Self-determination for Persons with Extensive Disabilities through Direct Payments for Personal Assistance

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

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.” ⁱ

What is the philosophy of the Independent Living Movement and what are its aims?

Anti-discrimination

The Movement works against the discrimination of people with disabilities and for more personal and political power. Everywhere people with disabilities as a group are disadvantaged in education, work, income, housing, transportation, in family life, in the social, political and economic lives of our communities. Some of us do not even get a chance to live, because they are killed before they are born. The more assistance from others we need, the worse is the paternalism, over-protection and discrimination we are exposed to. One of our goals is to have legislation and legal casework in place in all countries, that make it illegal to discriminate against anybody on the ground of disability.

De-medicalization

One of the reasons why we are discriminated against is that we deviate from what people think is "normal". Society has a tendency to label people who are different as "sick". Sick people do not have to work, are exempted from the normal duties of life, are marginalized. As long as we are considered sick by the general public, there will be little understanding, for example, why we want to live in the ordinary housing stock and not in residential institutions. One of our goals is to make clear to our communities and to ourselves the difference between being sick and being healthy, normal citizens with disabilities who have the same rights to a good life as everybody else.

De-institutionalization

Since we are often considered sick, many of us get shut away in hospitals and hospital-like institutions. There, it is claimed, we can be better "cared for". With this argument we are often put into special kindergartens, special schools, special workshops, special housing and special transportation. One of the goals of the Independent Living Movement is to shut down special, dehumanizing Apartheid solutions and force our way into the mainstream of society.

De-professionalization

We are often seen as sick people in need to be "cured" or at least "rehabilitated". Many believe that we need special, tender loving care by people in white coats. The more disabled we are, the sicker we are in the eyes of our surroundings and the more professional training the people are assumed to need who are charged with the task of ”taking care of” us. In this way, society has handed over the control over our lives to the professionals. Many of us have been raised in the belief that a medical doctor or a social worker is best qualified to make decisions regarding our lives. The more power we attribute to the person in the white coat, the less we believe in our own strength.

Self-representation

A the best expert on our needs, preferences and aspirations we need to speak up for ourselves on how we want to run our lives, what we need from society and community to be able to meet our obligations as family members and citizens.

The same self-representation we also need in our movement. Do we have organizations for disabled people or of disabled people? Are non-disabled professionals in control who look upon disabled people as clients? Or are people in charge who themselves know what it is like to be part of an oppressed minority, people who are fighting for their own rights? This does not only apply to the board of our organizations, we also need the staff positions where the day-to-day decisions are made. At the present unemployment among our people we need the work and training opportunities that our organizations provide. Society looks upon us as helpless people who cannot speak for themselves. If we allow non-disabled people in our own organizations to speak on behalf of us, we are confirming these prejudices.

Non-disabled people can be allies in our fight for equal rights. But if our friends really understand our cause, they will step down from important positions within our organizations, will not be in the forefront of our movement but support us from behind.

Nothing without us!

As the best experts on our needs we need people with disabilities as staff in our organizations, in city administration, in government and politics. Services, such as public transportation or assistance are typically designed, controlled and run by non-disabled professionals. These people, however well-intentioned, cannot have the insight in our needs, life-styles and aspirations which we have. As a result, we see paratransit systems running Monday through Friday, as if we had no need to go out on weekends. We see assistance schemes that provide services only within the political boundaries of our communities, as if we never had the need to cross city borders. If we leave the design of such services to other people, we should not be surprised, if their solutions fit the needs of their existing bureaucracies instead of our needs. 

We can go on feeling as powerless victims, as victims of other people's insensitivity, lack of understanding, conspiracy or whatever. Or we can choose to take charge of our lives. If we don't want to play the victim’s role, we have to take the initiative in the political and practical work of designing our key services ourselves.

Anybody can become disabled at any time. Therefore our group comes from all walks of life, from any category; we can be children, parents, neighbors, consumers, employers, employees, citizens, voters, politicians, artists, scientists, criminals, victims of war and catastrophies. We are part of any group, everywhere, at any time and are affected by everything just as people without disabilities. Any public policy, program or plan on any subject has to take into account our group’s needs as an integral part of the whole population’s needs, has to include representatives of our group as decision makers to insure we are not forgotten but included. Nothing without us!

Peer support

Independent Living is basic applied psychology. The most important change we have to make is the change within ourselves. We do not need to wait for other people to change their attitudes against us. When we look at ourselves differently, other people too will see us in a different light. When we respect ourselves as citizens with equal rights, it will be easier for us to convince others that we indeed have equal rights. 

