MOVING TOWARDS A SYSTEM OF SUPPORT

 

 

 

 

 

WAYS TOWARDS ENSURING PROPER MANAGEMENT OF DISABILITY FUNDS AND SERVICES to create a more flexible system that promotes freedom and strengthens community

 

 

 

 

 

A discussion paper prepared by QPPD

Revised February 2002

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Queensland Parents for People with a Disability vigorously defends justice and rights for people with disabilities by exposing exclusionary practices, speaking out against injustices and promoting people with disabilities as respected, valued and participating members of society.

 

 

 


Preface

 

DSQ has begun a funding reform project. QPPD is now well positioned to provide valuable input to ensure proper management and administration of the resources in the sector as it has been included on the Funding Reform Strategy project Steering Committee.

 

In November 2001, QPPD hosted a forum that was attended by a wide range of people concerned with this issue, including people with disability, parents, advocates and service providers.  The forum was led by Michael Kendrick who has considerable experience in working with government and bureaucracy in bringing about reform.  Our aim was to start the process of formulating a sound position from which QPPD can lobby for real and beneficial changes.

 

The purpose of this revised discussion paper is to further develop and strengthen our ideas with the input of members and the broader disability community.  The discussion is followed by a series of questions and spaces for your comments.

 

Please respond to the discussion questions or contribute to the discussion by joining QPPD's email discussion group by contacting the office.

QPPD

PO Box 470

Paddington  Q  4064

 

Or Fax: 07 3368 3004

 

Or email: qppd@qppd.org

 

QPPD will continue to hold state wide teleconferences and gatherings throughout the year to discuss the issues raised in this paper.

 

For further information or to give verbal feedback please contact QPPD on (07) 3368 3055 or 1800 805 184.

 

 

 

 

 

 

 

 

 

 

QPPD wishes to acknowledge the work of Michael Kendrick, our key members and allies who have contributed in various ways over the last two years to the formation of the ideas set out in this paper.

 

 

the natural authority of people with disabilities, their parents, families and allies

 

People with disabilities and their families know their own situations and circumstances best; they love and care for each other in ways others cannot. They are ultimately responsible for their own wellbeing, their relationships permit them to observe and speak out when they are adversely affected.  They have witnessed and lived the effects of large, mismanaged bureaucratic systems and felt the impact of the undervaluing of their lives, talents and experiences. Their interests are vested only in securing the freedom and wellbeing that other citizens take for granted.

 

Despite the evidence described in this paper some people with disabilities, their families, and allies have developed ways and means to ensure that the barriers, pressures and constraints of institutional thinking, practices and systems no longer impact on their lives.  They have rejected the impositions that centuries of marginalisation have created.  Through love, compassion and commitment, lifestyles that are individually and communally beneficial have been forged.  The collective wisdom of people with disabilities, their families, advocates and allies who have clarity and experience in creating personalised supports contribute to a vision of a system which supports all people, regardless of their disability, to have rich lives and relationships.

 

 

WHY WE NEED MORE THAN FUNDING REFORM

 

The reality of everyday life for Queenslanders who have disabilities and their families, is not solely the result of the lack, misdirection or mismanagement of funds. Many other factors contribute to their struggles. Nevertheless, through their need for support, people are forced to engage in a system that can be dehumanising and demoralising in its own ways. The present system’s arrangements and methods do not always recognise the knowledge and potential of those it purports to serve, nor that of the community. Despite its good intentions and occasional progress, it still continues with practices that place people at the fringes of society despite the evidence that the more distant people are from the social fabric of their communities the higher their dependence on public funds becomes.

 

The changes that must be made, if just and equitable allocation of public resources is ever to be achieved, will not come from simply adding money to the present system in its present patterns.  Deeper questions must be asked and answered about the pattern of how money is spent.  Quite specific new methods for valuing of the individual, family and community, recognition of existing wisdom and knowledge, proper delegation of authority and ensuring decision making is closest to those it affects, are some of the areas that need to be addressed if actual reform is to be gained in Queensland.

