Contents
Introduction
We have been busy for some time with improvements to our Website, including
development of additional interactive services for persons with extensive disabilities.
We hope to soon be able to present the results of our efforts.
For information about our other projects and activities please refer to our
latest Annual Report, www.independentliving.org/docs1/ilanrp2002.html.
Stay tuned.
Adolf Ratzka
Director,
Independent Living Institute
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Editorial: What are Direct Payments?
In order for people with extensive disabilities to reach the same control and
the same choices in every-day life that non- disabled persons take for granted,
a number of prerequisites are necessary. Among these prerequisites are personal
assistance and accessibility in the built environment, including accessible
housing. Without these two necessities persons with extensive disabilities can
choose only between being a burden on their families or living in an institution.
Personal Assistance
Assistance from paid workers enables the user to carry out such every-day activities
as bathing and dressing, and going to the toilet; and household chores such
as shopping, preparing meals and cleaning. Assistants help the user at work,
about town and when travelling. They assist in communicating or in structuring
the day, as the case might be. In brief, assistants help with those activities
which the user would have done by himself or herself, had it not been for a
physical, sensory, mental or intellectual disability.
People who are dependent on others for the most basic needs of life face prejudices.
Given their physical dependency the conclusion is close at hand to consider
them as dependent on others both emotionally and intellectually. Somebody who,
like a small child, cannot pull up his or her pants, may be treated as a small
child in other respects as well. The result is often over-protection and custodial
care where other people make the decisions.
"Personal" assistance means that the individual user exercises the
maximum control over how services are organised and custom-design their services
according to their individual needs, capabilities, life circumstances and aspirations.
In particular, personal assistance requires that the individual user decides:
* who works,
* with what tasks,
* at what times,
* where, and
* how.
Thus, the individual user must be able to recruit, train, schedule, supervise,
and, if necessary, fire his or her own assistants. Simply put, "personal
assistance," means that the user is the boss. It is recognised that users
with learning or mental disabilities will need support from third persons with
these functions.
Personal assistance enables users to take their rightful place in the family,
at work and society with all the rights and duties that the general population
takes for granted. With personal assistance, persons with extensive disabilities
need no longer be a burden on their families. Parents, husbands or wives do
not need to stay at home and sacrifice their careers. Personal assistance users
not only manage on their own, they can also do their share of household and
child-rearing. With personal assistance we can attend school, enter the labour
market and become tax-payers. When we fall in love, our partners need not fear
that they are about to sign up for a life-long 24 hour job.
Direct Payments
Today, most existing assistance services that are provided by public or private
agencies control and limit our lives, make us dependent and helpless.
We need to work and fight for solutions where we no longer have to adapt our
needs to the needs of the service provider but instead shape services to fit
our needs.
Turning "care" into "personal assistance" requires a fundamental
shift in the distribution of power between user and provider. One precondition
for this change is an altered self-perception of the user of the services. Instead
of seeing oneself as the passive object of other people's interventions, the
user needs to be the subject, in charge of his or her own life. The best help
in facilitating the change is peer support. The other precondition is having
access to the funds it takes to hire one's assistants. Both requirements go
hand in hand.
In order to have access to the necessary money we need to re-channel the resources
which are used in the disability field today. Instead of passively receiving
services, the individual user needs to control the money which these services
cost. With the same amount users can achieve a better quality of life. With
money in our hands, we can buy services from the provider of our choice. Or,
we can hire, train and fire our own assistants, which is the most direct control
over service quality.
Resistance to the simple idea of direct payments has been strong given the vested
interests of many service providers and the wide-spread prejudices against disabled
people, according to which they cannot act in their own best interest and need
to be "taken care of."
Services in kind control us, direct payments empower us.
Adolf Ratzka, Stockholm, 2003-10-14.
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New in the Library: Articles and studies on Direct Payments
Nolan, Ann and Regan, Colm. 2003-05. "Direct Payments Schemes for People
with Disabilities, A new and innovative policy approach to providing services
to disabled people in Ireland." Bray Partnership, Ireland, Website: www.braypartnership.ie/.
Internet publication URL: www.independentliving.org/docs6/bray200305.pdf.
See also "A Summary Guide," Internet publication URL: www.independentliving.org/docs6/bray200305-sum.pdf
The authors argue for the case for Direct Payments in Ireland.
MacFarlane, Ann. 2003-03. "Older People and Direct Payments." Includes:
Older People &Legislation on Assessment & Direct Payments, Summary of
the legal provisions, by Ann Macfarlane MBE, March 2003. Internet publication
URL: www.independentliving.org/docs6/macfarlane200303.html
Presented at the European Network on Independent Living (ENIL) conference in
Southampton, England, 7-9 March 2003.
Direct Payments can be a viable option for older persons as well, argues long-time
advocate and personal assistance user Ann MacFarlane.
Hasler, Frances. 2003-03. "A summary of the Department of Health (DoH)
Figures for Direct Payments Users in the UK in 2002." Internet publication
URL: www.independentliving.org/docs6/hasler200303.html
Presented at the European Network on Independent Living (ENIL) conference in
Southampton, England, 7-9 March 2003.
Evans, John. 2003-11. "Developments in Independent Living and Direct Payments
in UK." Internet publication URL: www.independentliving.org/docs6/evans200311.html
Presented at the European Network on Independent Living (ENIL) conference in
Southampton, England, 7-9 March 2003.
ENIL chair John Evans, member of the legendary Project 81 which was one of the
milestones on the way to Direct Payments in the UK, highlights recent developments
in his country.
Ratzka, Adolf. 2003-04. "The prerequisites for de- institutionalization."
Paper presented at the European Congress on Independent Living, Tenerife April
24-26, 2003. Internet publication URLs: www.independentliving.org/docs6/ratzka200304.html
The concept of Direct Payments is illustrated by the author's biography and
the Swedish personal assistance reform.
Ratzka, Adolf. 2002-10. "User control over services as a precondition for
self-determination." Plenary presentation at Danish EU Presidency Seminar
on "Quality of Life and Quality in Services for People with Disabilities,"
Copenhagen, October 31-November 1, 2002. Internet publication URL: www.independentliving.org/docs4/ar200210.html
The author argues that Direct Payments enable users to function as customers
and to benefit from the shift of power that the control over money entails.
Ratzka, Adolf. 2003-08. "From patient to customer: Direct payments for
assistive technology for disabled people's self- determination." Internet
publication URLs: www.independentliving.org/docs6/ratzka200308b.html
Direct Payments can be used also for other services, not only for personal assistance.
The author, AT user and activist in the Independent Living movement, claiming
that direct payments for AT result in better quality and cost-efficiency than
services in kind, suggests a pilot project to test the hypothesis. Plenary paper
presented at the 7th European Conference for the Advancement of Assistive Technology,
"Shaping the Future", Dublin, Ireland, August 31st - 3rd September
2003.
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Other Services
Accessible Vacation Home Exchange: www.independentliving.org/vacaswap.html
Swap your home during your next vacation with somebody in such destinations
as France, Egypt the UK or Canada. We have over 300 attractive offers waiting
for you! Our base of participants lists the accessible features of their homes
and dates they wish to travel.
Assistant Referral Service: www.indep/assex/index.htmlendentliving.org
Many persons with extensive disabilities use paid workers for such daily tasks
as getting bathed and dressed, shopping, driving their car, assistance at work
for those tasks they cannot do by themselves. Our referral service matches assistance
users and assistants in their hometown or in other parts of the world, for live-in
or part-time positions or as travel companions.
Global Networking: www.independentliving.org/donet/index.html
Global Networking now has 300 organizations from around the world offering information
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