A 1985 speech given Richard Llewellyn to the Disability Advisory Council of Australia and Disabilities Council of NSW Consultation on the New South Wales Attendant Care Pilot Study, examining global support care models. Later published in Australian Disability Review 11985

The fact that this seminar is being held marks a kind of ‘coming of age’ of the idea of attendant care. It’s an idea that grew as an offshoot of the thrust towards independent living for people with disabilities right around the world in the 1970s.

How to support personal care activities in Australia?

What do we in Australia mean by ‘attendant care’? Options range from a kind of ’24-hour personal slave’ to a minimal, ‘get up and out’ service. We are however basically talking about the many problems faced by people with severe disabilities in doing the normal things most people do unconsciously – getting up, bathing, dressing, grooming, etc. These are called ‘personal care activities’. In the context of being able to live independently in the community, household care activities including cleaning, laundry and meals may also be vital. An attendant is an enabling employee to the person with disabilities, who may perform personal care and/or household care tasks.

Most of the questions about attendant care centre around “how” issues, not “why”.

Overseas model of care support

I would like to review some of the body of experience of how attendant care is organised overseas, in particular, some Swedish, California and Netherlands programs. The mix of service models are very different, both between and within each of these places, and they all seem in states of evolution. I feel we need to look at what can be learned in our stage of developing our own uniquely Australian version of attendant care.

Swedish model in the early 1980s

I’ll turn first to Sweden, which has a population of 8 million and a historical and social commitment to redistribution of national resources by its citizens. A tax-free disability allowance of approximately $160 a month is available to persons with severe functional physical impairment, in order to provide compensation for the additional costs of living for housing modifications and technical aids, is provided regardless of income through national programs. The main Swedish aim in assisting elderly and disabled persons in their homes is to reduce the demand for costly institutional care. Dr. Adolf Ratska, a consumer and researcher, has calculated that you would need 7 hours a day of home assistance to make its cost comparable with the most expensive institutional alternative.

Sweden has a national program of personal assistance for people who are elderly and disabled run by their counties. Attendant tasks consist of getting people up, getting them dressed, assisting with personal hygiene, cooking, shopping and running errands, house cleaning, etc. The need in terms of number of hours of assistance is assessed by a municipal social worker. In 1982, a total of 330,000 persons or 4% of the total Swedish population received an average of 3.3 hours per week per person, with 40 hours being a rarely used maximum amount. In some communities, personal attendants are not available after office hours and during weekends.

The program’s costs are shared between local government and the central state, which contributes 35% of all costs. Decisions on type and quality of service rest with the municipality and vary widely depending on finances and political views. A stagnant Swedish economy in the 1980’s has strained local government finances, with the result that consumer fees are being imposed with some paying flat fees and some being means-tested.

In several Swedish counties supplementary cash payments for the purpose of attendant care are made directly to the consumer who turns over the money to his or her family or a person living in the home. In 1982, 2000 persons received between $8.50 per hour. (At the time $6 was the lowest municipal wage per hour.)

It is interesting to note that although the Swedes have pioneered independent living programs, the consumers of home assistance are called “patients” and the assistants are commonly called “home Samaritans”. Maybe we could look in Australia to making more appropriate language than “client, consumer and attendant”!

California model of support care

Although almost all States in the U.S. have some form of attendant care, California is the most quoted example and leader in this field. Their 24-year-old program of attendant care is currently called ‘In-Home Supportive Services’ or IHSS. Attendant tasks include domestic, cleaning, meal preparation, laundry, personal hygiene, paramedical, yard cleaning, protective supervision, and limited transportation and educational services, which reduce the need for other supportive services.

As in the Swedish program, the need for assistance in California is assessed using a modified Barthel checklist by county social workers, not health professionals. Attendant care is treated as a social service, not as health or medically-related. By administering attendant care as an ongoing maintenance need, California has avoided the problems faced by other U.S. states when they tried to fit attendant care into funding areas which were overwhelmingly medical.

Of the California population of 23.7 million, (96,850) 0.42% are IHSS recipients. They are predominately elderly people with 14% of these 85 or older. Only 1% are 21 or younger, and another 8% are between the ages of 22 and 44. Surprisingly only 6% use wheelchairs, 57% are ambulatory and 33% are semi-ambulatory, needing assistance from another person or a device.

Extrapolating this data base to Australian figures, approximately 66,000 (.42%) of people could need some personal care assistance/home help and 4,200 (6.4%) of these would use wheelchairs.

