PWD E-Bulletin |
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Issue 56 August 2009 Welcome to PWD’s e-bulletin. The
e-bulletin goes out to members and interested others regularly by email. For
members who do not have access to email, a printed version of the e-bulletin
will be sent by post. To be added to or removed from our mailing list, or to
change your email address, please email pwd@pwd.org.au
or contact PWD on one of the numbers listed at the end of this bulletin. Special E-Bulletin edition on Individualised Funding and Self DeterminationContentsMichael Bleasdale,
Executive Director, Leadership Team, PWD ·
Individualised
Funding: International Trends and Challenges Professor Tim Stainton, ·
Individual Funding in Australia Dr Carmel Laragy, ·
Personal Experience of
Individual Funding Robert Manga, President, People with Disability ·
NSW Liberal and Nationals
Parties discussion paper: Personalising Service Delivery Michael Bleasdale,
PWD ·
In Control Australia:
Debunking the myths around self-directed funding Samantha Jenkinson, In Control ·
Individual funding policy
research in Australia Dr Karen Fisher ,
Social Policy Research Centre, UNSW Belinda
Epstein-Frisch AM, In Control NSW and Family Advocacy NSW ·
Interrelate and Personalised
Budgets Jenny Speed,
Manager Individual Advocacy, ·
Individualised Funding in
British Columbia Brian Salisbury,
Director of Strategic Planning, Community Living ·
Lessons from England on the
support broker role Steve Dowson,
Associate Consultant, National Development Team for Inclusion (NDTi), ·
Disability Reform Agenda in
Tasmania: A Person Living With
Disability (PLWD) Perspective Jane Wardlaw, ·
National Mental Health Consumer
Consultation Jenny Speed, PWD ·
National People with
Disabilities and Carers Council launches its Shut Out report ·
NSW Justice and
Attorney General’s Department reviews Charter of Victims Rights ·
Group Homes to
accommodate 10 people in bid to increase affordable housing ·
PWD’s
Position Statement on Individualised Funding and Self-Directed Supports |
Introduction
Michael Bleasdale, Executive Director Leadership Team, People with
Disability
The format for the August
E-Bulletin is slightly different from usual, as it is dedicated in large part
to one topic, Individualised Funding and Self Determination. It has also been put together through the
efforts of people outside of the PWD staff, who have very kindly agreed to
contribute articles on the subject.
The result is a publication which brings together some important
Australian and international perspectives, and we can benefit from the wealth
of experience and expertise that our contributors bring to the topic. Before I briefly introduce
our contributors’ articles I will outline what is understood by
Individualised Funding and Self Determination. Self Determination is a movement in the The articles in this
E-Bulletin deal with different aspects of these two concepts, and most are
written about practices of individualised funding in action. An important point to raise is that the
international movement that has for many years promoted and implemented
individualised funding is across all disability, and in Australia, where we
are only recently getting to grips with the possibility of individualising
funds for supports (Western Australia would be the exception here), we need
to be mindful of the various bureaucratic structures and funded programs that
are specific to certain impairment types, and which need to be addressed to
make individualised support universally available. In Australia we are
beginning to understand that individualised funding is more than just a
discreet pilot option that should be available to a few, but is rather a
significant shift in the way that supports are constructed, delivered and
evaluated. The centrality of the
service recipient, and their pivotal role in assessing the quality of the
supports they receive (with the power to take their funds elsewhere, and
spend them in different ways) means that significant change will need to take
place once such options are available to people with disability who require
assistance. Just as the disability
services reform of the 1980s required broad support from the community,
government departments, and all along the political spectrum, so the
introduction of individualised funding, as a means by which people with
disability can achieve self-determination, needs to engage with and win the
support of unions, employer groups, government departments and There are a number of
people in Jenny Speed, PWD’s Manager of Individual Advocacy in Thanks to all of those
people who so willingly gave of their time to contribute to this edition, and
the timeliness with which their contributions were submitted. I hope that readers enjoy this edition
about individualised funding and self determination. Individualised Funding: International Trends and ChallengesProfessor Tim Stainton, University of British ColumbiaOver the past 30 years or
so individualised funding (IF) has gradually become part of the disability
policy landscape in many jurisdictions throughout the world. Not surprisingly a variety of approaches
have emerged with variations in target populations, age groups, levels of
funding, comprehensiveness and support systems. We have some reasonable
evidence that suggests that users are more satisfied with IF than with
traditional models of funding supports. There is also an increasingly strong
body of research evidence to support the claim that IF/DP enhances both the
control individuals and families feel over their own lives and the
effectiveness of the support. This brief review will
explore some of the commonalities of experience between jurisdictions and
highlight some of the common issues and challenges. Definitions and Models
of IF A definition can be stated
as: funding allocated directly to an individual or in the case of a child
their parents or legal guardian, to provide the support necessary to meet
disability related needs and to assist individuals to become contributing
citizens. IF has two fundamental
characteristics: ·
The
amount of funding is determined by direct reference to the individual and/or
family’s specific needs, and aspirations; ·
The
individual and/or their family determine how funds are used to meet those
needs eligible for funding. The two aspects are
important as the first speaks to determination of level and the second to
control over how those funds are spent.
In general most jurisdictions have more commonly done the former, but
the latter usually consist of at best a menu of preset service providers. Some jurisdictions make a
distinction between individualised
and direct funding, the former
being when the individual or family administers the funds themselves
including all payee, insurance and
employment related task and latter when some sort of intermediary is
used. Context IF, of course, rarely
exist in isolation from other programme or policy initiatives, three elements
seem common to most: ·
support
for people to articulate their claims ·
support
for people to identify, obtain and manage supports necessary to actualize
their claims ·
providing control over the resources. A fourth element which has
more recently emerged is concerned with governance:
that is, issues of who controls decision making within the system. I will not address this here beyond noting
it as a key emergent issue. In the first element, the
concern is with issues of decision making, recognition of capacity and
advocacy, but also with giving people information and support to make
informed decisions. The second element is
concerned with supporting people to identify, obtain and manage necessary
supports. ‘Brokerage’ type supports
such as Local Area Coordination (used by the Disability Services Commission
in The third element, IF, is
of course concerned with how the person’s control over resources can be
increased. Without the other elements
however this control can be meaningless or in fact become a burden on
individuals and families if they are required to hire, managed and account
support. Cost and Resources The majority of evidence
across jurisdictions supports better outcomes (cost/benefit) with IF over
conventional systems without significant cost differentials: ·
US
and UK evidence suggests that over a relatively short time cost of IF systems
produce increasing cost savings and efficiencies, though in some cases IF is
initially cost neutral or slightly higher; ·
Cost
savings are dependent on implementation structures and realizing savings
elsewhere in the system (i.e. reducing case management over time rather than
operating a double system) ·
Research
indicates indirect savings in areas such as health care utilization, crisis
etc. Challenges and Issues Enough jurisdictions have
introduced IF that we can begin to identify some of the challenges in trying
to implement an IF system. Many of the
challenges not surprisingly are associated with the transition from the current
system to an IF model. IF in isolation of
broader support and system change The introduction of IF
without any support mechanisms around planning, implementation and
administration of ones own supports can in some cases add to the challenges
that families face or exclude those who are not in a position to undertake these
roles. To meet these challenge
governments must ensure the planning, implementation and management supports
are in place. Transitioning
funding One problem that many
jurisdictions have faced is the issue of unbundling funds from the current
system to an IF model. This problem is
more acute when services do not identify specific individuals associated with
a funding stream but simply contract to provide X service for a specific
numbers of eligible individuals. This
problem is less acute when transitioning from institutional services where
the intent is to close the former service.