 

The Queensland context

 

The lived experiences of people with disabilities, their families, friends and advocates in Queensland provide us with the first step in analysing the impact of the current state of our service system.  There is no doubt that Queensland is way behind all the other Australian states in terms of per capita funding for people with disabilities.  The Queensland system is disproportionately managed and administered by a large state government bureaucracy and approximately 6 large funded organisations.  It is a system in which the people furthest away from those who receive services are paid the highest incomes and have the greatest authority, and those who are closest to the person are the lowest paid and generally have the least authority.  The larger the organisation, the more money is spent on the management and administration of its systems and the greater the distance between those that make decisions and the individuals it claims to serve.

 

In Queensland, the principal focus of financial decision making is around the allocation of funds in response to individual crises.  Funding is allocated based on critical need as described through a needs registration process that appears to favour only those individuals and families who reach desperation point. This reactive response occupies vast amounts of staff time including those operating at senior levels, (eg. regional directors) and often results in exceedingly costly and restrictive arrangements being put in place. 

 

The funding allocation system has brought forward tensions between those who have been given funding and those who miss out, when their needs for support appear to be similar.  When funding is allocated, it is often difficult to find services that will work with people with disabilities and their families to learn about what they actually want and need and to support these things to happen. Rather than person centred supports tailored to the individual and their desired lifestyle, people are usually offered standardised models of service or vacancies in such programs. This results in the dysfunction and disillusion we are currently witnessing of slow progress in expanding the quality and range of choices of supports due to the bias in favour of conventional models and service providers.

 

·        Thousands of people with disabilities in Queensland live in poor quality institutional environments - large residential facilities, hospital wards, hostels, nursing homes and group homes.  During the nineties many individuals have been “deinstitutionalised” only to be “reinstitutionalised” within smaller settings. 

·        Very few people who have left institutions have left the human service system altogether, however inadequate supports have left some people virtually abandoned in the community.

·        A large number of people (eg. over 4000 individuals registered for lifestyle support packages in Queensland) receive no services or paid supports at all.  There are also a large number of people who receive supports or services that are inadequate in terms of quality and/or quantity. 

·        A number of people, who through no fault of their own, have high levels of frustration and anxiety manifesting in behaviour that incurs highly restrictive and costly responses.

·        The system employs trained and untrained people and hires them out to people who require support.  These "paid relationships" rarely develop to include the "supported" within the life of the "supporter".  They are more often industry-based relationships that are under the control of an agency and by their nature they restrict opportunities for more natural relationship development.  Therefore, the only relationships many people have are ones they pay for.

·        While the accepted presence of people with disabilities appears to be established within Queensland society the far too common experiences of people with disabilities, especially people who are seen as having challenging behaviour, are those of rejection, powerlessness and devalued social roles.

 

The real life experiences of people with disability, their families and supporters indicate to many people that that there is very poor return for the millions of dollars poured into the system.  It is no wonder that QPPD is constantly being asked “With all the new government changes it is supposed to be better, so why hasn’t anything changed for me?” Such a view, while alarmist and reactive in its own way, nevertheless does raise the quite valid need for there to be a close look at the system’s methods and priorities, and that this be done in a new kind of partnership pattern with consumers and families.

 

The current system's waiting lists, entry points and processes have created a labyrinth that ignores the potential of people with disabilities and the community.  It perpetuates anachronistic practices that keep people distant from the social fabric of their communities and increase their dependence upon public funds.  It is community weakening not community strengthening. It has created a huge demand on scarce resources through its refusal to acknowledge the knowledge, capacities and desires of the people it serves and their families, friends and allies. In short, the system has grown due to community pressure in a “helter skelter” manner and it is timely to evaluate whether it is the type of system we now need. Queensland is not alone in asking such questions about its systems.

 

QPPD recognises and appreciates the many supportive, talented and enlightened people that have aided and encouraged people with disabilities and their families for years in their capacity as workers and managers within DSQ and provider organisations. Without these people, much of the progress that has been made in Queensland would have been impossible. It is the hope of QPPD that these relationships will be continued and enhanced by what we propose in this paper, and that they will join us in the search for improvements and progress.

 

 

SEEING THE BIGGER PICTURE

 

We need to understand the prevailing paradigm of the human service system and to critically assess and reflect on the policies and practices that impact on the identity and life experiences of people with disabilities.  It is only when we can understand and name what is actually happening that we can begin to seek solutions that address the systemic dysfunctions.

