The Next Steps for Disability and Carer Policy: Reducing the divide

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1 The Next Steps for Disability and Carer Policy: Reducing the divide Presentation to National Disability Services Conference May 2010 This paper was developed for Carers Victoria through collaborative work between Chris Fyffe, Disability Consultant and Gill Pierce, Ben Ilsley and Penny Paul from Carers Victoria s Policy Team. It summarises a larger discussion paper by the same authors. The next steps: adults with a disability and their family carers. November 2009 The authors are keen to encourage discussion and debate of the key issues. Your feedback and appraisal of both papers is would be appreciated by 28 May Feedback to: Dr Chris Fyffe 47 Fadersons Lane Mandurang 3551 AUSTRALIA Ph: (03) Fax (03) Refined discussion papers will be mounted on Carers Victoria s website later in the year.

2 The Next Steps for Disability and Carer Policy: Reducing the divide What this paper is about This paper argues that there is a need to adjust policy discourses to meet the challenges of the future. It aims to generate debate and discussion about the policies concerning people with a disability and their family members. It provides an overview and critique of current dominant thought and an explanation of how policy has evolved. There are limitations to the policy frameworks which relate to families of a person with a disability. Some of these have emerged in the form of political and policy tensions between advocates representing the needs of people with a disability and those representing their families. While debate and difference can be healthy for policy development, this paper will argue that these differences need to be modified to ensure that future policy matches the needs of all people with a disability and their families. The paper starts from a position that there is agreement amongst all stakeholders that the needs of many people with a disability and those of their family members are not adequately met in the current services system. It is not merely a discussion about theory. Disability policy is inevitably wrapped up in real world problems of competing needs, limited resources, implementation issues and politics. Policy is understood to exist in this context. This paper is a summary of a more comprehensive piece of work produced through collaboration between Carers Victoria and Chris Fyffe, a consultant in the field of disability policy. The larger work consisted of a literature review and analysis, debate and synthesis of the findings. The polarisation of advocacy and support programs Various policy thrusts over the last two decades have led to an unnecessary separation of the policies and programs for people with a disability and those for their families. In particular, disability rights and community living policies; and policies which address carer needs and policies about privacy and individual person centred care. None of these policy approaches adequately capture reciprocity and dynamic changes in the caring and disability journeys within families. 1. Community living policy In Western countries over the last few decades, policy concerning people with a disability has been shaped by Community Living policies. This started from a relatively successful rights framework. People with a disability were regarded as entitled to live in the community and enjoy the same opportunities as other citizens to participate and make their own choices about their lives. Community living policies influenced and existed in parallel with the closing down of many large institutions for people with a disability and/or mental illness. A focus on disability rights was necessary to make the shift from previous policies and beliefs about the segregation of people with a disability. This focus, though, has had its own unintended consequences. This paper will argue, not that disability rights are 2

3 inherently flawed, but that they are insufficient, particularly in the context of chronic under funding of services for people with a disability. The implementation of community living policies has not delivered the comprehensive range of services needed to support people with a disability in the community and their families. A priority focus by governments on those people who had been living in institutions meant that the needs of many others were overlooked. Most people with a disability were not living in institutions and lived with their families. It became clear to many families that the limited program resources available were insufficient for people with a disability and frequently did not address broader family needs. 2. The emergence of carer policy Families began lobbying for increased support for their own needs, giving rise to the carer movement. It focused largely on the needs of families for respite and for psychosocial support programs such as counseling, information and education. As this movement gained momentum, divergence increased between advocacy for carer needs and disability rights advocacy. It resulted in the current situation in which there are parallel and poorly coordinated services systems and funding programs for carers and for people with a disability. Separate advocacy agendas suggest that the needs and interests of people with a disability and those of their families have become largely separate and distinct. The term carer has become narrowly defined, referring to a set of largely practical tasks and activities in relation to a person with a disability. This definition excludes natural family relationships which are rich, complex and mutually inclusive. It does nothing to promote the dignity of people with a disability. Advocacy for carers often does not pay sufficient attention to the needs and perspectives of people with a disability. At the same time, disability rights advocacy rarely pays heed to the experience of families and the importance of family relationships in the lives of people with a disability. For most caring friends and family members, their greatest concern is to ensure that their family member has opportunities to reach their full potential through access to the services and supports they need - including early and remedial intervention, rehabilitation, personal care and assistance, education or employment, income, recreation, aids and equipment, housing and support as well as a network of supportive family members and friends. Adequate, affordable and quality services ensure the best possible life and provide the means for community participation for the person with a disability. Adequate services for the person with a disability also provide a respite effect for their families. They can ensure that caring family members can participate in employment, and social and civic affairs. While emergency and episodic forms of respite care will be required to cover unexpected life events, the provision of respite in the form of breaks for caring families can be seen to be partly a consequence of inadequate access to services and supports which ensure a good life for both people with a disability and their families. 3

