Self-determination through Direct Payments and Personal Assistance cooperatives

 Adolf Ratzka, PhD, Director, Independent Living Institute, Sweden

Keynote at the launch of the Citizen Directed Co-operatives Cymru (CDCC) project supporting citizens in Wales to develop a Direct Payment co-operative owned and run by its members

Cardiff, Wales March 24, 2015

 What is Independent Living               

“Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own. Since we are the best experts on our needs, we need to show the solutions we want, need to take charge of our lives, think and speak for ourselves - just as everybody else. To this end we must support and learn from each other, organize ourselves and work for political changes that lead to the legal protection of our human and civil rights.”

 Very few disabled people have the same choices and control over their lives that non-disabled people take for granted, especially, if you have need assistance from others with the activities of daily living such as eating, dressing, personal hygiene, etc. What are the alternatives for this group today?

Mum and dad forever!

In most countries people with these needs get help from the family. That may work as long as we are children, keep a low profile and don’t demand a regular life. After our brothers and sisters have moved out to start families of their own, we are left with mum and dad. Soon we are 40 and still need mum and dad for going to the toilet. What happens when mum and dad are in their 80s and need lots of help themselves?

Institutions and the house arrest principle

In some countries, with luck, you can find a place in a residential institution where they feed you and help you to the toilet. But is that what life is all about? I lived in an institution between the age of 17 and 22. Everything was planned by the staff: when to get up and when to sleep, when to eat and when to go to the toilet. I had to accept help with the most intimate things even from those I did not get along with. I couldn’t leave the buildings and go out because I had nobody to accompany and assist me. I survived but had no life.

Supply-driven services are provided in-kind and allow no choices

Getting help from family and residential institutions are supply-driven solutions. That is, we have to take what we can get. Typically, supply-driven services have monopoly positions: there is no competition, we don’t have much of a choice. We are forced to adapt your needs to fit the needs of the service provider. For example, in the institution I lived for five years I had to go to bed at 8 pm because only at that time there was enough staff on duty to put all those to bed who needed help. A typical one-size-fits-all solution. To function smoothly it requires inmates who are malleable, harmless, inoffensive, who swallow their fury and don’t talk about “rights”.                                                                                                                

Demand-driven services require purchasing power

In demand-driven solutions you can pick and choose. If you don’t like Company A, go to Company B next door. You are customer, not captive audience. Service providers will try hard to outperform the competition in adapting their product to your needs. But you need cash to shop around. The difference between supply-driven and demand-driven services is similar to the difference between a Victorian Poor House or Work House and the modern pension system. In the Poor House you had a roof over your head and your daily bread. There was no à la carte menu!  Today, our pension system recognizes human diversity and does not attempt to meet needs with services in kind - what a paternalistic and bureaucratic nightmare! Instead of grey woolen socks, a couple of tuna fish tin cans and a bucket of coal a week we get convenient cash which we are free to spend on our felt needs given our individual tastes and preferences at the moment.

In supply-driven services we are treated as objects, as cases. In demand-driven services we act as sovereign subjects, customers and citizens.

Independent Living requires demand-driven services

If people with extensive disabilities are to have the same choices and control over their daily lives as other people take for granted, supply-driven services will never do. Life is more than survival. I need assistants who help me do all that I would have done by myself if I weren’t disabled: do my share of the family household, go to work, hang out with friends, travel, fix the house, do gardening. For all of this I need assistance from people who are good at what they are doing, people who like to work for me. I have to do the recruiting, I need to train and supervise them. I need to be the boss because I know best what I want to do with my life. People with cognitive or psychiatric disabilities might need assistance from family, friends or other people they trust for complementing their capacities in fulfilling their role as boss. 40% of the members of my personal assistance user cooperative in Stockholm need that support.

Since we - like all human beings - are unique individuals, our needs, personal resources, background, preferences and visions form a unique combination. If our assistance is to help us achieve the kind of life we aspire, we, as individuals, need maximum control in custom-designing our assistance solutions. I must decide, for example, who is to work for me, with what tasks, at what time, how I like things to be done and where - at home, at the office, around town, in Cardiff. That’s why we in the Independent Living movement call it “personal assistance”.

What is personal about Personal Assistance?

Is it because my assistants help me with my intimate personal hygiene? No. In a residential institution they also help you go to the toilet and wash your private parts. Professionals steeped in the medical model of disability believe that personal assistance is all about our bodies: hygiene, getting dressed, lifted into the wheelchair, etc. Same disability, same needs. From such a mindset arises the concept of residential institutions, the expectation of saving labor costs by lumping us together allowing a minimum of staff to process our needs in conveyor belt-like fashion in complete disregard of our uniqueness as human beings. The crucial difference between supply driven services and Personal Assistance lies in the political dimension of “personal,” which implies individualization in decision making and concentration of power in one person – the user, since the money would follow the user, not the provider. 

Moving between supply-driven and demand-driven services

After five years in a German institution I was lucky to get a scholarship to study at the University of California, Los Angeles. As part of the scholarship I had a budget for hiring fellow students who worked as my personal assistants. At the age of 22, I was in charge of my life again. But without role models it took me years of trial and error to learn to be the boss.