For this reason a direct transition to IF from institutions is the
preferred method. System Inertia Transitioning to a new
model will always create certain anxieties and resistance from those invested
in the current system. Careful
planning and good communication can mitigate this to some degree but it is
important to be aware that a period of transition will be required before the
new system will be effective. Unionised
Environments A number of challenges can
arise when unionized services are replaced by individualised supports managed
directly by the person. Again, careful and respectful planning along with a
strong set of controls on employment regulations, health and safety, and
wages can mitigate the challenges. Staffing Clear guidance is needed
with regards to the requirements to comply with employment standards and
obtain requisite insurance. This is
usually included in the IF package or in some cases a global plan is
provided. Training of independent
support staff can be an issue. Some
support organizations offer generic training or assist in obtaining relevant
training for the support staff. Finally, staff cover for
emergencies such as staff sickness can be problematic. Many people develop
their own roster of ‘on call’ staff but where this is not the case a back-up
is required. One option is for the
government or a support agency to contract with a care agency to provide
short notice care for IF users. Decision
making-recognition of representatives The answer to this
challenge is not simple nor is it always within the purview of the State
agent responsible for disability services. Progressive decision making
legislation like the BC Representation
Agreement Act is an important part of meeting this challenge. The more complex problem is building
personal networks so that individuals have trusted advisors around them who
are willing to help manage their supports with IF. Until this is in place, some form of direct
funding with support to manage IF will likely be required. This brief review has
tried to highlight some of the key components and challenges of IF
systems. While the increasing
opportunity to learn from other jurisdiction is certainly a welcome aide, it
is important to remember there is no cookie cutter solution to implementing
IF. Each jurisdiction must develop a
model which works for them. So beg
borrow and steal, but in the end, make your own IF cake. A longer more detailed version of this article with reference can
be found at: here. |
Individual Funding in AustraliaDr Carmel Laragy, School of Social Work, RMIT University, MelbourneAustralia, along with many
countries across the globe, is promoting individual funding as a means of
providing support to people with a disability. I have been studying the
expansion of individual funding for the past decade in Australia and I had
the opportunity to view developments in the United Kingdom and Sweden. By
individual funding I mean that the person with a disability, or their
representative, can decide how their allocated funding is spent. This can be
for formal disability support services, for social participation activities
or for a wide range of other supports to enhance their life. A common
characteristic of most programs is that the person is involved in selecting
their support workers or personal attendants. Because individual funding
offers flexibility and greater control to service users, it often gives the
person a lifestyle more to their liking than traditional services can
provide. Its expansion seems likely to continue, especially as some
Australian State governments are now legislating for individual funding and
promoting its implementation. While I see advantages in this model of
support, there are also potential dangers if it is not well implemented. I
will briefly outline some examples of individual funding programs I have
seen, the benefits they offer, and what is needed for their successful
implementation. Individual funding
programs vary greatly in design and there is wide variation in the degree of
control and responsibility given to the person concerned. At the more
flexible end of the spectrum programs tend to have the following
characteristics: money is placed in the person’s bank account; the person, or
their representative, employs staff and purchases goods; and receipts are
regularly provided to account for the money. Less flexible programs require
that the money to be held by an agency or an accountant, and support can only
be purchased from disability services. Each organisation, state or country
implementing individual funding looks to others to gain ideas and then
designs a program to suit their local conditions and culture. This
development process has advantages in that it is open to new ideas and is
responsive to local needs. However, it also means that individual funding
cannot be labelled as good or bad, it always depends on how well the programs
are implemented — “the devil is in the detail”. Across Australia, most
states and territories are implementing or examining how to implement,
individual funding models. Western Australia made a large commitment to
individual funding when it implemented the Local Area Coordination Program in 1988 and the coordinator
manages the funds (1). Queensland spawned a number of small
programs in the 1980s to support people with a disability to live
independently in the community using an individual budget, and some continue
today, for example Homes West and Lifestyle Options. The Community Resource Unit initiated some
of the 1980 programs and still operates. New South Wales trialled Direct Funding for people with a
physical disability in recent years and the evaluation found that people were
highly satisfied with the outcomes achieved (2). Being based in Melbourne,
most of my experience is with Victorian programs. I have observed the State
Government support pilot projects in the early 1990s and enact the new Disability Act in 2006 — which
promotes an individual approach. Currently they are allocating an individual
budget to everybody receiving disability support. Between 2000 and 2007 I was
involved with three Victorian State Government programs: Futures for Young Adult, Support & Choice and Direct Payments in the Southern
Region. I also evaluated UnitingCare Community
Options Individualised Funding Project
(2007) and conducted the Victorian interviews for the University of New South
Wales Disability Studies & Research
Centre study of individual funding approaches (2009). My findings from these
studies are consistent with those from other evaluations (2, 3). One of the main findings is that
individual funding can result in more positive outcomes compared to using
traditional agency managed support services. This is because have control to
use the money in ways they choose and develop innovative strategies to meet
their needs. In particular, many
people find that negotiating directly with a support worker about working
hours and duties results in new lifestyle opportunities. Examples of new
opportunities the flexibility of individual funding presents include: ·
Living
independently in the community instead of in residential care. ·
Negotiating
evening support at times that suit instead of bedtime being determined by an
agency roster. ·
Negotiating
support to attend work, training and education. ·
Attending
sporting and other social/cultural activities. ·
Having
less hours of support one week and paying higher wages for a support worker
to work late on Saturday night so that they could have an evening out. One mother I spoke to in
Victoria told of her son with autism being expelled from the disability
special school and from respite services because of his violent and
uncontrollable behaviour. The only option for his future seemed to be living
in a supported group home under heavy medication. After a few difficult years
at home when he was frequently disruptive, individual funding has facilitated
services being carefully tailored to his communication style and individual
needs. He is now a young adult and does not use medication. He lives in a
flat, undertakes domestic duties and has a part-time job delivering papers. The implementation of
individual funding is complex, partly because it is so flexible and different
to traditional disability support. Evaluations show that a number of factors
need to be in place before the potential benefits of individual funding can be
realised (2, 4, 5). These are: ·
Service
users are involved in service design. ·
Information
is available about funding allocations, supports, services and costs. ·
Advice
and support is available in a form suitable to the person, especially if they
have an intellectual disability, to assist them choose between complex
options. ·
Services
and other opportunities are available and accessible as required. ·
Support
workers are available as needed. ·
Sufficient
funding is available to meet needs. ·
There
is oversight to protect vulnerable people – both the person with a disability
and the worker Existing disability
support services in Victoria are currently redesigning their systems to
adjust to individual funding. Radical organisational change is difficult and
the move to individual funding is challenging for everyone involved. This
includes the Board members, executives, finance managers, team leaders and
the support workers. It is
interesting that new agencies are also emerging that are specifically
designed to provide services to people with individual funding. One such
organisation is Karden Disability Support Foundation in
Ballarat (www.karden.org.au), which commenced in 2006. No full
evaluation of the agency has been conducted, but some preliminary studies
indicate that clients like the flexibility and support they are receiving.
Based on a person centred plan and using the available budget, a contract is
drawn up with the person or their representative detailing their plans and
the support they will receive. Features of the model are that the agency is
charging less than 10 per cent of the budget for overheads and
administration, and that support workers are selected by the client and
employed by the agency. Individual funding brings
with it lots of issues about support workers availability; working
conditions, wages and insurance; occupational health and safety, plus the
safety of person they are supporting. Although research is showing relatively
little abuse has occurred to date (3), it seems prudent to provide
oversight to ensure this does not develop. The positive relationships
that develop between the person and the worker is
proving to be one of the strengths of individual funding. Reports from both
the person and the worker show that negotiating directly is often preferred
to working through an agency (2, 6). In particular, people like to
receive support from staff they have selected and got to know instead of agency
staff who can be strangers. In conclusion, individual
funding is offering new opportunities that many people with a disability
welcome. It is an option that should be available to everyone using
disability services, even though some will want to continue their current
service arrangements and not bother with change. When individual funding
programs are available, it is important that sufficient money is allocated
and that support and information services are available. Individual funding
is an idea whose time has come because people across our society are
demanding more control over their lives. Individual funding can offer new
opportunities as long as it is well implemented. References 1.
