for example in-home support, Pathway 1 – Develop effective aids and equipment, and ‘change interfaces between disability services, of support’ assessments. Home community aged care services, and may be a range of settings residential aged care services for including independent living, living older people with disability who live with family or carers or living in independently, with family or carers, or supported accommodation in supported accommodation. • educating disability workers in ways to foster active, healthy Pathway 2 – Develop aged care ageing facilities that cater effectively for people with all types of disability • anticipating and responding to and that provide home-like the needs of people with disability environments and good opportunities who are living longer lives and are for community access. likely to acquire other conditions as they age, for example Alzheimer’s Pathway 3 – Ensure that services disease for older people with disability are culturally responsive to people from • emphasising opportunities for Aboriginal and culturally diverse community contribution and backgrounds, for example, by participation for people with acknowledging and assisting those disability during senior years. Aboriginal people who wish to return to, or visit, country as they age, and by Pathway 5 – Ensure that people with providing additional support to families disability, their families and carers of people with disability from culturally receive specialised help to coordinate, diverse backgrounds who wish to plan and address the many separation continue caring. issues that arise when older people with disability leave their family home. Pathway 4 – Promote active, healthy ageing and ageing-in-place by: • ensuring that preventive health funding, health programs and lifestyle planning for ageing Australians are also accessed by older people with disability

33 Count Me In

Keep talking and really listen. Keeping the • Talk with families. It’s not rocket process alive science. and committed • Keep in touch with people and use their stories as levers to identify solutions. Participants were asked about how to • Listen to people with disability, keep the Count Me In process alive and their families and carers and the committed. They warned that it must not non-government sector that services just be another plan, another consultation and supports them. Consultation process, another piece of paper. They fatigue is for real. were also unanimous about what was needed to ensure real change and keep Be strategic and practical. the momentum going over future years. • Be strategic and structured in planning Put people with disability, with a long-term outlook. Undertake their families and carers in the good research. Be solutions-focused. driver’s seat. Ensure regular review. • Listen to what people with disability • Focus on what people with disability and carers of people with disability and their families want, not what looks have to say – don’t do anything about good on paper. Be visionary but also us without us. practical. Remember that quality often lies in the detail for people with • People with disability are the most disability. We want this plan to provide knowledgeable about the issues us with an instrument of change. and agendas that have the greatest impact on their daily lives. For too long • The media is a powerful tool. Let’s disability services agendas have been start using it to our advantage. the agendas of decision makers and not that of the people with disability.

34 Many practical and concrete ideas also Core principles emerged, for example: Drawing from participants’ responses, • Establishing a taskforce within four key principles underpin the Government with representation from implementation of Count Me In. people with disability and from across government and industry. • The strong and central involvement • Providing regular opportunities for of people with disability, their ongoing input into the process with families and carers in advising and real efforts being made to include the leading developments. voices of people who are often seen as ‘too hard’ to engage with. • Commitment to human rights and • Putting Count Me In in a prominent the Count Me In vision. location on the Disability Services • On-going conversations with all Commission website to inform people stakeholders and other interested the project is still in progress. people. Intentional listening, mutual • Using the Local Area Coordination conversations, innovative planning network to distribute information to and determined implementation their local communities and networks are key ingredients underpinned by and facilitate the gathering of on-going good will between all stakeholders. feedback. People with disability, their families and carers are central to these • Using non-government agencies, processes. including unfunded organisations and support groups, to distribute • Commitment to a reflective information out to their local process which tracks progress and communities and networks. responds to changing or emerging trends and the needs of people with disability, their families and carers. Priorities may change as progress is made or other critical issues emerge. Good measures of progress, good detection of emerging needs and trends and the best ways to keep everyone informed are crucial to unfolding Count Me In.

35 Count Me In

In partnership with key players, the Implementing Commission will: priorities and • support existing initiatives that progress the work of Count Me In pathways • build on or extend existing initiatives The Commission will keep abreast of where needed current and proposed initiatives that • develop new strategies where there directly help to progress the priorities are no existing ways to move forward and pathways in Count Me In. Initiatives on pathways may be: • establish ways to track and report • effective elsewhere in Australia or progress on each pathway overseas and considered worthwhile to implement in Western Australia • develop ways to keep everyone informed and engaged • currently proposed or in operation in Western Australia – coordinated • keep abreast of new and emerging or funded by community groups or trends and issues that may need to be networks, the Disability Services addressed during the life of Count Me Commission or other government or In. non-government agencies. Everyone will benefit by taking a long- term view of our future and playing a part to develop a Western Australia where everyone is valued and included. Developing a Western Australia where people with disability, their families and carers thrive builds a Western Australia where all people can thrive.

36 Endnotes

1. The West Australian population will increase by about 22 per cent to more than 2.55 million people between 2008 and 2023 with the most increase in those aged over 65 years. The total number of persons who identify themselves as having a disability will increase by about 38 per cent by 2023. 2. More than 300 people contributed to the development of Count Me In. Detailed descriptions of the process and all working papers including monographs, a summary of consultations, and summary papers ‘Heading in helpful directions’ and ‘Working at the interface’ are available on the Disability Services Commission website at www.disability.wa.gov.au or by contacting Strategic Policy on (08) 9426 9200. 3. Data from the Australian Bureau of Statistics (ABS) 2006 Census were used to estimate future numbers of persons with disability and people aged under 65 years who report that they experience profound or severe core activity limitation, that is, the need for personal assistance in self-care, mobility or communication. 4. Universal design emerged from barrier free and assistive technology developments. It aims to create buildings, products and environments that are usable and effective for everyone, not just people with disability. 5. Areas such as justice and health were specifically mentioned in submissions. 6. In relation to people from culturally diverse backgrounds, Western Australia has a highly diverse population including many new and emerging groups. More than one quarter of West Australians were born overseas. More than 200 countries are represented, 170 different languages and more than 100 different faiths. The 10 fastest growing populations from 1996-2001 were Somalia, Sierra Leone, Afghanistan, Oman, Sudan, Iraq, Botswana, Syria, Liberia and Bosnia/Herzegovina. 7. Under the Disability Services Act 1993 (amended), a carer is a person who provides ongoing care or assistance to a person with disability. The term does not cover a person employed to provide care or assistance or while doing community work. The definition is congruent with the meaning of carer under the Carers Recognition Act 2004. Most carers are family members. 8. In 2009, there were 2.6 million carers who provided assistance to those who needed help because of disability or old age. Just under one third of these (29 per cent) were primary carers; that is, people who provided the majority of the informal help needed by a person with disability or aged 60 years and over. Over two-thirds of primary carers (68 per cent) were women aged between 45 and 54 years of age. (Disability, ageing and carers Australia: Summary of findings Table 5). 9. Because of the large increase in the number of older West Australians, the overall incidence of disability is expected to increase substantially in the next 15 years – by about 38 per cent by 2023. Of this group, the percentage of those with profound or severe core activity limitation is projected to increase by around 44 per cent in 2023.

37 Count Me In

Notes

38 Notes

39 Disability Services Commission 146–160 Colin Street West Perth, WA 6005 PO Box 441 Phone: 9426 9200 Freecall (country): 1800 998 214 Fax: 9226 2306 TTY: 9426 9315 National Relay Service: 13 36 77 Email: [email protected] Website: www.disability.wa.gov.au

DSC: 2234-01-12-2013 © Disability Services Commission. December 2013. This publication is available in alternative formats on request.