Independent Living Institute

Direct Payments
- Independent Living Institute Newsletter 2003-10

Newsletter Index and Info



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,

Stay tuned.

Adolf Ratzka
Independent Living Institute


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.


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: Internet publication URL: See also "A Summary Guide," Internet publication URL:

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:
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:
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:
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:

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:

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:

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.


Other Services

Accessible Vacation Home Exchange:
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/
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:
Global Networking now has 300 organizations from around the world offering information to partner organizations for joint projects, events, sharing resource persons for lectures, training or technical assistance, for study visits, internships or other cooperation including funding. Add your organization now.

Our Online Library:
Check out our ever-growing full-text on-line library containing hundreds of articles on independent living, Universal Design, human rights, legislation, progressive programs and other examples of good practice, women with disabilities, assistive devices, national policies of various countries, and much more, so check back often!

Discussion Forums:
Regardless of what you have on your mind, you'll find an appropriate discussion forum that allows you direct contact with the thousands of visitors to our site each month.

Get Published:

Expose your articles, reports, training manuals or other resources to people with disabilities, researchers, service providers, government officials and policymakers all over the world.