Lifelong Disability Entitlement Scheme
Transformational Change in
Disability Funding
"our right to take responsibility"
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The
Lifelong Disability Entitlement Scheme
is a proposal for transformational
change in the funding of long-term care and
support for people with disabilities -
without the uncertainty, risk and loss of
control
associated with an insurance scheme.
It requires the Commonwealth
to legislate for a schedule of lifelong
minimum disability entitlements for all
people with diagnosed disabilities. The
schedule comprises seven payments - six
fixed-amount annual or one-off payments, and
one variable annual payment adjusted for
support need factors over the course of a
lifetime.
The Scheme would replace all
existing state and commonwealth disability
programs. It would direct all payments to a
nominated agent of people with disabilities,
rather than to service providers or to a monopoly insurance
company.
Disability is a part of
everyday life. It is not a 'liability' or
'risk' to be insured against.
People with
disabilities and their families have
struggled for decades to be socially
accepted as part of mainstream life.
To treat disability as
something to be insured against is at
odds with, and
runs counter to, its social acceptance.
Self-direction and
personalised control of supports by people
with disabilities and their families is a
basic human right. We do not think this
right to take personal responsibility is compatible with an insurance
scheme which treats decision-making about
eligibility to supports as a 'liability management'
prerogative of an insurance company.
Our view is that such decisions should not be made by an insurance
company.
We invite you to examine this
proposal for a Lifelong Disability
Entitlement Scheme and compare its benefits
with the proposal by three large service
providers (The Spastic Centre, Yooralla and
Disability Services Australia) for a
National
Disability Insurance Scheme (NDIS).
You will
see that the emphasis in the
Lifelong Disability
Entitlement Scheme is on social
relationships, participation and
self-direction - and
the provision of funding entitlements
designed to maximise these features over a
lifetime for each and every person with a
disability and their family.
We invite you to send your
response to this proposal to the Australian Government's
Inquiry into
a long-term care and support scheme for
people with disabilities. This Inquiry begins in April 2010 and
will report by July 2011. Its
Terms of Reference are available here.
At the conclusion of this
document, you will find a list of suggested
ways you may register your support for this
Scheme, and influence this critically
important national debate.
What follows:
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Outline of Entitlements/Benefits
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Case Study: Example of
Entitlements/Benefits
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Key
features of a Lifelong Disability
Entitlement Scheme
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Easy
comparison with NDIS
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Raise taxes? or Cut out the middle men?
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Your
feedback and comments
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"Our right to take
responsibility" Declaration of
Independence |
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At the
heart of this proposal is a requirement for the
commonwealth to
legislate for a schedule of lifelong minimum
disability entitlements.
This
schedule would be akin to the Medicare Benefits
Schedule, a published compendium which outlines the
medical entitlement every Australian can expect to
receive in ill health.
The schedule would
comprise seven payments:
Disability Support Entitlement
Supported Living Payment
Circle of Support Payment
Person-Controlled Information and Management Tool
Small / Micro-Business Development Grant
Respite Entitlement
Disability Capital Account
These payments would be
made to the nominated agent of each person with a
disability.
All of these payments
(with the exception of the Disability Capital
Account) may be pooled at the
discretion of the person with a disability and their
family.
1. Disability Support
Entitlement
Every child or adult who is diagnosed with a
disability would be eligible for a Disability
Support Entitlement (DSE) from the time of
diagnosis until death or until the disability
has ceased to disable.
The DSE would be an annual payment
intended to cover the cost of support
entitlements in home care, therapy, aids,
equipment, home modification and access
arrangements, and access costs to specialist
services , applicable to
all diagnosed
disabilities, with adjustments by factors of
age, sex, multiple disability and health status, locational disadvantage, and life-cycle-stage
over the course of a lifetime.
The amount of the annual entitlement would
be based on historically-determined average
costs incurred by people in similar
circumstances over the course of a lifetime. It
would range between $6,000 and $100,000.
People with a disabilities would receive an
annual DSE payment made to their nominated agent
(see the Key features section below).
2. Supported Living
Payment
Every person with a disability from the age
of 18 would receive an annual Supported Living
Payment of $6,000.
This payment would be for the
purpose of acquiring support in living
arrangements, whether the person is living on
their own or sharing a house or living with
their family. Best practice in various international
supported living models provides for a pooling of
similar payments in small local groups of about 10,
so that a group of 10 people with disabilities
may jointly
fund a full-time support worker.