Disability
Services Commission. Review of the Local Area Coordination Program Western
Australia. Perth, Western Australian: Disability Services Commission; 2003. 2.
Fisher
K, Campbell-McLean C. Attendant Care Direct Funding Pilot Project Evaluation
- Final Report. Sydney: Social Policy Research Centre, University of New
South Wales & Disability Studies and Research Institute For the NSW
Department of Ageing, Disability and Home Care; 2008 Submitted March 2008,
Published: August 2008. 3.
Social
Care Institute for Excellence. Choice, control and individual budgets:
emerging themes. London, England: Social Care Institute for Excellence. http://www.scie.org.uk/publications/briefings/files/scare20.pdf 4.
Individual
Budgets Evaluation Network. Evaluation of the Individual Budgets Pilot
Programme: Final Report. York: Social Policy Research Unit, University of
York; 2008. 5.
LDC
Group, Dimitriadis L, Laurie D, Lane J, Lyall M. Evaluation of the Direct Payments Project, Final
Report: Community & Individual Support, Disability Services, Department
of Human Services, Victoria.; 2007 August 2007. 6.
Laragy C. ‘Outcomes’ evaluation 2007 Individualised Funding Project: A
project conducted by UnitingCare Community
Options.: La Trobe University; 2008. Carmel can be contacted on carmel.laragy@rmit.edu.au |
Personal Experience of Individual FundingRobert Manga, President, People with Disability AustraliaMy name is Robert, a 43
year old male with permanent tetraplegia C-8 spinal
cord injury. I am married and have a little boy who is 7 years old. Whilst travelling overseas in 2005, I was
the victim of a ‘hit-and-run’ motor vehicle accident that almost took my
life. Prior to my accident, my wife and I were both working professionals who
enjoyed a quiet and stable life living in a double-storey house that we had
built a year earlier. Following the traumatic
injury, I spent the next 12 months in medical institutions overseas and in
Australia. During that time I came to a realisation that the independent,
professional life that I had enjoyed for many decades was now over. From that
point on it was obvious to me that I would have to rely on assistance from
others in order to perform the necessary activities of everyday living and
medical care. As the date for my
discharge from acute rehabilitation approached, I looked forward to enjoying
the relative independence of community living that other citizens have the
benefit of. I was initially allocated
14 hours per week of personal care provided by government-operated home care
provider. My hours were later extended to 32 attendant care hours. Twice per
day, personal assistants were to attend me at my home, helping me to get
ready for work in the morning and assisting with showering and toileting at
night. Although the hours of care where acceptable, there where countless
problems with the service delivery that made the experience stressful and
traumatic for myself and for my family.
Firstly, the workers
providing my personal care were accountable only to their employer, the
government-operated home care provider. They were totally inflexible in their
approach and unable to mould the service to suit my individual and family
needs. On many occasions, I was obliged on a Saturday or Sunday morning to
get up at 7 a.m as it was the only time that they
could find a carer available for me. The situation during the
evenings and weekends was also very unsettling for my family. The home care
provider could not always tell us in advance which carer was on duty or what
time they would arrive. My wife, who was struggling to cope with the lack of
routine as well as work full time and care for our son, was often upset by
having to wait for carers to arrive. On one occasion when my wife had to
attend to family affairs and left me in bed trusting that the carers would
arrive and assist me as they were timetabled to, I was forced to spend the
whole day in bed when they neither arrived nor answered my calls. As the
incident occurred on the weekend, there was no answer at the home care
provider and no after hours number to call for
assistance. This incident was very detrimental to the quality of life of the
entire family. Since that time, my wife could never leave home until I was
safely helped to my wheelchair, for fear of repeating the incident. Not knowing who was coming
into our home was also a major concern for our family. Many carers interacted
with our son and although there was no malice intended, sometimes the amount
of attention he received from them was unsettling and at times inappropriate
and disruptive to our family routine. When an opportunity arose
to participate in the DADHC Individual
Funding Pilot Project, I took it without hesitation. While society has
often disregarded the potential of people living with disability, I saw my
involvement in the pilot project as an opportunity to prove that I could once
again be in charge of my own life and inspire other people with disability to
do the same. I never considered myself as a passive recipient of care and now
enjoy the responsibility that comes with participating in this initiative. I
personally believe that the society need to build the capacity of people with
disability, their families and their contribution should be both encouraged
and supported. The Convention of The Rights of People with Disabilities recognises
the “importance of people with disabilities in their individual autonomy and
independence including the right to make their choices”. The preamble also
states that they must be given the “opportunity to be involved in the
decision-making process about policies and programs including those involving
them” (UN, 2006). With my participation in the pilot project, I am able to
hold, administer and manage the budget allocated to my care. Since December
2006, I’ve been able to recruit and train my own staff, and negotiate initial
contract. I am also able to organise the timetable that suits my individual
needs and those needs of my family. Some of the workers that I
recruited were employed by the government-operated home care provider. I had
to basically retrain them so that the service they provided suited my
specific needs. As the employer and recipient of services, the quality of
these exponentially improved. Nearly 3 years after being recruited in the
pilot project, I have had the same personal care assistants providing my
care. I believe that I have treated them fairly, given them a fair salary and
provided them with some levels of flexibility. In return, they are able to
attend to my immediate needs even on short notice. Instead of being
considered just as carers, they are almost part of our family. Over the
years, we’ve developed a high level of mutual respect and trust to a degree
that they are entrusted with the keys to our home. We don’t have to worry
anymore about whether or not the carer will be coming. Having carers coming
to deliver care at home can be an invasion of privacy but at least my family
and myself know exactly who is coming. My son knows
our 3 carers well and is very familiar with their timetable too. He no longer
hides under the table in fear when the doorbell rings! Overall, my personal
involvement in the IF has improved my family and my own quality of life and
greatly enhanced our community participation. |
NSW
Liberal and Nationals Parties discussion paper: Personalising Service Delivery
Michael Bleasdale, PWDIn Australia the Liberal
and National Parties are the first political parties to deliver policy
statements about individualised funding and self directed supports. The NSW Branches of the Liberal and
National Parties have released a discussion paper, entitled Personalising Service Delivery. This paper articulates the commitment of
the parties to develop a service system that “increases choice, voice and
control for people with disability and their carers”. The paper also highlights the need for an
effective service system to place some trust in people with disability and
their carers, and their ability to manage their own car requirements. These principles are linked to the
requirement of governments and their departments to respond to the articles
in the United Nations Convention on the Rights of Persons with
Disabilities. It would appear that the
Liberal and National Parties are across the evidence internationally about
the effectiveness of individualised funding in achieving the outcomes that
people with disability expect from their supports, and are also aware of the
significant change that will need to take place within the current disability
service system to make the option of individualised funding a reality for
people with disability who require support. The paper is less detailed
when it comes to how the new system is to be implemented, and this needs to
be one of the main discussion points with the representatives of the
Parties. International evidence tends
to reinforce the need for strong and continuous involvement by resourced
community organisations which remain independent of both government and
service providers. No comparative
evidence is provided in the paper of the funds allocated to the disability
services sectors in comparative jurisdictions, which casts doubt over the
assertion that a shift to individualised funding will be “cost neutral to
government”, whilst achieving the improvements expected for people with
disability. Professor Tim Stainton has indicated that the funds dedicated to the
sector in Australia are low in comparison to other jurisdictions in the UK
and Canada. The publication of this
paper is very welcome start to what is hoped to be a much broader expression
of support for individualised funding at the political level, on both sides
of politics. This is a position
statement with which community groups can engage, and allows for further and
more detailed discussion on how it can be achieved, as well as flagging
further efforts to get through to elected members the need for a much greater
commitment of resources if Australia is to begin to meet its obligations
under the United Nations Convention on
the Rights of Persons with Disabilities. |
In Control Australia: Debunking the myths around self-directed fundingSamantha Jenkinson, In Control Australia and the Australian Federation of Disability Organisations (AFDO)The movement of people
with disabilities, families, service providers and supporters of self-directed
funding that is In Control Australia is gaining ground. Most recently there have been successful
forums in both Adelaide and Brisbane, hosted by local organisations on
self-directed funding. These forums brought together people with disabilities,
families and service providers to learn about the concept of self-directed
funding and discuss the strategies needed to change government policy. They
were also a great opportunity for many service providers to talk about how
they could provide services in a self-directed funding environment, and other
roles some service providers could take on like that of financial
intermediary and broker. There are people with disabilities, families and
service providers who all do forms of self-management in many states, and the
In Control forums have provided the opportunity for these stories to be shared, however there are still many myths, misconceptions
and fears about self-directed funding which are raised. Some myths and
misconceptions include: It takes all responsibility
away from government and the community. There is often an
underlying fear that this model is putting all funding and responsibility
with an individual or family, while government provides no support and is
removed from taking responsibility. This is not what self-directed funding is
about. The key concept behind self-directed funding is that citizens are
empowered and in control of the decisions that affect them. That is why the
model has multiple options for support, and management of the funding to
cater for people’s different needs and capacity so they can be in control. It is just a form of rationing. This model is focused on empowerment – people making their own
decisions – with how funding is rationed as a tool for achieving this end. It
is a rights based model, with a vision of empowered citizens at its centre.