 

 

 

 

Korten (1984)[1], more than a decade ago, described the human system as heading towards crisis and incoherency:

 

Modernisation has been accompanied by a trend toward professionalising, centralising, and publicly funding an ever-growing number of activities that once were the province of the individual, the family, and the community – from health care, home building, and neighbourhood renewal to day care and care of elderly.  Self-interested professional and bureaucratic monopolies have come to control nearly every sector of human activity and have successfully fashioned a complex web of governmental regulations that sustain their interests, from building codes to professional licensing requirements.  But the financial and managerial burdens of professional bureaucratised approaches to meeting basic human needs are proving too much for even the wealthiest of nations, to say nothing of the depersonalisation, inefficiency and general ineffectiveness of many such programs. (p.302)

 

Through workshops, consultations with our members, discussions with advocates and advocacy groups, and meetings with bureaucrats over the last twelve months we have identified evidence of what we consider the prevailing bureaucratic and program models which constitute the current paradigm.

·        Shifting resources within the limitations of formula models with little investment in community capacity building, strengthening of personal supports, and personalised planning and development.   Although macro-funding policy has changed with the introduction of individualised funding, old formulae and limits are still used as guidelines.

·        Promoting and hiring managers who have no experience and connection with people with disability or understanding of the societal context of human service systems.  This also leads to a needless repetition of similar strategies as lessons from history are simply not known.

·        Confusion of purpose and role.  For example, service providers acting as arms of government, support facilitators employed by the funder to assist people to apply for funding, funding projects on quality assurance while propping up large, outmoded services.

·        Regional managers spending inordinate amount of time away from their management responsibilities dealing with crisis situations.

·        Creation of advisory roles for people with disability and families (eg Regional Disability Councils), who without decision making authority, are tokenistic and powerless.

·        Increasing inequity even as more funds are poured into the system.

 

From this evidence we have identified the following questionable assumptions as underpinning the prevailing paradigm:

·        People with disabilities needs are caused by their own deficiencies

·        Services and programs are essential in supporting people with disabilities

·        People with disabilities need professional help

·        Providing services is very expensive

·        Management is highly technical and objective

 

 

From Services to Supports

 

Our analysis of the human service system and the assumptions that underpin it leads us to conclude that tinkering with funding mechanisms and policy will not create systemic change.  QPPD advocates movement towards a system that provides the necessary support through relationships formed around typical life patterns and that are based upon the needs, skills and interests of both parties in the relationship. This system is contingent upon close-proximity decision making through knowing, listening, watching, being and sharing with the person.  QPPD favours a system that supports people in a manner that keeps them connected to their communities and promotes just and equitable funding for all people who need it. 

 

A new pattern (paradigm) needs to emerge that will support the:

·        Development and protection of proper relationships with government and with service providers, so that people with disabilities and their families have vision, and proper authority and support to be the builders of their own unique destinies.

·        Development and nurturing of new personalised services and supports which keep decision making close to those who are served and enable desirable and secure futures to be achieved

·        Internal building of the community’s capacity to welcome and offer hospitality with individuals so that ordinary life relationships at home, in the local community and in the wider community become part of everyday life.

 

The questions QPPD have considered in the discussion around system reform are:

·        How is a secure future, embedded in local community life, developed and guaranteed and with minimised vulnerability, with/for each adult with a disability?

·        How are new personalised services and supports grown and nurtured, so they remain aligned with and close to the people they serve with good committee governance, proper relationships and good, coherent staff management and support practices?

·        How can the use of money be allocated and safeguarded so that it enables the growth of new creativity, knowledge and strengthening within local communities so that adults with disabilities have a decent life?

·        How are proper, supportive relationships developed, which diminish the negative effects of technocratic bureaucracy, so that public accountability is upheld without further complicating the lives of adults with disabilities and their families?

·        How can local communities be involved in transforming deeply embedded social attitudes towards adults with disabilities through development of meaningful relationships with individuals?

 

 

Articulating a way forward

The difficulty in proposing a new way forward is articulating possible alternatives in a way that is understandable and attainable.  The proposal suggested here addresses aspects of a reformed system that encompasses changes for the individual, the region and the state.

 

 

Proposed Assumptions

People with disability and their families have natural authority in determining their own destinies.

People with disability and their families are part of and strengthen communities.

People with disability and their families are harmed by inflexible and highly bureaucratic service models.

When people with disability and their families are supported, not serviced, within natural community connections they are safer, more respected, and have greater opportunities.

Deeply rooted historical values and assumptions about people with disability are influenced by human service systems.