To change one's perception of oneself is difficult. Sometimes we need to talk with people we can identify with, who are or have been in similar situations. The example of such a person is a much more powerful intervention than the best advice from a non-disabled expert. The Independent Living Movement utilizes this principle calling it ”peer support”. Peer support means to share the fruits of one's experience. It is our foremost educational tool to empower ourselves by sharing practical information, personal experiences and insights and by raising our consciousness about our role in society and what it takes to liberate ourselves.

Networking

In providing role models for each other and in sharing experiences disabled people need each other. As members of an under-privileged minority in society we have to support each other, band together and make this a better world. Only united we can gain political power.

Personal assistance as key to self-determination

Like everybody else people with disabilities are all different. What we do have in common, what we share with other human beings is the need to be recognized for who we are, to belong, be respected and loved, the need to realize our innate potential. For this we need to live and be included in the community, with the same degree of self-determination in every-day life and life projects that our non-disabled brothers and sisters, friends and neighbors take for granted.

Very few disabled people have the same choices and control over their lives as non-disabled people, especially those who 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?

Mom 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 mom and dad. Soon we are 40 and still need mom and dad for going to the toilet. What happens when mom 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? In my youth I lived in an institution where everything was planned by the staff: when to get up, sleep, eat and go to the toilet. I had to accept help with the most intimate things even from those I did not get along with. I survived but had no life.

Administrators, politicians and the public often assume that persons with disabilities can better be ”cared for”, if lumped together in one complex where shared staff attends to their needs. But the main interest in residential institutions is the promise of lower costs to the taxpayer through fewer staff per inmate. A comprehensive European study on de-institutionalization, its costs and outcomes concludes: “There is no evidence that community-based models of care are inherently more costly than institutions, once the comparison is made on the basis of comparable needs of residents and comparable quality of care.”ⁱⁱ

Smaller institutions do not necessarily offer better quality or lower costs compared to large institutions; they are still institutions where residents must share care workers, where personalized services and self-determination are impossible. A Swedish study compared the costs of group homes, i.e. small institutions with four persons each with their own room, kitchen and bath, with the costs of personal assistance. For persons with multiple disabilities including cognitive disabilities group homes cost about the same as enabling this group to live in ordinary housing with personal assistance.ⁱⁱⁱ

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

Getting help from family and residential institutions are supply-driven solutions: 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 our needs to 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. To function smoothly institutions require inmates who are inoffensive, 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 19^th century Poor 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 allows for individualization and does not attempt to meet needs with services in kind. Instead, 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

For citizens with extensive disabilities one of the means to achieve self-determination is personal assistance, a demand-driven service. If we are to have the same choices and control over our daily lives that other people take for granted, supply-driven services will never do. Life is more than survival. 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 individual assistance solutions.

I need assistants who help me do all that I would have done by myself if I weren’t disabled: get bathed and dressed, do my share of the family household, drive my car, 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. That’s why we in the Independent Living movement coined the term “personal assistance”.

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.

Definition of personal assistance

What is personal assistance? In my definition personal assistance requires the following conditions

• users employ their workers or contract competing providers of personal assistance services. Competition and freedom of choice are key.

• users have control over who works, when, where, how and with which tasks

• the individual user is the boss – subject not object- free to custom-design his or her own personal assistance solution

• users – not service providers - receive direct payments from the state that are sufficient to cover the necessary number of assistance hours at competitive wages including administrative costs

• amounts of direct payments for personal assistance solely depend on one’s needs and are independent of the individual’s or family’s income and wealth, choice of housing solution, other household members, independent of one’s diagnosis, geographical location or age.

Without these conditions we have very little influence over our lives. With these conditions we can live independently and be included in the community equal to others.

What is “personal” about Personal Assistance?

Do we call it personal assistance because assistants help us, among other things, with intimate personal hygiene? 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 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 denial 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 follows the user, not the provider. .

Quality criteria in personal assistance

The overarching aim of personal assistance is to enable individuals to live in as much as possible the way they would live without their disability, according to their respective individual and unique personal resources, backgrounds, interests and preferences. The degree to which one’s personal assistance enables the user to achieve this aim must be the main criteria for service quality. Service users themselves are best fit to measure service quality, since nobody else is equally familiar with their expectations and aspirations in life. With personal assistance dissatisfied service users themselves can improve quality by improving their supervisory and hiring skills or - if they purchase services from a provider – switch to another company.

It is helpful to break down service quality into several dimensions where the foremost criteria must be self-determination. To what degree does one service, compared to other services, promote the user’s ability to choose his or her place of residence in terms of location, form of housing (room, apartment, single family home in the city, suburb or countryside), by oneself or together with individuals of one’s own choice, with the same degree of freedom as the rest of the population? Solutions where assistance with the activities of daily living is tied to a specific geographical location, or services where the user has to accept assistance from persons who are not his or her choosing or service solutions that limit assistance to certain predetermined times perform poorly on the scale of self-determination. The same is true for services that do not support users in their work, in pursuing their education, interests, social activities, family responsibilities like the physical aspects of caring for one’s small children or aging parents – in one’s home or somewhere else.