The allocation of resources is based on the needs identified by the person
with disability, and decisions made about how to meet those needs are made by
the person with disability. It is not about new resources being allocated,
this is why the lobby for a National Disability Insurance Scheme is also
important. It is only for the most able, or those that can employ their own
support workers. Self-directed funding is a model that is for everyone. The key
components of this system are flexibility, choice, control and creativity.
You choose whatever arrangement works best for you, which can include having
someone else take care of all the technical stuff. The model In Control Australia promotes is
one where there are multiple options for managing funding, such as: ·
Funding
going directly to the person with a disability ·
Funding
is managed on the person’s behalf by a trusted other such as a family member. ·
Funding
going to a micro-board or 'circle of support' who manage the budget and
funding with constant checking of the plan and decisions with the person. ·
Funding
going to a financial intermediary (FI), a bit like a bank, where the person
(or family member on behalf of a person) has control of the things that are
purchased, but the invoices are sent to the FI who pays them and sends
monthly statements to the person. ·
Funding
going direct to the service provider you choose. This is a bit like many current systems,
but planning and control of decisions is squarely with the person and family. ·
Funding
going to a case manager/broker who works with the person and/or family to
develop and implement their plan, purchase services and undertake
accountability. The key point of
self-directed funding is that decision-making is done by the person living
with disability (and those closest to them where that is appropriate) with as
little or as much support as is needed.
This model also incorporates the option for people to employ their own
support workers, use an agency to do payroll (insurance, tax, etc.), or
negotiate a shared management model with a service provider. It will cost more. There is no evidence that self-directed funding models cost more
for government to run. In fact research done in the It is the perfect system. Self-directed funding has been very successful in other
countries such as Bureaucrats and politicians do not want to give up their power
it is all too hard, where do I start? For those individuals and families with funding write to your
State/Territory funder and ask for you funds to be
paid directly to you as self managed funds (or a direct payment). Do not take
no for an answer, send your letter and the reply to your local
State/Territory member of parliament and your local advocacy group and In
Control Australia. We are still at a very early stage of thinking and practice in
Australia. Some States and service providers are seeing exciting outcomes and
are motivated to move further, some are still unsure. The tendency to think
of self-directed funding only in terms of Direct Payments is an obstacle to developing new services
and offering more varied management systems. Self-directed funding needs to
be able to adapt to include (a) rehabilitation (b) crisis interventions and
(c) prevention strategies. There are also many challenges for the disability sector in
making the cultural shift required to put people with disability and their
families in control of the decisions that affect them. There is much more to learn about when and
how case managers should be used, how to change the case management function
and what range of further support is useful. Some service providers are
concerned about the sustainability of their organisations in this changing
environment, and may need to make major changes in the way they provide
services. People will want quality
services and purchase from quality providers. More attention will need to be
paid to the costs of the infrastructure needed for self-directed funding, and
this could include establishment of peer support centres, and/or changes to
the taxation and pension systems, and the use of ombudsmen and consumer
affairs for protection of rights. We are at the stage of building momentum here, which is what In
Control Australia is doing through its website and forums. This momentum is
part of a wider call for change that includes the promotion and lobby for a
National Disability Insurance Scheme, and the Australian Federation of
Disability Organisations call for a Disability Inclusion Allowance. It is
hoped that support for self-directed funding will be part of the Federal
governments National Disability
Strategy. For more information on In Control Australia and self-directed
funding go to www.in-control.org.au or
contact Samantha Jenkinson at enquiries@in-control.org.au. |
Individual funding policy research in AustraliaDr Karen Fisher , Social Policy Research Centre, UNSW.Australian disability
policy research about individual funding is needed urgently because of the
rapid change towards this method of organising disability support (we use the
word ‘individual’ rather than ‘individualised’ for plain English). Although a
lot of research about individual funding in other countries is available,
very little about the experiences of people who use it in Australia is
published. And yet many examples of individual funding operate around
Australia. Recent Australian literature includes evaluations, discussions and
policy guidelines, and important references include: ·
Department
of Human Services DHS 2008, Disability Services Individual Support Package
Guidelines (draft), State Government of Victoria, Victoria. ·
Epstein-Frisch,
B., Van Dam, T. and Chenoweth, L. 2006, Presenting the Evidence:
Accommodation and Support for People with a Disability, http://www.mdaa.org.au/archive/06/PresentingTheEvidence.pdf ·
Fisher,
K.R. & Campbell-McLean, C. 2008, Attendant Care Program Direct Funding
Pilot Project Evaluation Final Report, report prepared for Department of
Ageing, Disability and Home Care NSW, March, SPRC Report Series 11/08, Social
Policy Research Centre, University of New South Wales. ·
Fisher,
K.R., Parker, S., Purcal, C., Thaler,
O., Abelson, P., Pickering, E. & Griffiths, M.