People with disabilities
over the age of 18 would receive an annual
payment of $6,000 made to their nominated agent.
3. Circle of Support
Payment
Every child or adult who is diagnosed with a
disability would receive an annual Circle of
Support Payment of $2,000 from the time of
diagnosis.
This payment is a contribution towards the costs
of facilitating social networks of informal
support comprising family members, friends,
neighbours, shopkeepers, club members, and supporters.
People with disabilities
would receive an annual payment of $2,000 made
to their nominated agent.
4.
Person-Controlled Information and Management
Tool
Every person with a disability and their
family would receive a legislated entitlement to
a person-controlled information and management
tool.
All providers and practitioners supplying
services to people with disabilities would be required by legislation to
enter information on the service supplied into
the person-controlled information system. This
electronic record would also function as a
technology platform for the management of an
individual budget and support plan. It would
serve as a consolidated person-centred
information system which would comprise all
components of an individual’s support and care
history.
Every child and adult with
a disability would be entitled to receive an
initial payment of $2,000 for acquisition of a
person-controlled information and management
tool and training it its use. Thereafter, an
annual payment of $500 would be received for
maintenance and training, paid to the their
nominated agent.
5. Small / Micro-Business Development Grant
Every person with a disability over the age
of 18 years would be entitled to a Small / Micro-Business Development Grant to assist
in setting themselves up in
small or micro-business activity.
Many people with disabilities can and should
be employed in the paid workforce, but the
main obstacle to this outcome is a shortage in
suitable positions. This is primarily a failing of the
business community in not responding
entrepreneurially to the untapped resource of
people with disabilities - rather than a
failing of people with disabilities themselves.
An increase in employment for people
with disabilities will not be achieved quickly.
The Small / Micro-Business Development Grant would be for $5,000 per year for a
maximum of 5 years, payable to the nominated
agent of the person with a disability.
[Note:
The NDIS proposal contains a strong emphasis
on removing people from the Disability
Support Pension, and assigns 'incentives' to
its monopoly insurer to get them off
benefits as quickly as possible. This
emphasis would seem to be a response to government
budgetary pressures, rather than a response
to the needs of people with disabilities or
their families.]
6. Respite
Entitlement
Every family caring for a family member with
a disability would be entitled to a Respite
Entitlement, assigned directly
to family carers or the nominated agent of their
family member, in the form of a respite service
voucher, adjusted with a nature-of-disability
and difficulty-in-caring rating.
The Respite
Entitlement may be used to purchase in-home
respite or centre-based respite according to the
preference of the family or carer. The
Respite Entitlement would be for an amount
equivalent to the purchase cost of six weeks of
external support to allow the family or carer
six weeks of respite annually.
[Note:
Family carers of people with disabilities
want to be supported in their caring role, so
that they may combine a normal work and family
life with caring for their loved ones. Family carers generally
do not want to be stripped of their caring role,
and replaced by uninterested low-paid care
workers.
The NDIS
proposal contains an underlying assumption that
family carers should offload their family
members with disabilities onto a care provider so
they can resume a 'normal life' in the paid
workforce. This seems to be both an ideological
and
budgetary-driven push, rather than a response
to the best interests of people with
disabilities.]
7. Disability Capital
Account
Every child or adult who is
diagnosed with a disability would receive a
one-off investment of $10,000 in a high yield
Disability Capital Account. Withdrawals from
this account may only be made for purposes of
aids and equipment purchases, housing acquisition, business development, or
tertiary or vocational education.
The account may be held and
managed by the nominated agent of the person
with a disability, or their superannuation fund or
financial agent.
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Case Study: Example of
Entitlement/Benefits
 Carlo Costa is a 25 year old man with autism,
unemployed, and living with this parents in a
Newcastle suburb. He is considering moving out of
home, and looking for options.
Under current arrangements, Carlo
has periodic access to a Disability Employment
Network provider, which involves spending a
specified number of hours per month examining
online vacancies at the premises of the provider. His
parents would like to take steps to develop a
support network for Carlo but they don't know where to
start and have no money for it. They would like
Carlo to think about living out of home at some time
in the future, but have no
idea where the support for him would come from, and
are not eligible for any funded support until Carlo
has set himself up in a house.
Under the
Lifelong Disability
Entitlement Scheme, Carlo would receive
the following payments, which would be allocated to
his nominated agent, Newcastle West Community Health
Centre. Carlo has had contact with several disability
agencies over the previous 18 years, but none of
these is located close to Carlo's home. The Community Health
Centre is 5 minutes walk from Carlo's home, and
after an approach by Carlo's parents, the Centre
agrees to act as Carlo's managing agent, and a man
named Lawrie is Carlo's contact.