 

 

Proposed Elements FOR Reform

1.      A suitable measure of delegated authority from DSQ to oversee the design and implementation of individual supports and/or services is gradually assigned to people with disabilities and their families, friends and allies including the option of flexible self-management arrangements and the guidance of service development.  This would be done in stages in order to evolve sensible safeguards and supports to ensure it is as successful as practical.

2.      Sufficient authority, responsibility and accountability is assigned to elected regional community councils that respond to regional need through the development of largely self-sufficient regional support systems and are accountable for overseeing and guiding the region's budget and staff.

3.      Intentional targeting of annual expenditures, in each region, to favour fewer standardised service models and formulas linked to funding in favour of a year-by year proportional expansion of flexible, personalised support models and novel agencies and arrangements to support these.

  1. Gradual regionalisation of current centralised services which are statewide (eg Alternate Living Service) and the capacity to selectively move government managed initiatives (eg. Community Resource Officer, Intensive Family Support, Flexible Family Support) to community governance.

5.      The fashioning of a system where the minister annually creates state-wide priorities and subsequently requests regional plans to implement these in the context of coherent regional services plans and strategies.

 

 

Proposed Principles for PROPER USE OF PUBLIC MONEY

The proposal relies upon the adoption of a set of principles that would guide decisions and actions made at all levels.  

1.      Supports will be designed to enhance naturally-occurring networks in a person’s life

2.      Neighbourhood, local and community resources will be considered part of support and natural safeguards in a person’s life

3.      Formal services are designed to provide minimal intrusion in the person’s life

4.      Valued social roles are developed, supported and maintained in a person’s life as a priority

  1. People with disability are respected as authors of their own lives and given opportunity and assistance
  2. Resources are managed and allocated at a local level
  3. People with disability have the right to determine the level of support they need and the right to negotiate provision of that support

 

 

PRACTICAL IMPLICATIONS for System Reform

1.      The individual and family have:

·        sufficient authority in decision making about their individual service arrangements to guide most of the crucial decisions

·        accountability for the wise use of public funds used to support these

·        responsibility to seek support arrangements that hold promise for valued social roles and to participate in and contribute to community life

·        the right to negotiate and to receive independent assistance to plan and develop their lifestyle, future and supports

 

 

Having control of one's own life is fundamental to being human and highly valued in our society.  Reform of the system rests upon individuals having the authority to make the decisions affecting their lives - this extends to parents, families, and friends who know the person involved well.  When a person's capacity to express their preferences, beliefs or point of view is impaired - people closest to the person are usually best able to interpret their wishes.  Experience shows that people thought unable to have an opinion or even care about what happens to them, will demonstrate through their behaviour, their feelings and preferences. It is essential that each individual have someone who is committed to listening.

  

Having authority is not a free-for-all, it implies responsibility and accountability for wise use of public funds.  This principle implies a necessity to ensure that funding is used for the person and the purposes for which it is intended.  The responsibility to seek valued social roles, to participate in and contribute to community life are principles that have long been held and are worthy goals for which public funds can be expended.

 

There are various ways that individuals and families could uphold their right to negotiate and to receive independent assistance to plan and develop their lifestyle, future and supports.  Some people will already be skilled in this, some will want more information or training, others will want or need additional assistance to ensure the best possible support and outcomes.  Individuals’ rights would need to extend to being able to “unbundle” (take a portion of block funding) from existing service providers to use elsewhere.  People with individualised funding would need opportunity and support to negotiate the future use of their allocated money.  Shared spending could be negotiated where individuals/families jointly form their own services.  New services could be auspiced by existing service providers or become separate incorporated organisations.

As indicated earlier, these sorts of changes ought to be introduced in each region gradually in order to discover the methods of introduction and continued operation that are most effective. It has been the experience elsewhere that consumers and families have been granted greater authority and responsibility in individual service matters without adequate support. Equally, these new empowered roles are unfamiliar to many providers and government workers, so a measure of transitional confusion, incoherency and uncertainty is to be expected and must be managed sensitively.