2008, Effectiveness of Supported Living in Relation to Shared Accommodation,
report prepared for Disability Policy and Research Working Group, SPRC Report
Series 18/08. ·
In
Control Australia 2009, In Control Australia: About self directed funding, http://www.in-control.org.au/about_sdfunding.asp [Accessed 01/12/ 2008]. ·
Laragy, C. 2008, Outcomes evaluation 2007 Individualised Funding
Project, paper prepared for Uniting Care Community Options, La Trobe University, Melbourne. ·
LDC
Group 2007, Evaluation of Direct Payments Project, report prepared for the
Department of Human Services, August, Victoria, ·
Productivity
Commission 2007 Report on Government Services 2007, Steering Committee for
the Review of Government Service Provision, Productivity Commission, In 2008-09, the Australian
Department of Families, Housing, Community Services and Indigenous Affairs
(FAHCSIA) asked the University of New South Wales to examine the
effectiveness of individual funding of disability support to inform policy
change. The report will be published as a FAHCSIA Occasional Paper later this
year. The reason for the
research is to learn from people who use and offer individual funding about
how they manage the risks and maximise the benefits of this way of organising
support. Considerations in managing effective individual funding examined in
the research include: consumer preferences; support according to capacity and
vulnerability; administrative systems for managing support responsibilities;
viability of the support type and amount of funding; workforce and quality of
care; service integration; and contextual impact. The research includes
interviews, questionnaires and observation with people with disability whose
support is organised through individual funding and their families, service
providers who offer this method of funding and government officials. The
research summarises what individual funding is offered in each state. Although
individual funding in Australia has many forms, the key elements for the
purpose of the research are that they are portable individual packages that facilitate consumer
control over choices about how disability support funds are spent. The funds
to purchase disability support is: ·
held
by the person or their family, a facilitator or service provider, and ·
portable
between service providers or facilitators when the person chooses, and ·
used to buy support from service providers or in an open market. Acknowledgements:
Social Policy Research Centre, UNSW (Ryan Gleeson, Robyn Edwards, Christiane Purcal, Tomasz Sitek, Denise Thompson); Disability Studies and Research
Centre, UNSW (Rosemary Kayess, Brooke Dinning,
Carmel Laragy, Lel D’aegher); and the people who participated in the
interviews and questionnaires. Karen can be contacted
on Karen.fisher@unsw.edu.au |
In Control Australia in NSWBelinda Epstein-Frisch AM, In Control NSW and Family Advocacy NSWIn Control Australia is a
group of individuals and organizations who aim to bring about systemic policy
change in Australia to enable individuals with disability and their families
to manage their own support. The organisation is an affiliate of In
Control-UK and works to provide an avenue for information exchange, critical
inquiry, dialogue, collaboration, leadership and influence. In Control Australia held
its first seminar in NSW in December 2008 in Sydney. The seminar was targeted
at people committed to seeing self directed support and individualised
funding widely available in NSW. Tim Stainton
described the system of individualised funding in British Columbia, Robbi Williams reported his observations of
individualised funding on the ground in the UK and Belinda Epstein-Frisch
outlined what is happening with individualised funding and self directed
support in other states of Australia. On the day, Lauren Murray,
then Director Community Access, DADHC outlined four new pilot programs of
‘packaged support’ planned by DADHC to explore the impact of moving more
control to the person with disability and their family. Those present at the
seminar debated and affirmed the key elements of self directed support that
would provide the basis for future negotiations within NSW, finalizing the
position statement below. Key Elements of self
directed support Self directed support
describes an approach that aims to place the individual at the centre of
decision making and treats family members as partners. The process focuses on
discovering the person’s skills and capacities, and on identifying the
priorities of the person specifically in terms of the goals, lifestyle
choices and aspirations. Self directed planning is underpinned by the values
of independence, choice and social inclusion and is designed to enable people
to direct their own services and supports rather than attempting to fit
within pre-existing service systems. Core elements of a self
directed approach include: ·
self
directed planning: planning that is personalized and directed by the person
and their family/support network or in the case of children is family
centred; ·
self
directed funding: resources that are allocated to the individual and their
family/support network early in the process to support the design and
identification of supports that are flexible and responsive to individual
needs; ·
self directed support: support approaches that involve a combination
of formal and informal, public and privately provided services coordinated to
deliver the best outcomes in response to the individual’s circumstance. Principles Principles for the use of
self-directed support have been drawn from the United Nations Convention on the Rights of Persons with
Disabilities (2006) and include: ·
respect
for inherent dignity; ·
individual
autonomy and independence; ·
self-determination
and choice; ·
opportunities
to realise individual capacity for physical, social, emotional and
intellectual development; ·
opportunities
to participate in the social, economic, cultural, political and spiritual
life of society; ·
adequate resources being available to meet needs. In Control UK states these
principles on behalf of people with disability as: 1.
Independent
Living: I can get the support I need to be an independent citizen. 2.
Individual
Budget: I know how much money I can use for my support. 3.
Self-Determination:
I have the authority, support or representation to make my own decisions. 4.
Accessibility:
I can understand the rules and systems and am able to get help easily. 5.
Flexible
Funding: I can use my money flexibly and creatively. 6.
Accountability:
I should tell people how I used my money and anything I’ve learnt. 7.
Capacity:
My capacity is assumed, and I can also get information and support to build
my vision of what is possible in my life. To facilitate self
directed support, the ‘system’ must enable people with disability and their
family/support network to: ·
have
control over the what, when, where and by whom of support; ·
be
assisted to plan, implement and change supports by a person who is
accountable to the person with disability and independent of government and
service providers; ·
delegate
financial, legal and administrative responsibilities to an intermediary; ·
build their knowledge and skills to direct their own support. Funding mechanisms
consistent with self directed support: ·
funding
can be held by the person and/or their representative; ·
funding
can be held by a financial intermediary; ·
funding can be held by a service provider but are spent according to
the person’s requirements under a self directed approach. In Control Australia’s
work toward systemic change in NSW In Control Australia has
been actively working with DADHC to shape its moves toward greater individualsation. Presentations have been made to the two
DADHC committees guiding its work - an internal Working Group and the
External Working Group on Individualised Support. In April this year, In
Control Australia was invited to become a member of the DADHC External
Working Group on Individualised Support. In addition, members of In Control
sit on the DADHC Evaluation Steering Group overseeing research that will
assist in the development of a more individualised approach. In Control Australia will
hold its second seminar in Sydney in November where the transformation taking
place in disability services in Victoria will be showcased. |
Interrelate and Personalised BudgetsJenny Speed, Manager Individual Advocacy, Logan City Queensland, PWDAt the International
Initiative on Mental Health Leadership (IIMHL) exchange and networking
meeting in Canada in 2007, consumer leaders from existing and emerging
national consumer organisations from Canada, the US, England, Scotland,
Ireland, New Zealand and Australia agreed to form an international coalition
of national consumer organisations to share knowledge and experience, support
each other in efforts to influence developments in mental health policy and
service delivery within our own countries, and to lend strength to the
development of consumer movements in other parts of the world. This group,
Interrelate, has continued to meet regularly by teleconference, and is well
on the way to becoming an established organisation. In March 2009, we all met
again in Brisbane for another IIMHL exchange and meeting, following which
Interrelate members met with local Queensland, Australian and New Zealand
consumers for a two day forum exploring ideas around recovery, rights and
leadership, leading to an ongoing group of Queensland consumers continuing to
meet with the objective of developing an independent Queensland consumer
group. This group, too, continues to meet, and is called “A Way Ahead
Queensland”. Knowing that Australian
consumers are neither unique in our needs nor alone in our efforts is
encouraging, and the awareness that we can learn from and lend strength to
people experiencing or recovering from mental distress throughout the rest of
the world is empowering. Having the development of initiatives in one country
informed by experience in other countries is a rich and valuable resource for
us all. During the early stages of One of the most exciting
current issues we are discussing about is the complex area of personalised
budgets. These are cash
payments given to service users in lieu of community care services they have
been assessed as needing, and are intended to give users greater choice in
their care. The payment must be sufficient to enable the service user to
purchase services to meet their needs, and must be spent on services that
users need. These payments confer responsibilities on recipients to employ
people or commission services for themselves. They
take on all the responsibilities of an employer, such as payroll, meeting
minimum wage and other legislative requirements and establishing contracts of
employment. In the US, there are five
states which have individualised budgeting, or self-directed care as it is
also known as either pilots or established programs for adults with serious
mental illness. These are in Florida, Iowa, Maryland, Michigan and Oregon.
Early evidence indicates that outcomes for self-directing consumers improve.
Participants have been shown to make less use of crisis stabilization units
and crisis support and greater use of routine care and supported employment
than non-participants in the traditional community mental health system. Self-direction has been
shown to improve consumer satisfaction with services compared to traditional
community mental health services. In interviews, consumers attribute this to
the following features of self-direction: the focus on recovery rather than
symptoms; its flexibility in meeting individual needs; and the support
provided by counsellors and peers in articulating goals and developing
spending plans. In Scotland and England,
personal budgets or individual budgets are at the core of the government's
aim of personalising adult social care services around the needs of users.