How attendant care works in California

The maximum amount allowed for attendant care in California is currently $218 per week for individuals who require at least 20 hours of personal care services. Attendant care is provided through local counties, as in Sweden. They each have some autonomy in selecting among three methods: (1) paying individuals hired by the recipient (called Individual Provider mode), (2) contracting with an outside agency – whether a government unit, non-profit organisation or a profit-making firm – to provide the services (called contract mode), or (3) using their own employees (county mode). All but one of 58 counties use the Individual Provider mode for at least part of their work; 28 counties only use this method. (13 counties use county staff for part of their workload and the remaining 16 counties contract with an agency after a bidding process.)

It is cheaper to serve people who need a lot of attendant care through paying individuals hired by the recipient. 77% of IHSS recipients receive this direct payment mode (IP) accounting for 90% of the hours and 83% of expenditure, but people who need only a few hours of help are likely to find it more difficult to find individual providers and their tasks are more amenable to tight scheduling of normal working hours. Therefore, 21% of people are served by the contract mode, accounting for 9% of the hours and 15% of program funds. (The county method is used for only 1.4% of people, for .3% of hours and .8% of expenditure.) The average total cost in 1983/84 per participant was $60 per week.

The choice, selection and hiring of the attendant in the Individual Provider mode is the legal responsibility of the consumer. The majority of attendants are family members, friends or neighbours. Over the years in California, the regulations governing the circumstances under which the spouses and parents of minors can be paid as providers have loosened and tightened. Currently, a spouse or parent may receive payment for attendant care services if the provision of those services forces the person to leave or not enter full-time employment.

Attendant wages are set by the counties, which pay the minimum wage of only $3.35 an hour. The highest pay in 1983 was $3.71 an hour in San Francisco county. Attendants in this direct payment mode receive mandatory deductions for social security, workers’ compensation and unemployment insurance. However, IHSS does not cover holiday, sick leave and other benefits. Many recipients make special arrangements with their providers, like allowing unreported time off, to keep a good employee who may otherwise get a better paying job.

Netherlands model of support care

Quite a contrast to the California emphasis on individual service provision is seen in the way attendant care is approached in the Netherlands. It is difficult to obtain in the community but exists mainly within in the large institutional centres. I want to look at what is available as the disability movement begins to urge more independent community living alternatives.

The Netherlands is a country of 14 million people which had until recently a productive post-war economy and a growing welfare state financed by natural gas exports. Historically, Dutch society was formed by the opposing interests of Protestant and Catholics, with each group developing their own networks of social institutions, schools, unions, welfare agencies and political parties. Families and group organisations, not the government, have been expected to care for each other. This philosophy of mutual aid has bred the uniqueness of the Dutch system for people with disabilities.

History of the Netherlands Fokus accommodation concept

Attendant care in the community first emerged in the mid-70’s as part of the Netherlands Fokus concept of clustered housing. It provides a central Activity of Daily Living (ADL) unit, staffed by ADL assistants for 12 to 15 disability apartments scattered throughout new housing sub-divisions. Residents share the two persons working 24-hour, on-call through a communications system. ADL assistants (or attendants) are paid the minimum wage, with some adjustment for evening and weekend work. Attendants receive no special training, on the assumptions that their tasks are everyday tasks and that individuals can direct about their own care in bathing, grooming, dressing etc., The ADL assistant is primarily an employee of the Fokus foundation which hires, fires and supervises. However, the assistant works under the direction of both the foundation and the “resident”.

Disabled Fokus residents are responsible for paying their rent, utilities and telephone bills, but are subsidised by the General Work Disability Act (AAW) for attendant care. The cost of ADL assistance, which is paid to Fokus as the employing organisation on behalf of the resident, is $11 an hour. This figure includes wages, fringe benefits and other costs, including a portion of Fokus’ central office operation involved in supervising the ADL assistance program.

By financing of attendant assistance through Fokus to clustered housing, the government departed from mandating institutional or medically-based care. However, individuals living on their own, apart from a Fokus housing project, must still obtain assistance from friends and relatives, or a community-based home help agency, if possible.

Holland – lack of assistance for personal care

Holland’s home care agencies have, for many reasons been unable to target assistance to people with severe disabilities needing sustained, daily assistance. Professional and territorial disputes between home health and home care agencies have made disabled people political footballs.

The AAW Act mentioned above will not pay for personal care, but will pay for household care services through home care agencies to non-aged disabled persons 65. The worker is paid a maximum of $3.80 per hour, however actual costs to the government are about $12 per hour, when agency costs are added in. When a person recruits his or her own worker, actual costs are closer to $6 per hour. This service is non-means tested and universally available. Workers work from 8 a.m. to 6 p.m. and can be directed by the person with disabilities to do general house cleaning, shopping, meal preparation, laundry and other light chores.