Disability Support
Entitlement
Carlo's agent Lawrie would receive
an annual DSE payment of, say, $12,000 for several
sessions per week of one-to-one personal support,
transport and accompanied support to attend a
regular rock
music gig, and weekly lessons from a singing teacher.
Carlo's parents organise these sessions and Lawrie
makes the payments.
Supported Living Payment
Carlo's parents have managed to
get in touch with several other
families in neighbouring suburbs whose family
members also each receive
$6,000 in Supported Living Payment. Together
they pool their payments to employ Rocco on a salary of $50,000 as a
full time support worker for their 10 family members.
Circle of Support
Payment
Lawrie receives an annual payment
of $2,000 for Carlo and with this money Carlo and his family take some
steps towards organising a social support network
around Carlo.
Person-Controlled
Information and Management Tool
To keep track of Carlo's support
needs and monitor where his money is going, Carlo,
Lawrie, Rocco and his parents acquire a technology
platform which they install on each of their
computers, and together use it to draw up, manage
and plan ahead for Carlo.
Everyone is able to access Carlo's
weekly support schedule, make changes to rostered support as
required, keep track of money coming in and out of
Carlo's support account, and allow funders access to
this financial and management information system as
and when they require it.
Lawrie receives a one-off payment
of $2,000 to set this up, using a low-cost
easy-to-use, not-for-profit system designed by
family carer in
Melbourne for national use. Thereafter, Lawrie
receives an annual
payment of $500 for maintenance and training.
Small / Micro-Business
Development Grant
Carlo and two other people with
disabilities from their group of 10 discover they
enjoy working together, and with some supporters and
family members, think they can set up a small
laundry business. With an annual payment of $5,000
each, the three of them buy some equipment, take out
some advertising, print some promotional material, hire a university student to do
their finances, and meet some operational odds and
ends.
Respite Entitlement
Carlo's parents receive an annual
Respite Entitlement which enables them to pay for
six weeks' worth of in-house support for Carlo each
year.
Disability Capital
Account
Carlo receives a one-off $10,000
investment in a high-yield Disability Capital
Account. Carlo and his parents decide to
grow this investment by making regular contributions
themselves and inviting service clubs and friends in
the area to
contribute so that Carlo may be able to purchase a
unit of his own in a few year's time.
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Key
features
1.
Eligibility
Eligibility for
scarce resources in disability support cannot be
determined in a discretionary way by
bureaucrats, insurers or service providers, but
must be determined independently through a
legislated schedule of entitlements.
Claims by
bureaucrats, insurers or providers that
eligibility can be determined by 'need' without
the backup of a legislated schedule of
entitlements, have no credibility. Entitlements
must be made binding upon governments, agents
and service providers.
The commonwealth
would legislate for a schedule of
lifelong minimum
Disability Support Entitlements
(DSE)
applicable to various forms of diagnosed
disabilities, with a capacity for adjustments by factors of age, sex, multiple
disability and health status, locational
disadvantage and life-cycle-stage over the
course of a lifetime.
The commonwealth
would ensure that eligibility for the DSE
includes disabilities which are currently not
acknowledged or inadequately acknowledged
including autism, ADD/ADHD, language disorders,
learning deficits, and various neurological
conditions.
2. Strict
separation between service provision and
fund holding
A person
eligible for a Disability Support
Entitlement, or their family, would nominate
a managing agent to hold and the manage the
DSE on their behalf. The managing agent may
be a community organization, a health fund,
a consumer co-operative, a for-profit
financial agent, a GP or lawyer, a parent,
friend or family or any other entity which
has a capacity to manage the financial
entitlement, enter contractual arrangements
on behalf of the person with a disability,
and manage their support and care
relationships to the satisfaction of the
person they act for. People with a
disabilities would receive an annual DSE
payment made to their nominated managing
agent.
There would be a
legislated requirement that no provider of
disability services or practitioner may
simultaneously act a managing agent of a DSE,
on conflict of interest grounds.The
systemic conflict of interest in present
disability funding arrangements whereby
providers of services may simultaneously act
as fund holders, gatekeepers to services,
and sources of information about the service
system, is a key cause of the current system
dysfunction.
3.
Choice of agent
A person with a
disability or their family must be free to
select their managing agent, and free to
transfer from one to another annually.