 

 

 

  1. Elected Regional Community Councils have:

·        authority to develop and oversee the implementation of a regional plan (including a strategy to deal with emergencies within the region), recruit staff, expend and be accountable for the regional budget

·        responsibility to ensure actual decision making is closest to the individual and is consistent with promoting and supporting autonomy

·        the right to periodically negotiate with government to meet the needs within the region

 

 

It is proposed that each region eventually have a locally elected regional community council with administrative governance not just advisory responsibility. The council would be authorised to develop a regional plan in accordance with state priorities (including a strategy to deal with emergencies within the region) and the principles for proper use of public money.  The council would negotiate with the Minister each year for the region's funding.  It would be authorised to recruit and manage its staff including the senior officers.

 

The regional community council would develop strategies that are best able to meet the needs within the region and ensure decision-making is closest to the individual and is consistent with promoting and supporting autonomy.  This would include establishing a process that provides independent assistance to individuals and families by workers who are committed to knowing and listening to people they support. The needs within the region will determine the style the assistance will take.  Regions may decide to use existing resources (eg. Local Area Coordinators, Support Facilitators) in a different way (eg. funding a community resource unit) or contract similar initiatives in the community sector.   

 

Regional community councils would pilot new ways of providing flexible supports including “unbundling” money from existing services for individuals or collectives of people as part of a gradual shift from standardised program models to personalised supports.  Project staff, currently situated at head office, would be based within regions, learning from the experiences of people at the grass roots.  Statewide services, such as the Alternate Living Service, would gradually be regionalised.

 

This proposal assumes the goal that no one should normally have to leave their region to get most of what they need.  All Australians expect that most of our needs will be met within a reasonable distance from home.  Co-boundaries with other Government Department’s regions would assist in ensuring people with disabilities do not have to unnecessarily move out of their communities to get their needs met.

 

The implementation of this proposed reform would allow for experimentation in setting up regional community structures including the flexibility to trial sub-regional councils in geographically isolated areas.  The key elements of the regional community council structure would guide the design within each region.

 

 

 

  1. DISABILITY SERVICES QUEENSLAND  has:

·        authority to set state priorities and rates of individual funding

·        responsibility to lobby Treasury for resources

·        responsibility to ensure each region allocates resources based on priorities and principles

·        responsibility to negotiate equitable budgets for each region

·        the right to intervene when a region fails to uphold the principles or mismanages the resources and the right to selectively create safeguards as they relate to individuals

·        responsibility to ensure system changes are consistent with legislation

 

 

As the body most distant from people with disabilities and families, the government's role and authority extends to setting state priorities and ensuring each region allocates resources based on priorities and principles.  It would negotiate with each region a yearly budget and lobby the treasury to meet the need.  The Minister has the right and responsibility to intervene with the regional management when there is a failure to uphold the principles or there is mismanagement.

 

There are various methods from around the world that simplify the process of determining rates of individual funding that are fair and equitable and are either equal to existing cost or more cost effective.  QPPD believes that it is important that the mechanism for determining rates of individual funding be thoroughly researched and decided upon jointly by government, people with disabilities and families.  Nevertheless, we believe that these decisions ought to be made at the lowest point in the regional system so that actual intimate knowledge of the people concerned and their needs is attained.  Conceivably, innovative methods to do this may vary from region to region, and ought to be permitted providing they uphold the principles indicated here.

 

Discussion Questions

 

Your feedback will help QPPD continue to shape its input into the funding reform process.  We appreciate your responses to the following questions and any other comments or ideas you wish to contribute.

 

 

  1. Do you believe the Proposed Assumptions provide a clear basis for reform?  What others do you suggest?

 

 

  1. Do you believe that the creation of Regional Community Councils will help to bring decision making closer to people with disabilities and their families?  How might this be even further enhanced?

 

 

  1. Do you believe the Principles for Proper Use of Public Funds will be adequate to guide negotiation and decision making?   Do you think they are adequate to safeguard people with disabilities?  What other principles might be included?

 

 

  1. In your opinion are the Elements of Reform workable within the structure as outlined in Proposed Principles for System Reform?  Does anything need to be added or changed?

 

 

  1. What would be a realistic timeframe for the development and implementation of a reform process?

 

6.      Do the proposed reforms address the following identified system needs? 

 

 

7.      Any additional comments/feedback?

 

 

 

Thank you for your valuable reflections and thoughts.  We appreciate the time and effort you have given to enriching this discussion.

 


[1] Korten,D.(1984).People-centred development:Toward a framework. In D. C. Korten, and R. Klaus (Ed.), People-centred development. USA: Kumanan Press.