Through the Putting People First
initiative, councils will be expected to significantly
increase the number of people receiving direct payments and roll out a system
of personal budgets for all users of adult social care, from 2008-11. In the
long-term all users should have a personal budget from which to pay for their
social care services, apart from in emergencies. |
Individualised Funding in
Brian Salisbury, Director of Strategic Planning, Community Living British ColumbiaIndividualized funding [IF] was first proposed in
British Columbia in 1976 as way for adults with developmental disabilities
and their families to purchase needed community supports and services. Families, whose sons and daughters lived in
Woodlands School, a large provincial institution, believed that by combining
IF with independent planning support, which they called service brokerage,
they could create the kinds of supports needed by their family members to
live in the community with autonomy and dignity. Now, after many years of dealing with the
many barriers that true social innovations must overcome, IF is now a
province wide payment option for adults with developmental disabilities that
is supported by clear public policy. IF assists adults to participate in activities
and live in community in a way that works best for them. People can use money
allocated to them by Community Living British Columbia to create new,
innovative service options and to make individual choices about how the
supports and services they require are provided. CLBC is the Crown agency in
B.C. responsible for funding supports and services for adults with
developmental disabilities. Any adult eligible for CLBC-funded services can
apply to receive IF. The amount of funding is based on a person’s
disability-related needs, the estimated cost of needed supports, and CLBC’s financial resources. If CLBC does not have
available funds, a person may receive part of their request, be offered an
existing service or placed on a waitlist. If a request is approved and
funded, the person will be able to purchase supports that qualify for CLBC
funding, like help to live in community or help finding a job. IF cannot be
used to increase the personal income of an individual or family and it does
not cover costs related to medical supplies or equipment, home renovations,
electronic equipment or leisure, recreation and personal or family costs. A person’s first step is to contact a CLBC
facilitator, who is available to help with planning, at their local Community
Living Centre. A facilitator will explain how CLBC manages and prioritizes
funding requests and will clarify whether or not an Individual Support Plan
needs to be developed. With IF, a person can determine and arrange his or her
own mix of supports. The individual, or the person assisting them (their
agent), might hire people directly to help them, or they may work with a Host
Agency that will help choose and hire support staff. Direct Funding is an IF payment option where
money is paid directly by CLBC to the person or their agent for the purchase
of supports and services agreed to by the person, their agent, and CLBC. A
person does not have to manage Direct Funding alone, but they must be able to
demonstrate they have chosen a friend, family member or representative who
can act responsibly on their behalf and manage the money. The person or their agent manages the funds,
arranges for the supports needed, pays employees, and reports to CLBC on how
the money is spent. In this instance, the individual will likely have the
legal responsibilities of an employer if they use the money to pay support
workers. It is the person’s responsibility to manage the services within the
amount of money approved in their Direct Funding agreement. There is no
provision for over-expenditures. If more money than CLBC has agreed to fund
is spent, the person will need to cover the additional costs from their
personal funds. CLBC can also ask the person to repay funds if they do not
spend the money on the supports agreed to, or in a way that does not meet the
conditions of the agreement, or if they did not require the full amount. A Host Agency is an agency approved by CLBC that
a person can select to administer the money allocated by CLBC. The Host Agency works with the IF recipient
to arrange and manage the supports required. This option provides the
benefits of IF, but with less responsibility for paperwork and
record-keeping. Individuals applying for IF need to identify in their plan
which service provider they would like to use. CLBC facilitators are able to
provide the names of CLBC-approved Host Agencies in various communities. A person can choose the payment option that works
best for them. If Direct Funding is chosen, they and CLBC must agree that
they, or their agent, are able to manage this responsibility. If it appears
it would be difficult for the person or agent to manage the funds, CLBC will
assist the person to work with a Host Agency. For those receiving Direct Funding, the person or
their agent are responsible for ensuring any
services purchased are appropriate and effective. For those who receive Host
Agency Funding, the Host Agency, as well as the person, their family or
personal network must ensure the services being purchased are appropriate and
effective in meeting the person’s identified needs. CLBC will also receive
reports from the person, family and agent or Host agency to help them confirm
that supports are meeting the person’s goals and CLBC standards. For people who want to make changes in their
staff, because people arrange their own supports, they and the person helping
them can make that change. However, those who receive Direct Funding must
follow the Employment Standards Act. Those who receive Host Agency Funding
can ask their Host Agency to help them. If a person is already receiving CLBC-funded
supports, a facilitator will work with them and a quality service analyst
[the CLBC staff responsible for allocating funding and monitoring contracts]
to confirm the possibility of moving funding to IF. If some or all of a
person’s funding can be moved, a facilitator will assist them to develop or
modify their plan to request a change to IF. A quality service analyst will
review this request and determine the level of support they will receive. At this juncture, IF is a welcome payment
mechanism for many BC families as it will help increase the array of choices
and options for them. However, for the
foreseeable future, it is likely that uptake will remain at conservative
levels as people become more familiar with this approach. |
Lessons from England on the support broker roleSteve Dowson, Associate Consultant, National Development Team for Inclusion (NDTi), UKEditorial Note: in the UK local councils are the
funding and administrative bodies for a range of services, including
disability service, education, health, Police etc., hence the reference
throughout this article to “councils”. Councils in If numbers are all that
matter, then this may be more achievable that it seems at first sight. Personal Budgets, as defined by the
government, only require that councils provide social care users with an
‘up-front allocation’ (1) of funding that offers the recipient choice over
the way the money is spent. The
individual is still free to leave the money with the council, and to rely on
the care manager – just as before - to plan and organise their services. So moving to Personal Budgets could mean
little more than letting people know the cost of their service. Comparing Personal Budgets may become a new
topic of conversation at the day centre. But the government’s
stated goal is to give disabled and older people more choice and control over
their lives, and over the purchase of their supports and services, with the
option to look beyond the familiar limited menu of specialist support
agencies. If that is to happen then
Personal Budget recipients must be willing and able to grasp the control when
it is offered. For some people that may
be straightforward enough. For
example, an older person might be given a Personal Budget of £5000 a year to
hire the domestic help they need in order to remain in their own home. Making the choice and organising the help
may mean little more than a call to a commercial support agency, or placing
an ad. in the corner-shop window. But when the budget rises (as it often
will, for disabled people) beyond £30,000 a year, and sometimes much higher,
and calls for a series of well-coordinated and complex support arrangements, the
challenge is much greater. It’s plain
enough that many people won’t be able to complete this complex planning and
organisational task – in a way that has successful outcomes for them and
would also satisfy the taxpayer – without some assistance. Although this might seem
obvious, interest in the development of brokerage assistance has lagged well
behind the spread of individualised funding programmes in England. For many disabled people and families, the
term ‘professional’ in social care has come to mean impersonal,
disempowering, and untrustworthy. One
of the attractions of individualised funding, as presented in England, was
that it would banish these professionals from people’s lives. Thus, almost inevitably, brokers were
regarded suspiciously as a way to let the professionals back in. As Personal Budgets have
become incorporated in policy, the need to ensure people have help with
brokerage has become undeniable. About
three years ago the government took the position that this assistance could
come from a variety of sources, including family members, neighbours,
community groups, and organisations of disabled people. Help from support brokers - people
delivering it as a specific, paid service – was acknowledged as another
option, but not favoured. This remains the
government’s official position, and guidance to councils only requires them
to establish ‘enabling frameworks’ around Personal Budget recipients
(2). But work by the National Development
Team for Inclusion (NDTi (3)) over the last three
years has helped to establish the case for independent brokers (4), and
provided a definition of the broker role that has the support of key national
organisations. Work by the NDTi for Skills for Care – which sets standards for
qualifications in social care - has laid the foundations for national accredited
broker training (5). Although councils
are being pressurised by government targets to put quantity ahead of quality,
there is growing recognition by councils that their local ‘enabling
frameworks’ should include independent brokers. The NDTi
fully supports the government position that help with the tasks of brokerage
can come from many sources, and acknowledges that it would be wrong, as well
as impractical, to try to impose standards on the quality of help that is
given informally. On the other hand,
the NDTi argues, when people deliver brokerage
assistance as a specific, paid service they occupy the role of broker. To
make a comparison beyond social care, many of us may have some plumbing
skills that we can offer to a neighbour with a leaking tap. But providing help with plumbing does not,
in itself, turn us into plumbers. On
the other hand, if hire someone who calls themselves a plumber, we will have
expectations of the service we get – in terms of competence, the nature of
the relationship, and the context of standards and safeguards surrounding the
delivery of the service. In exactly the same way,
people who receive the paid services of a broker (whether the payment is as a
direct fee for service, or via a publicly-funded salary) are entitled to have
expectations about the service they will receive. These translate into a set of implications
for the development of support brokers: Brokers should provide
their services as contractors delivering a service to customers. It is right to conceive
the relationship in this way, because it is a paid service. It is also helpful, as it underlines the
accountability of the broker to the customer. The empowered position of the individual
as customer should be emphasised by developing broker resources so that
people can choose, in their own time and on whatever basis they prefer, the
broker that suits them. There should be
standards of competence for the work of brokers. People who receive the
services of a broker should have reasonable confidence that the broker brings
a minimum set of skills and knowledge.