A
monopoly managing agent or insurer along the
lines of the state accident compensation
entities such as the TAC in Victoria is an
unsatisfactory arrangement for people with
disabilities. The state accident
compensation bodies are monopolies, and
their 'clients' have no recourse in the
event of an unsatisfactory ruling save legal
action. For this reason, entities like the TAC are constantly embroiled in legal
battles with disgruntled clients.
4. Person-controlled information and
management tool
All providers and practitioners
supplying services to people with
disabilities purchased with a DSE would
be required by legislation to enter
information on the service supplied into
a person-controlled electronic
information system. This
person-controlled electronic record
would also function as a technology
platform for the management of an
individual budget and support plan. It
would serve as a consolidated
person-centred information system which
would comprise all components of an
individual’s support and care history.
A nominated managing agent of a
person with a disability would also be
required by legislation to use this
person-controlled information system. It
would, in turn, enable online
transparency and accountability to
funders.
A person-controlled information and
management tool would be a legislated
entitlement for each person with a
disability and their family.
[Note: The NDIS proposal contains no
requirement for a person-controlled
consolidated information system. It may
be assumed that the monopoly insurer
will contain sole ownership and control
over a person's support and care
history.]
5. Requirement for a per person unit cost
All providers and
practitioners supplying services to people
with disabilities purchased with a DSE would
be required by legislation to offer a ‘per
person unit cost’ for all programs and
services, so that people with disabilities
or their agents may purchase with full
knowledge of the cost.
[Note: The NDIS
proposal is silent on how payments from
an insurer would be made to providers,
but the origins of the proposal in three
large service providers (The Spastic
Centre, Yooralla and Disability Services
Australia) may be taken to mean that
providers such as these would receive
payment in their preferred method,
namely, block funds from an insurer per
'client'.
The NDIS proposal
contains no requirement for an open
disclosure of costs. It can safely be assumed
that the monopoly insurer will restrict
knowledge of costs to a closed
information loop comprising the insurer
and service providers.]
6.
Disability Support Information Service
Commonwealth
legislation would also establish an
independent
Disability Support
Information Service to
provide comparative price and service
quality data on service providers and
practitioners, respite services, and
supported accommodation services. This
entity would be a statutory authority
independent of providers, with authority
to require information from providers
and practitioners in receipt of DSE
money for public disclosure.
[Note: The NDIS
proposal contains no information about
how a functioning retail market in
supports and services would be developed and
regulated.]
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Easy comparison with NDIS
This easy to use table
compares the main features of both schemes:
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Lifelong Disability
Entitlement Scheme |
National Disability
Insurance Scheme |
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Eligibility |
Legislated schedule of minimum entitlements |
Assessed by an insurance company on the
basis of 'need' |
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Choice of agent |
People
may choose their agent and freely transfer
on an annual basis
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A single
monopoly
insurer |
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Cost structure |
Full and open disclosure of unit costs for
supports and services |
Unit
costs subject to contractual arrangements
and closed information loop between insurer
and providers |
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Conflict of interest |
Legislated prohibition on service providers
acting as fund holders |
Silent on the provider/fund holder conflict
of interest |
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Person-controlled information and management
tool
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Legislated entitlement to a
person-controlled electronic record and
self-direction management tool |
Decision-making falls under the prerogative
of 'liability management' on the part of an
insurance company |
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Retail market |
An independent Disability
Support Information Service to supply online
comparative price and quality data |
Silent on how a retail market
would be developed and regulated |
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Family carers |
Has a stated goal of supporting
families in their care role |
Has a stated goal or reducing
dependence of people with disabilities on
their families and increasing dependence on
formal providers of care |
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Work and benefits |
Builds self-direction and
self-generated incentives to move into
business or employment activity |
Assigns incentives to an
insurance company to move people off the
Disability Support Pension |
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Social relationships |
Assigns payments to
facilitate social networks and social
relationships as the key to a good life |
Silent on social
relationships, views people with
disabilities as detached isolated beings to
be managed by others |
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Raise taxes? or Cut out the
middle men?
The NDIS proposal would increase the tax levy on
personal income by 0.8% to raise $4billion to meet
'unmet need' for disability services.
It
is impossible to gauge how much additional money is
needed because the existing service system is
plagued with duplication, inefficiency and waste.
There has never been a national audit of the
duplication and waste in disability across the
$20 billion spent in portfolios of health, welfare, education, housing,
transport and employment services in the public sector
across three tiers of government.