Often, in discussing service quality the emphasis by politicians and professionals is on the basics: we are to be kept clean, fed and warm – as if only the lowest level in Maslow’s needs pyramid^iv applied to our group. Neglecting the dimension of self-determination in service quality reflects the attitude on the part of professionals, administrators and politicians that people with extensive disabilities have only simple needs, that somebody else easily can interpret and anticipate. Preconceived notions about our needs and preferences are evidence of a still wide-spread paternalism and can become self-fullfilling prophecies that limit our growth as human beings: Children with extensive disabilities who live in residential institutions learn fast that asking for assistance too often or at the ”wrong” times can have its consequences in terms of resentment or even retaliation by the staff. In the institution I lived between the ages 17 to 22 I learned to get by by limiting my needs, by not showing any anger. In my experience, this training at an early age over long periods can change personality traits and create adults who appear cheerful and grateful but have difficulties in forming opinions of their own, in being assertive and clear about their expectations. This outcome, in turn, reinforces the common prejudice that disabled people are friendly and harmless, malleable and in need of protection.

Another quality dimension is the amount of time assistants are to spend with individual users and, related to that, whether there are user activities which assistants are not to support. The needs assessment conducted by funding agencies often covers only the most urgent and basic user needs as interpreted by the service provider, for example assistance with getting out of bed, personal hygien, dressing, warming up frozen food. Users who are dependent on assistance from another person for leaving the building and travelling in town, would be literally under house arrest - unless they have family members or friends who are willing and able to accompany them.

In Stockholm’s municipal homehelper service (hemtjänst) needs for assistance are expressed in terms of interventions - assistance with a number of defined activities such as the above-mentioned basics without time limits. In practice, however, there is no guarantee that users receive these interventions. Workers visit one client after another according to a predetermined schedule. A delay anywhere in the chain of clients during the day – at a user or in transport between users – and the remaining clients in the schedule will end up with less time. Such cicumstances make it extremely difficult to continue one’s education or work, plan activities outside the home or travel. To have a family of one’s own - without dependence on family members beyond the culturally accepted norm - is impossible.

In Sweden, in the current trend towards professionalization and medicalization of personal assistance, personal assistants increasingly refuse working with pets, house or garden. In their interpretation personal assistance entails mainly work with the assistance user’s person. This notion is far from the original concept where personal assistants are to support all activities that users had carried out by themselves had they not been disabled.

Yet another dimension in assistance quality is the individual users’ influence over assistants. Are users in the position to hire anybody as assistant who suits their needs? Or can they only exercise veto power against workers who they do not get along with? Do users have a say in setting assistants’ wages?

A controversial quality criteria is formal training for personal assistants. Parents of disabled children, politicians, administrators and other professionals tend to equate formal training for personal assistants with high quality of services. In Sweden, secondary schools and adult education institutions offer training for personal assistants ranging in duration from several weeks to a year and more. Interestingly, these government supported courses seem more in demand in the country’s de-populated areas plagued by chronic high unemployment than in the metropolitan areas with much more job opportunities. Many younger unemployed adults receiving government allowances while taking these courses probably never work as personal assistants.

The courses evidence an increasing professionalization of personal assistance in Sweden welcomed by politicians, service providers, labor unions, parents of disabled children or relatives of persons with cognitive or psychiatric disabilities.The subjects taught in the courses also suggest a return to the medicalization of the services, since they cover medical diagnoses leading to disabilities or the intricacies of the legislation surrounding personal assistance often involving medical aspects. Many personal assistance users, particularly adults with physical disabilities and ties to the Independent Living Movement, feel that this type of training for personal assistants is detrimental to their role as supervisor of their assistants; it suggests that users are not equipped to instruct assistants themselves. While not denying that this might be true in the case of young children or some persons with cognitive disabilities, they suggest that government, instead, subsidize training offered by the Independent Living Movement to users designed to assist them in becoming better supervisors and employers. To get the most of one’s services the user, as boss or supervisor of the assistants, must train assistants in how they need to work which will, of course, depend on the individual users’ needs and preferences. A generalized course for prospective personal assistants implies that our group has homogeneous assistance needs despite our obvious differences not only in terms of type and extent of disability, but also in personality, age, family role, vocation, interests and aspirations in life. Such courses, according to the Swedish Independent Living Movement, are examples of One-Size-Fits-All solutions resulting from stereotypical notions about persons with disabilities.