This in turn implies the need to define training requirements and to
provide training opportunities.
Through a series of consultation exercises, and also drawing on
experience in training brokers, the NDTi identified
the minimum competences required by brokers in terms of 17 skills and
knowledge areas. These have yet to be
converted into an equivalent training course, but they suggest training that
could be completed over a few weeks.
This is likely to be reassuring to many disabled people and carers who
fear that lengthy training would imbue brokers with the less desirable
‘professional’ characteristics. People who receive
broker services should have confidence that the broker is able to focus
solely on their interests, free of conflict of interest. It has been suggested that
everyone brings their own personal values, and that conflict of interest is
therefore inevitable. Others have argued that it is for the recipient to
decide whether it is important that their broker is independent. However, for many people who have been on
the receiving end of care-managed services, where the care manager role
embodies a basic conflict of interest, the certainty that the broker is free
of conflict is a distinguishing feature of the broker role, and one that is
very important. At the very least,
support brokers should be independent from the council and from service
providers. Brokers should not be
involved in the delivery of secondary support services. These secondary support
services underpin the supports that are offered directly to the individual,
and begin once the individual’s plan has been implemented. They typically take the form of payroll
services, accountancy, recruitment, and support coordination. They are part
of the support plan, which means that the broker should be ready and able to
help people identify what secondary supports they need. However, if brokers also offer these
services then there is obvious conflict of interest. In addition, secondary supports call for a
very different set of skills from those required to plan and organise
supports. People requiring broker
services should be able to access brokers who have been accredited for their
competence and integrity. Without some form of
regulatory mechanism, standards for training, independence, reliability, and
honesty become meaningless. Legally,
however, anyone who wishes can describe themselves as a support broker and
offer their services. The best
available solution at the moment is to establish a voluntary accreditation
scheme. This could be achieved through
a national register, but this seems likely to encourage the over-professionalisation of brokers. In its work for Skills for Care, the NDTi recommended a system of accreditation based on local
accrediting committees under the control of disabled people and carers. This should fit well with a separate
government initiative which aims to establish use-led organisations in every
council area (6). We have yet to see
fully-fledged broker services in any part of England that demonstrate all
these principles in action, though some initiatives are getting close. Sadly, there has been a
reluctance in 1.
Department
of Health (2008) LAC(DH)(2008)1: Transforming Social Care, London, Department
of Health 2.
Department
of Health (2009) LAC(DH)(2009)1: Transforming Social Care, London, Department
of Health 4.
Dowson
S. (2008) Custom and Control: the
training and accreditation of independent support brokers, Bath, National
Development Team 5.
Skills
for Care (2009) The independent broker role and training requirements:
Summary report, London, Skills for Care London, http://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdf
6.
http://www.dh.gov.uk/en/SocialCare/Socialcarereform/Userledorganisations/DH_079159 For a more in-depth look at the issues around support brokers in
the UK, see the following article: Dowson, S. and Greig,
R. (2009), The Emergence of the Independent Support Broker Role, Journal of
Integrated Care, Vol 17, Issue 4, pp. 22-30). |
Disability Reform Agenda in Tasmania: A Person Living With Disability (PLWD) PerspectiveJane Wardlaw, University of Tasmania‘Our starting point is the principle that everybody in society
has a positive contribution to make and that they should have the right to
control their own lives’ (Stainton 2009 quoting
Department of Health, English Green Paper 2005). The Tasmanian state
government is implementing a disability services reform agenda; a systems
change, to respond to the current and future challenges of providing support
to people living with disability (PLWD).
It is an ideal time for systemic transformation in the way that PLWD
can have more ownership over decisions that impact on their daily living and
an opportunity for ideal inclusion because the system largely in Australia is
‘broken’ and ‘broke’ (NPWDACC 2009). An ideal system embraces
and acknowledges diversity and difference surrounding disability by highly
valuing self-determination, choice, flexibility and responsibility of the PLWD
(and/or their family/carers) and community living (Stainton,
2009). As Stainton
(2000) points out, the interest is with
capacity; how decisions are made, and providing the means to enact those
decisions to enable PLWD to reach their full potential. It is expected that in
contemporary society, processes in developing system changes and good policy
formulation effectively engages and consults with all key stakeholders to
determine all factors and devise instruments to consider impacts for example
‘the legitimacy of much public policy now rests on an exchange between
citizens and their government’ and, ‘[the government] must find ways to
discuss with relevant communities of interest and draw them into the policy
process while avoiding unreasonable delays...’ (Bridgman and Davis 2004 p.78).
Further, ‘experience shows that good process is integral to
consistently good policy’ (Bridgman and Davis 2004 p.32).
Importantly, it brings fresh new workable ideas to the table for contemporary
systems reform and innovative social care change that meets the needs of the
people and reduces stress on a system. PLWD, in particular
customers of Disability Services are fundamentally citizens and a ‘relevant
community of interest’ or key stakeholder. The issue with the state
government’s reform agenda is that PLWD have been excluded as key
stakeholders in the reform design process and implementation. The reform agenda has largely been
championed by other key stakeholders: service providers and government
(facilitated by professional consultants (KPMG)). PLWD are excluded from the negotiating and
systems reform design table. Unfortunately, it signals
to the broader community that PLWD are not worthy and not capable to
contribute to ideal system change. Not engaging PLWD as key
stakeholders in all facets of system reform misses the opportunity for PLWD
to assist in shaping workable partnerships within balanced, inclusive power
relationships, ‘seeking a viewpoint from those affected by a policy decision
is sometimes a legal requirement and often, just smart policy making’ (Bridgman and Davis 2004 p.78).
It also minimises the opportunity for PLWD to become self-determining
and responsible for their own lives because they are not at the discussion
table engaging with the other key stakeholders sharing information and
experiences. There is a lost
opportunity to have ownership of shaping an ideal social care system for
future generations. Without acknowledging PLWD
as ‘a relevant community of interest’ at the system reform table, strengthens
the ‘paradigm of professional control’ instead of ‘emphasising
self-determination and community involvement’ (Fisher et al. 2008); and blocks the ‘humanisation’
movement of PLWD (Ward and Meyer 1999). The very fact that PLWD
have been excluded from shaping a new system that affects their lives, places
the reform agenda at high risk of failing to meet the needs of PLWD in
contemporary society. PLWD (and their
families/carers) are demanding systems change where they are at the
centrepiece of decision-making about their own lives. This very action of
‘missed consultation’ perpetrates charity, benevolence, and professional
control of PLWD. Such imagery does not
highlight diversity, difference and worthiness of PLWD as citizens. The opportunity for true
transformation is now remote. Unless
PLWD are enrolled in a partnership strategy to draw them into decision
making, in the shaping of a new system reform, the possibility of true systemic
transformation is missed. At worst the Disability
Reform Agenda will unwittingly perpetrate exclusion of PLWD and the chance to
become self-determining and responsible for their futures in Tasmania is
lost. At the very heart of the reform
design, the power and control remains within the relationship between the
government and the service providers.
PLWD are excluded. The reform is at high risk
of regurgitating an already broken system into another form which is not the
intention of government, rather, a careless possibility. So questions remain. How can the voices of PLWD be heard? Why have PLWD been excluded from the
fundamental shaping of system reform? How can PLWD have self-determination and
choices that includes an independent life, when the very system that controls
them does not include them in the process of shaping appropriate reform? Bibliography Bridgman,
P and G Davis. 2004. The Australian Policy Handbook. 4 Edition.