This $20 billion figure excludes the replacement
and supplementary spending on these services in the
private sector made to avoid waiting lists and
unresponsive providers.
All available research
and anecdotal evidence suggests that the duplication
and waste in current disability funding arrangements
is massive.
This is because the current funding model is
provider-centred and silo-driven
- which means that all tiers of government make
funding allocations by program type (home care,
therapy, social support, transport, etc) rather than
to actual people for the things they actually need.
This means, for instance, that an
allocation from the Commonwealth for one hour of
home care will begin life in Canberra as a bucket of
money tagged for home care across the nation. It
will then be broken down by state and territory, and
passed to
state and territory governments, who in turn will
invite and receive applications from service
providers to re-issue this money to eligible
recipients in their patch. After an assessment of
each provider's risk and financial management
provisions and personnel capacity, contracted
providers will then institute their own assessment
procedures and waiting list management protocols.
The result is that it costs the
Commonwealth $55 to provide one hour of home care
funding which eventuates as an end-of -the-line
payment of $18 per hour for a home carer for a
person with a disability.
In other words, when all the middle
men have taken their cut, $55 in taxpayers money for
disability support becomes $18 in the pocket of a
home carer for one hour's support for a person with
a disability.
If a national audit of the disability service system were
undertaken, it would be possible to know what
savings might be made from an overhaul of the
existing system, and how much additional spending,
if any, is required to meet unmet need.
But in the
absence of such an audit, the proponents of NDIS expect politicians to go to the voters and taxpayers
to ask them to cough up for a tax
increase of 0.8% of personal income to raise
an extra $4 billion for investment in a system
without knowing how much taxpayers' money disappears through
inefficiency, duplication and waste.
In no
other field of government investment would such a
proposal get past first base.
In
other fields, an Inquiry into the performance of
existing organisations and models, and the scale and
scope of system inefficiency, would usually take
place first. But in the Commonwealth's current Inquiry
into a long-term care and support scheme, these
areas of examination are excluded from the
Terms of Reference.
We think a much
simpler and more direct method of transformational
change in disability funding would be to invite
governments to eliminate significant duplication,
inefficiency and waste by cutting out
the middle men and putting in a place a person-centred
disability entitlement scheme.
We do not believe a tax increase in
an election climate is a prudent way to attempt to
secure transformational change in disability
funding.
On the contrary, it would appear to be an act of
folly, driven by three large service providers (The
Spastic Centre, Yooralla, and Disability Services
Australia) for additional taxpayer funds. The
institution of a new national funding scheme would
allow these large providers to fulfill their goal of
becoming national - rather than state-based -
players, inevitably gobbling up smaller agencies around
the country as has
happened relentlessly in banking, insurance and
retailing - and increasingly in welfare and
community services. |
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Your feedback and comments
We
would like to receive your feedback and comments
on this scheme.
You can use
this online form to send in your thoughts.
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"Our right to take
responsibility" Declaration of Independence
There are many ways you can register your support
for the Lifelong Disability
Entitlement Scheme.
Invite a speaker on the Scheme to your group or
organisation. We will be delighted to come -
anywhere in Australia - and explore these important
issues with you.
And
make sure you register
your interest in the Commonwealth Inquiry into a
long-term care and support scheme so you can attend
a hearing, receive updates on
its progress, and submit your support for a Lifelong
Disability Entitlement Scheme. You can register your
interest by going to
this web page.
But
most importantly, we invite you to sign up to the
"Our right to take
responsibility" Declaration of
Independence.
This is a declaration that your right to take responsibility for disability
supports will not be given away to an insurance
company.
The
text of the Declaration is:
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Declaration of Independence
Self-direction and personalised
control of supports in disability is a basic
human right for myself
or my family member. This human right is not compatible with an insurance
scheme which treats decision-making about
supports as a 'liability management'
prerogative of an insurance company.
I declare that
decision-making about disability supports is
the prerogative of people with disabilities
and their families. I will not give away
this right to an insurance
company.
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Use
this online form
of offer your support.
About us
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The Lifelong Disability
Entitlement Scheme (DES) is issued on behalf of Social
Enterprise Partnerships Ltd.
Social Enterprise Partnership is a national movement of people aiming
to change the system of funding disability,
ageing
support, education and health care in
Australia.
Visit
our
website.
Enquiries:
Vern Hughes
03 9824 4713
0425 722 890
vern@partnerships.org.au |
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Social
Enterprise
Partnerships |
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