An additional crucial quality criteria for users is whether they have a budget, as integral part of the service, for covering the costs of accompanying personal assistants for meals, transportation, entrance tickets or accommodations when out in town or travelling. Without such a budget the personal costs to users would double and only few would be able to afford going out or travel. The Swedish direct payments for the purchase of personal assistance services contain an amount that can be used for this purpose.

The Swedish Personal Assistance Act : An example of a demand-driven policy

Sweden has a national personal assistance policy that was highly influenced by a pilot project with personal assistance initiated and run in Stockholm in 1987-1989 by the Swedish branch of the international Independent Living Movement.^v Therefore, its features are influenced by the Independent Living philosophy as outlined above. These are

• personal assistance for eligible persons is a legal entitlement and independent of the budget of the funding agency, the tax-funded National Social Insurance (Försäkringskassan)

• users’ assistance needs are expressed in number of hrs /week

• needs assessment decisions can be appealed in administrative courts

• money follows the user not the service provider

• recipients can buy services from any provider or employ their own assistants

• eligibility is independent of user’s or family’s income or property

• payments’ amount depends only on user's needs of assistance, not on the type of service provider

• costs are covered such as market wages, social insurance fees, administration incl a budget fort accompanying personal assistants’ costs for transportation, meals, accommodations

• recipients are fully accountable for how funds are spent.

Currently 16,000 Swedes receive cash benefits for Personal Assistance (Sweden’s total population is near 10 million). Nearly one thousand private and public entities offer Personal Assistance services. The Swedish Personal Assistance Act can serve as an example of a policy for demand-driven services, because it creates a personal assistance market by enabling recipients to buy services or employ their own assistants directly. Assistance needs in terms of the number assistance hours needed by the individual are assessed by case managers at the tax-funded Social Insurance Fund. Each month recipients get an amount that corresponds to the costs of these hours. Users pay white wages at going market rates for this type of work. Private companies can cover their expenses and make even modest profits. More information about the Act and its regulations is provided elsewhere.^vi

Some outcomes of the Swedish Personal Assistance Act of 1994

The Personal Assistance Act has been in place since 1994. Government commissions and researchers point to unquestionable and significant improvements in the recipients’ quality of life in comparison to what they had before.^vii Before 1994 our group had community based services in the form of municipal community-based services or we lived in semi-institutional cluster housing facilities.^viii There, each had his or her own apartment and shared assistants from a nearby staff apartment. By the 1980s, residential institutions had been phased out in Sweden except for group homes where 4-5 persons live together in a house or large apartment with common staff. Compared to what it would have cost to provide the same number of hours through municipal home helpers direct payments for Personal Assistance have saved the Swedish taxpayer some € 3 billion – and that at considerably higher service quality.^ix Also compared to group homes personal assistance has been shown to be cost-effective.^x In addition, as official government reports and independent researchers show, Personal Assistance users consume less healthcare, special transportation and other local government services.^xi

An important outcome of direct pamyments for Personal Assistance services is their impact on the Swedish national economy. With the help of personal assistants a number of assistance users are able to work – currently 16 per cent of all direct payments recipients. Another 24 per cent could work, if they had more assistance hours.^xii To these numbers we can add the family members who can concentrate on their career because they do not need to help us anymore.

The 16,000 recipients of the direct payments for personal assistance together employ some 50,000 personal assistants on a full-time basis. The City of Stockholm, the nation’s largest employer, employs the same number. Thus, personal assistance is an important labor market policy instrument - an inexpensive one at that, since over 50 per cent of the direct payments which Personal Assistance users receive go straight back to the state in the form of social security contributions, income and VAT taxes. In Sweden, where no formal training for personal assistants is required, the labor market for assistants can instantly adjust to supply and demand changes. Our assistants – often immigrants, young people in transition between school and working life, free lancers and part-time workers – would often have to rely on social welfare, if they did not work for us. Their wages go mainly to basic consumption thereby stimulating the domestic demand. Constructing and maintaining residential institutions, on the other hand, is much more capital intensive and does not nearly benefit the national economy as much.

Personal assistance should be tested for old people

At the age of 72 benefitting from direct payments for personal assistance I’m very privileged compared to people who become disabled at my age. In Sweden, persons who acquire a disability after the age of 65, by law, cannot get these payments and have to rely instead on residential institutions or local governments’ community based services. Both alternatives would be a desaster to my and my family’s quality of life. Many citizens of my age would experience a tremendous boost in life quality with the solution I have. In Sweden, its costs for old persons with the largest assistance needs have not yet been estimated. Due to personal assistance’s higher cost effectiveness compared to the alternatives, the additional costs, if any,.might not be insurmountable. Why not test this contention in a pilot study?