When I moved from Los Angeles to Stockholm years later, I found that people with my needs there had to use local government community-based services or had to live in semi-institutional cluster housing facilities - both supply-driven. In both solutions you could not decide who was to work for you. And you were under house arrest because the services were tied to the home. If you needed lots of assistance, you could therefore not leave home.

It became obvious to me that good local tax money ended up in lousy, supply-driven services. From my own experience in Los Angeles I knew that with control over the same funds each of us assistance users could have superior demand-driven services. But how to re-channel the existing money away from local government services into our pockets?

STIL, the cooperative money-laundering machine

After a conference on Independent Living in Stockholm in 1983 a group of assistance users, under my leadership, formed a not-for-profit membership organization and applied for government funds. In a pilot project we wanted to demonstrate the superiority of demand-driven solutions over supply-driven ones. After two years of political and media work our group consisting of 22 assistance users was able to start. We called ourselves the Stockholm Cooperative for Independent Living, STIL.  Only assistance users can become members, only assistance users can join the Board. In 1989, STIL asked to continue our activities as a subcontractor to the City delivering personal assistance services to our members. Each of us was to be assessed by the City in terms of the number of assistance hours needed per day. The number was to be multiplied with STIL’s price per hour which was to cover wages at the going market rate, full social security coverage, STIL’s administrative costs plus members’ expenses for travelling with accompanying assistants. Members have their own personal budgets for which they are individually accountable.

The City Council approved our permanent status as subcontractor with only one vote majority in our favor, despite great media coverage, personal testimonials by our members and a scientific evaluation that showed that personal assistance is a great and cost-effective equalizer of opportunities. Interestingly, our initiative was heavily opposed by the established disability organizations that did not want alternatives to public services, by the labor unions that feared user empowerment, by the political parties on the left that didn’t want Thatcher politics and privatization in Sweden. During the late 1980s Sweden was divided by a debate about privatization of publicly owned monopolies for such services as electricity, telephony. Our initiative was immediately seen as an attempt by the bourgeois parties at dismantling local government services. By emphasizing the cooperative nature of our project we gained some reluctant support from the left, since the labor movement in its early days had started self-help mutual support organizations, still in existence today, for housing, construction, food chains, funeral services. I am convinced that we would have never gotten off the ground as a share holding company. Only a cooperative was politically feasible as subcontractor at that time.  

The purpose of STIL, apart from helping its members to Personal Assistance budgets, was to maximize individual members’ control over their personal assistance at a minimum of administrative work. STIL lets its members concentrate on the tasks crucial for service quality: recruiting, training, and supervising assistants. STIL trains and supports members in these functions to help improve service quality. We offer peer support groups and courses on Independent Living, how Personal Assistance can help you improve the quality of your life, to become a better boss for your assistants, to assert yourself in labor conflicts. The staff of the cooperative does payroll and accounting, advises and represents individual members in labor disputes, promotes Independent Living philosophy, in particular Personal Assistance, in projects and the media.

Self-determination and equal membership for all stakeholders?

I am skeptical about Personal Assistance cooperatives where assistance users, their relatives and assistants can be members with equal rights. My background in residential institutions and living with local government community-based services has made me very sensitive to having my life controlled and restricted by structures that I cannot impact directly and by people who are not in the same boat as I am.  I am dependent on personal assistance almost 24/7. My assistants work part-time. Personal Assistance is the foundation on which I built my life, my family, my work, my lifestyle. For my assistants it’s just a job.  In my cooperative with roughly 200 members and 1200 assistants, assistance users would never be able to get their positions through, if assistants had equal voting rights.  Assistants as equal members may look politically correct but will not be conducive to self-determination of assistance users.

Personal assistance is cost-effective

Personal assistance has saved the taxpayers millions compared to the alternative of supply-driven local government community-based services. We never argued that our solution would be cheaper - that is a very dangerous argument. Instead, our sales pitch had been that we produce services of a much higher quality at the cost of conventional services. A few years ago, researchers at Stockholm University calculated that personal assistance compared to community-based municipal services had saved the taxpayer at least € 3 billion during the years 1994 and 2006  -  one hour of personal assistance has always cost far less than one hour of community-based municipal services.

Personal assistance is an efficient labor market policy instrument  

According to a large government survey 16% of the recipients of direct payments for personal assistance can engage in gainful employment due to their assistants. Add to this number our family members who now are free to return to their own careers and work, since we no longer depend on them. Add our assistants who depend on us for work. The 16,000 recipients of direct payments in Sweden together employ 50,000 assistants on a full-time basis - as many as the City of Stockholm, the country’s biggest employer. Thus, direct payments have become an important labor market policy instrument - and a cheap one at that: over 50% of what we get in payments goes straight back to the government as social security contribution and income tax. Our assistants are often low-income persons - young people between school and labor market, artists and other free-lancers and recent immigrants many of whom would be on welfare, if they wouldn’t work as assistants. They use their wages not for buying condominiums in Spain but mainly for rent and groceries which stimulates domestic Swedish demand.

In summary, Personal Assistance is a powerful equalizer of opportunities for people with extensive disabilities and user-run cooperatives are a good way to insure self-determination for a large number of users.