Crows Nest, NSW: Allen & Unwin. Fisher,
K.R., S Parker, C Purcal, O Thaler,
P Abelson, E Pickering, S Robinson and M Griffiths.
2008. "Effectiveness of Supported Living in Relation to Shared
Accommodation." Sydney: University of New South Wales Consortium. NPWDACC.
2009. "Shut Out: The Experience
of People with Disabilities and their Families in Australia." ed. FaHCSIA. Canberra: Commonwealth of Australia. Stainton, T. 2000. "What is Self-Determination?" In The First
International Conference on Self-Determination and Individualised Funding.
Seattle. Stainton, T. 2009. "Case management in a rights-based
environment: structure, context and
roles." In Planning and Support for People with Intellectual
Disabilities. Ward,
M.J. and R.N Meyer. 1999. "Self-Determination for People with
Developmental Disabilities and Autism:
two self-advocates' perspectives." Focus on Autism and Other
Developmental Disabilities 14(3):133-139. Jane can be contacted on Jane.wardlaw@utas.edu.au or telephone: 03 6324 4052. |
National NewsNational Mental Health Consumer ConsultationJenny Speed, PWD. The Australian Government
is seeking to establish a new peak national mental health consumer
organization. In November 2008, the Department of Health and Ageing brought
together an Expert Reference Group drawn from a range of consumer organisations
to consider the next steps in establishing a new national consumer
organisation. As a result of the meeting, the Expert Reference Group
determined a need for a nationally owned, representative and independent
consumer organisation. Just as autonomy and self
determination are essential conditions for recovery and maintenance of
well-being for individuals, having genuine and meaningful input by service
users into all aspects of mental health care is a necessary condition for a
healthy and responsive mental health sector. Active involvement of consumers
at all levels of the development, implementation and evaluation of health
strategies and programs is integral to their success. In particular, it leads
to more accessible and effective health services. A service designed and
delivered with an understanding of the views and needs of those who are to
use it is more likely to effectively target these needs. It follows that
involvement of consumers in health service planning, delivery, monitoring and
evaluation is likely to result in services which are more accessible and
appropriate to service users. Details about this
initiative and how to participate, including dates and places of consultation
meetings, can be found at http://www.crazelateralsolutions.com.
All service users, whether current or past,
are encouraged to combine their voices to ensure that this new mechanism will
truly reflect the diversity of needs and opinions to be found among Australian
mental health consumers. National People with Disabilities and Carers Council launches its Shut Out reportThe National People with
Disabilities and Carers Council has released its report, entitled Shut Out: The Experience of People with
Disabilities and their Families in Australia. The report collates information from the
various consultations held nationwide about the National Disability Strategy,
together with the submissions made by numerous groups and organisations, of
which PWD was one. The report was
launched in Melbourne on 5 August, and was accepted by the Hon. Jenny Macklin
MP, Minister for Families, Housing, Community Services and Indigenous Affairs,
and the Hon Bill Shorten MP, Parliamentary Secretary for Disabilities and
Children’s Services, Parliamentary Secretary for Victorian Bushfire
Reconstruction. Both addressed a small
gathering, as did Mr Graeme Innes AM, Disability
Discrimination Commissioner and Race Discrimination Commissioner, Dr. Rhonda Galbally AO, Chair of the National People with
Disabilities and Carers Council, and Ms Kirsten Deane, the principal author
of the report. The report itself
effectively summarises the longstanding complaints and frustrations of people
with disability and their families, with the level of exclusion that has been
experienced, and highlights in particular the continued lack of access to the
same conditions as other people that has existed despite the passage of
disability services legislation and disability discrimination legislation in
Australia. It highlights the barriers that are experienced by people
with disability, and focuses future efforts on overcoming these barriers,
rather than on continuing to pursue impairment-oriented solutions. The report can be accessed
at the FaHCSIA website: http://www.fahcsia.gov.au/sa/disability/pubs/policy/community_consult/Documents/NDS_report.rtf NSW Justice and Attorney General’s Department reviews Charter of Victims RightsThe NSW Justice and
Attorney General’s Department is undertaking a review of the Charter of
Victims Rights. There is an extensive consultation process being undertaken
to gain a greater understanding of victim's knowledge about the Charter,
which rights are important to them, and what, if any, modifications are
needed. This review will provide a
strategic direction for the delivery of services for victims of crime and
will include a plan to develop a framework to enhance accountability to it.
Criminal Justice agencies, and the Department will be the first to trial this
accountability framework. The Consultation ends on
Friday 4 September. A copy of a
Consultation Paper in PDF format can be provided if you email Michael
Bleasdale at michaelb@pwd.org.au Group Homes to accommodate 10 people in bid to increase affordable housingThe NSW Premier Nathan
Rees announced at the beginning of August that his Government had delivered
on its promise of providing affordable housing, and that the capacity for
DADHC to self-approve 10-bed houses for people with disability was part of
that solution. Also included in the
announcement was the fact that boarding houses will be easier to approve in
residential areas and in some business zones, although it was not clear
whether this also refers to Licensed Residential Centres for people with
disability, which are currently licensed by DADHC. The full text of the
announcement can be read on: http://www.housing.nsw.gov.au/NR/rdonlyres/C944987C-F9E1-4C8E-A54B-186FDFFB3794/0/Promiseforcheaperhousingoptions.pdf |
The Inside StoryPWD’s Position Statement on Individualised Funding and Self-Directed SupportsThe
Board of PWD has endorsed the release of its position statement on
Individualised Funding and Self Directed Supports. The position statement articulates the
principles and guidelines that PWD believes need to underpin the
implementation of individualised funding and self directed supports in
Australia. The
position statement will soon be available on the PWD website. Interim Board ArrangementsThere is some good news on
the health of Robert Farley. He is now
making a good recovery from the illness that he began suffering from over two
months ago. We all continue to wish
Robert well, and look forward to seeing him back in his role at PWD in due course.
We still need your views on ‘Health and Wellness’PWD is developing its next
edition of Link Up, which will focus on Health and Wellness of People with
Disability. Robert Manga,
Interim President is the Editor for this edition, and he is looking for
interested individuals with disability to contribute their views. We currently don't know
how individuals with disability define health and wellness and which
practice, barriers and opportunities have the most critical impact on our
health status. Some of the following
questions may inspire you to write a personal account on what defines health
and wellness, and what are the barriers or facilitators to achieving or
maintaining health and wellness: 1.
How
do you know you are healthy and well? 2.
How
do you know that you are unwell? 3.
Can
you describe anything you can do to remain well and healthy? 4.
What
do you currently do to remain well and healthy? 5.
Can
you describe the things that prevent you from being healthy? 6.
Based
on your experience, what things influence being healthy and well? 7.
What
are the most important changes that need to happen in order for people with
disability to reach their optimal level of health and wellness? Your personal accounts and
case studies will be a valuable contribution to our Link Up publication. It is vital that we get these accounts to
make the publication accessible and relevant. If you would like more
information please contact Robert Manga, pwd@pwd.org.au Personal accounts and case studies
can be sent to pwd@pwd.org.au with the subject heading Health
and Wellness. |
Conferences and Events
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About PWDPeople with Disability Australia Incorporated (PWD) is a
national disability rights and advocacy organisation. Its primary membership
is people with disability and organisations primarily made up of people with
disability. PWD also has a large associate membership of other individuals
and organisations committed to the disability rights movement. PWD was
founded in 1981, the International Year of Disabled People, to provide people
with disability with a voice of our own. We have a cross-disability focus; we
represent the interest of people with all kinds of disability. PWD is a
non-profit, non-government organisation. For information about membership, contact Sidney Sure by email or on one of
numbers below. PWD’s training servicesPWD has extensive experience in the development and delivery of
professional training across a wide range of disability areas, including:
Training packages developed are flexible and tailor-made to meet
the needs of the particular organisation. To find out more about PWD's training services or to discuss your specific training
needs, contact Fiona Godfrey, Manager,
Training. |
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