Ongoing personal care assistance however is not allowed for household care workers. The home-health agencies, paying district nurses $20 an hour (1/3 from membership subscriptions and 2/3 from government subsidy) insist on doing all personal care work. These home health organisations have every incentive, politically and financially, to serve the few needs of many people and not the many needs of a few people. They therefore see ADL assistance as a drain on their resources and discourage taking on such tasks. From the consumer viewpoint, they are being used to foster the employment position of certain groups, but meanwhile lacking vital services themselves.

How a growing economy helps provide choices for disabled consumers

Finally, as an overall comment, it seems that whatever country present global uncertainties about future prosperity and economic ability to fund ‘welfare state’ programs will be a major factor in the kind of expectations that people with disabilities can hold. Given a healthy, expanding economy there seems a real willingness in the general population to extend benefits to more vulnerable groups in society. Naturally, economic uncertainty causes the generosity belt to be pulled in considerably. All three programs I have examined have experienced such readjstments.

Unfortunately, it does not necessarily follow that in times of toughening, people with the most needs, get first bite at the cherry. In my recent conversations with Dr. Ed Roberts, ex-director of the California Rehabilitation Department, he claimed that people with severe disabilities, who ten years ago had been up to 70% of clients, now accounted for around 25%. There seems to be a need for a clearer understanding by the community, politicians and administrations of the human implications of serving the easiest first.

New Zealand study into attendant care

The next few years will set crucial directions in our resolution of questions about disability policy. It is fascinating that a parallel Attendant Care Pilot Study has been going on independently in New Zealand. It is also a government-funded attempt to research and learn how best to structure care alternatives. Their Minister of Social Welfare, Mrs. Hercus, said in August that this was under review, as was the concept of the disability allowance. The Minister said, “New Zealand is looking at increasing the disability allowance and extending it so that it can be claimed for a wider range of costs. 5700 non-aged New Zealanders receive a maximum of $14.50 a week disability allowance.”

Damage to families in not having support

I believe that we need to still be clearer in our thinking about the attendant care issue, but perhaps to see it too in its wider social context. Attendant care is a pro-family issue. There are families where the damage is already done. They have been broken when one or more members have been prematurely put into institutional care. There are families where damage – physical, emotional, financial – is being inflicted and love is turning to despair. And there are families who have need of attendant care as a preventative measure, so that people can make choices as individuals and that the above situations do not prove the necessary consequence of living with severe disabilities.

In 1912 the newly formed Commonwealth accepted responsibility for its blind citizens. The Invalid Pension Act was amended in 1912 to place persons who were permanently blind in a different category from other recipients of Invalid Pensions. It made them eligible for the pension without regard to whether they were earning an income. The dual purpose was to discourage those already at work from leaving it with a view to obtaining a pension and to encourage others to undertake training for some occupation.

Hope that attendant care could be active in Australia by 1988

It is my hope that by the Bicentennial Year 1988, the Commonwealth will accept responsibility for its residents with severe disabilities and have in place in the community a truly national mix of alternatives for individuals and families. Perhaps it would be appropriate for the Bicentennial Authority and the organisations advising it to back a known practical program of key importance to disabled people – attendant care, rather than some doubtfully advantageous technological whizz-bang show.

Footnote: I am grateful to the work of Dr. Gerben DeJong, theorist of the Independent Living movement, for insights from his recent research as a Fulbright Scholar in the Netherlands. I also thank the consumer-oriented research of Dr. Adolf Ratska of Stockholm’s School of Architecture, Institute of Technology.

BIBLIOGRAPHY

AID (Advancing the Interests of Disabled) Magazine “Disability Allowances for 14,000 N.Z. Adults”, Julia Stuart, Auckland, N.Z. Nov 1985

“Independent Living and Disability Policy in the Netherlands. Three Models of Residential Care and Independent Living”, Gerben Be Jong, Ph.D., World Rehabilitation Fund Inc, New York, Spring 1984.

Kewley, T.H., Social Security in Australia 1900-1972 Sydney University Press, Sydney, 1973.

“Descriptive Analysis of the In-Home Supportive Services Program in California,”, J.Lean, H. Zukas, and K. Cone, World Institute on Disability, Berkeley, California, May, 1984.

“Swedish Personal Assistance Programs: An Analysis from a Consumer Perspective” (Incomplete Draft Version), Adolf D. Ratzka, Ph. D., World Institute on Disability, Berkeley, California, May, 1985.