4 3. Privacy policy, and individualised person centred care Concurrently, in efforts to address the power imbalance between people with a disability and services providers, individualised practice approaches have been driven by a focus on privacy. In addition, the wide spread promotion of person- centred thinking has had the objective of encouraging individuals with a disability to increasingly take an active role in managing their own treatment and care. These policy approaches generally: Exclude consideration of the interdependence of many people with significant others; that is their families and friends. Rarely address the comprehensive needs of the person in their family situation. Have little to say about the why, when, or how family involvement takes place, and its extent. 4. Changing needs of family carers and people with a disability Both disabling conditions and care giving roles are dynamic, developmental and temporal in terms of their lived experience. The needs of a person with a disability for support and assistance change over time; as does the assistance needed or given by their friends and families. The close engagement of families and friends in the disability pathway is common at onset, during diagnosis and initial treatment and care. With the exception of those who are disengaged, many families with close personal relationships play an ongoing role in assisting their family member to organise their life and address their aspirations. They have a fundamental stake in the outcome of services. Along with the person with a disability, families live the consequences of services failures and broken dreams,. Like any network of family and friends, they may pick up the pieces and provide increased support and assistance during crises and other life course challenges, regardless of whether the person with a disability is living with them or not. Similarly, insight and close relationships between people with a disability and their significant others ensures that many people with a disability provide reciprocal emotional support, advice and assistance to their family and friends when their needs and circumstances change. The problem of polarised approaches The emergence of separate policies and services for families and for people with a disability has brought benefits to both groups but now it s time to move on. Polarisation has had many consequences for policy, resourcing, service system design and practice. Some of the most prominent include: Many disability advocates perceive, understandably, that resources allocated to carers occur at the expense of people with a disability. The two interrelated groups are pitted against one another in the competition for resources and support. Families of a person with a disability feel that neither the disability rights discourse nor the carer discourse accurately or adequately represents their lived experience and the challenges they face. Family members recognise that their needs are interdependent as well as separate. They understand that, for example, a lack of 4

5 quality formal support for the person with a disability can have implications for the whole family. Rights based approaches used by, and on behalf of, people with a disability and, to a lesser extent, their carers have provided an expectation of community participation and citizenship. However, neither rights based approaches nor living in a community setting can provide all the ingredients for flourishing or fulfilling lives. Although laws can deter and monitor discrimination, they cannot provide meaningful jobs, housing, high quality support or meaningful social relationships and friendship networks. The current policy discourse about carers, particularly the elements that identify primary carers and describe caring narrowly in terms of practical tasks, care load and cost savings to governments has had limited success. The carer label is an artificial construct which can institutionalise one aspect of a person s life and depersonalise family relationships, values, histories and insights. Many family members and friends who support a person with a disability do not identify with the term. It does not describe key relationships or the key elements of nurturing, sustaining and caring about another person. It is patronizing to people with a disability and denies the reciprocity that exists in family and friendship networks. The separate application of disability rights policy and carer policy has led to generalised approaches that assume that the needs of all people with a disability, or the needs of their carers are largely the same. Referred to as de-differentiation by some disability academics, policy directed at the common good of all people with a disability camouflages a range of different needs for support and assistance and different types of family involvement An example is the insufficient attention paid to the needs of people with decision-making impairments. Their needs do not fit neatly within the current conceptualisations of disability rights which emphasise independence and autonomy in decision making and the right to choose where and with whom to live. The neglect of this area has meant that discussions about the roles of family members in supporting participatory decision making and identifying the choices being made by the person with a disability have not occurred. Family members feel responsible for making decisions on behalf of the person with a disability but are not necessarily equipped, resourced or legally supported to do so. Large resource gaps in the system mean that there is a lack of accommodation or housing policies and funding to meet the needs of people with a disability, particularly those with severe or profound intellectual or psychiatric disabilities. o Options for people with a disability and their families to plan together for future housing and support needs of the person with a disability, to choose who they live with, in what style of housing and where, are in short supply. There is little support for people with a disability and their families to negotiate any differences of opinion about preferred living arrangements, or to implement their housing choices. o People with a disability who live with their family are frequently assumed to have fewer needs than those who live separately. The provision of in-home and other supports to assist families to support a severely intellectually or psychiatrically disabled person to remain with their family in their home community is much more difficult to achieve, even when it is an active choice of the person with a disability. 5

6 Why is a new conceptualisation needed? Inadequate services means that both people with a disability and their families can be socially and economically excluded, and experience poor health and well being. The increasing gap between what people with a disability and their families need to achieve a good life and the resources available to support their chosen lifestyles must be addressed, as must resource wastage through uncoordinated and parallel service initiatives. Higher order questions, such as the shortage of resources for housing and support for people with a disability, and its consequence in increasing the reliance on family care is a key dilemma. It is accompanied by family uncertainty about whether transition and retirement from caring roles are possible. Equally, many people with a disability have little real choice about living separate lives. In addition, there is a need for policy and program development which understands that families are integral to community living policies. It must recognize the common interdependence between people with a disability and their families and friends, and include this in the development of lifestyle possibilities. It must equally address the needs of people with a disability who are disengaged from or lack a supportive family network. New and expanded thinking is required to describe and determine policy and practice approaches in adult to adult relationships for families of adults with a decision-making disability across the life course. This would better express their lived experiences. There is a need for disability and carer advocates to gain insight from and learn from one another s approaches and to advocate for a good life for all. Dynamic partnerships and systemic leadership can become combined and influential forces for change. A starting point could be to discuss how a focus on rights could evolve and extend to an entitlement to a good life for all people with a disability and, where applicable, their family members. A good life is necessarily individually defined but will include essential human needs for not just shelter and physical needs, but for belonging, interconnectedness, recognition, good health, life opportunities and meaning. Many advocates and academics argue for an entitlement based approach. It is time for people with a disability and their families to advocate for this together. A new approach would build on the gains of the disability rights and carer movements and develop a shared agenda to address new challenges. It must be broader and more inclusive than before, to include all people with a disability and, wherever applicable, their families. It must also be more specific about acknowledging the different needs that people with a disability and their families may have, including the needs of people with disabilities who have no or little contact with family members. Opportunities for a common agenda Although not sufficient in the long term, a clear intention to develop a common agenda between disability and carer advocates would allow current and pressing higher order problems to be addressed. Some areas where this could be applied include: 6

7 Joint advocacy for a National Disability Insurance Scheme which could be consistent with an entitlement based approach for people with a disability. Collaborative work could ensure the scheme gets its objectives, scope and ingredients right. A new scheme must closely match the lived experience of people with a disability and their families, whether the live together or not. As the needs of people with a disability and those of family carers are both diverse and often fundamentally inter dependent, this will require greater sophistication in policy and practice than that required to get the balance right between programs for people with a disability and programs for their caring families. The stakes are high: it is more important than ever to avoid competing for resources to meet the same goals. Increased attention to the needs of people with a decision-making impairment and their families and to adult to adult relationships of support throughout life. This includes addressing the nature of partnerships and roles between people with a disability, their friends and family and services providers. Program design which focuses on the needs of the whole family rather than just a person with a disability, one carer, or both but not other family members. How can available resources be integrated or coordinated towards common outcomes, through service redesign and changes in policy, program funding, practice procedures and guidelines? How can funding structures shift from single input, individualised approaches to allow programs to work with all family members when necessary? A joint campaign to increase investment in housing options for people with a disability, to enable meaningful life style choices to be made by both people with a disability and their families. Anxieties and risks It is understandable that advocacy and representative bodies will be anxious about changing the ways in which they have become successful. Some of these anxieties will be based on existing thinking that believes that disability or carer needs can be promoted but not both, or that change inevitably results in winners and losers. However, for many people with a disability and their families, any future gains will be limited by polarised or narrow approaches. In contrast, the potential gains through collaboration and common agendas will be considerable. If you keep going on the road you are, you will miss the road to the future. (Handy 2004) 7

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