No shortcuts on the road to employment for persons with disabilities

 

The Independent Living Institute is a policy development center specializing in consumer-driven policies for disabled peoples' self-determination, self-respect and dignity. We run pilot projects, publish a virtual library and interactive services for persons with extensive disabilities. We are experts in designing and implementing direct payment schemes for personal assistance services, mainstream taxi and assistive technology. We are based in Stockholm, Sweden. 

Independent Living is a philosophy and an international civil rights movement of persons with disabilities working for full citizenship, self-determination and dignity. In Spain the movement is called Foro de Vida Independiente

 

 

You can tell how far a society has come on the road to integration of minorities by looking at parenthood and gainful employment. Parenthood and employment are the acid test. You can tell me what you want about what is done for persons with disabilities (PWDs) but if they, as a group, are less likely to marry and have children and if they are under-represented in the work place, they are still second-class citizens. These two areas of life are indicators for how disabled people are doing in all other areas such as education, housing, income, social status or psychological well-being.

 

During the last decade governments have shown an increased interest in the employment situation of their disabled citizens. Is that because of a stronger recognition of our citizenship rights which include work? Perhaps so. But there are also powerful macro-economic factors at play. Leaving people with disabilities outside the economy is inefficient, it is a waste of human resources: it has been estimated that it translates into a forgone Gross Domestic Product of about 5-6 per cent.

 

There is also a powerful demographic development playing into our hands. Given the ageing population in most industrialized countries, a steadily decreasing labor force has to feed a continuously increasing non-working population. Thus, any increase in the number of wage earners is welcome, and even more so, if social insurance recipients become social insurance contributors.

 

On the micro level, breadwinners, instead of depending on welfare benefits, can contribute to personal and household income and, in this way, take their rightful place in family and society. To have work and earn a living is a pre-condition of starting a family of one’s own in many cultures. Deriving income from work is particularly important for PWDs who, as a group, have higher costs of living on account of their disabilities, yet, at the same time, have lower incomes.

 

Research shows that, second to the economic benefits from working, colleagues at work are the most important source of satisfaction derived from work. These are the people we spend half of our waking lives with. In Sweden, many retired people feel lonely upon losing the daily contact with their workmates.

 

Work determines one’s position in society and even one’s identity in many cultures – in many countries people who meet for the first time present themselves for each other by telling what they do for a living.

 

Work is one of the most important opportunities in life to test, to develop and to reap the fruits of one’s innate potential and personal interests.

 

The importance of gainful employment for individuals including for PWDs has often been recognized in international documents, most recently, by the United Nations Convention on the Rights of Persons with Disabilities which in Article 27 addresses the need of member states to recognize the right of persons with disabilities to work, on an equal basis with others, and prohibits discrimination on the basis of disability in all matters of employment.

 

For over a century governments have tried measures to get people into employment who are unable to work for various reasons including a disability. Among the more traditional ones have been sheltered employment, wage subsidies, protective legislation and quota systems.

 

In sheltered workshops workers are protected from the demands on work performance imposed by competitive markets. Private charity organizations or public agencies run and subsidize these segregated programs. Workers typically receive below market wages, have limited career advancement opportunities and face the social stigma of working in a place which gives them ”something to do”.

 

Government wage subsidies are intended to compensate employers for the implied reduced performance of disabled workers. Most often subsidies cannot be applied to wages above a certain amount. Thus, there is no incentive for the employer to include such workers in their training programs and to promote them. In theory, wage subsidies enable employers to test an employee’s abilities and to subsequently award him or her a regular contract. But in reality this happens rarely. In Sweden , for example, less than one per cent of workers on subsidized wages make the transition to regular unsubsidized contracts. While subsidized wages might be helpful to get individuals with a disability into the labor force, it is at the cost of being stuck in low-paying positions and of contributing to the preconceived notion that disabled workers perform less than their non-disabled co-workers.

 

To protect workers through legislation from being dismissed, in case of an injury, has been a common policy.  For those who already are employed such legislation might be a blessing, but there seems to be evidence that the legislation makes it more difficult for already disabled persons to find work. Employers will think twice about hiring somebody whom they cannot dismiss, if the person and the work expectations do not match.

 

Quota systems require employers to have a certain percentage of their staff consisting of PWDs. Quotas often go unfilled. Employers seem to prefer paying fines for not filling their quota over hiring PWDs. In most OECD countries the average quota fulfillment runs from 50 to 70 percent. In Germany, not even the Ministry of Labor fills its quota.

 

Anti-discrimination laws make it illegal to base employment decisions on a person’s disability. This type of legislation began in the United States, with the Americans with Disabilities Act of 1990 (ADA), and was soon followed by similar acts in Canada, the United Kingdom, and Australia. The reasonable accommodation requirement is central to non-discrimination legislation. Employers may have to restructure a position, modify or decrease working hours, adapt the workplace and pay for assistive devices or services. Such laws are expected to reduce employment discrimination, increase access to the workplace, and change perceptions about the ability of people with disabilities to be productive workers. To date, these laws seem to have been more successful in preventing discrimination among those who are already employed.

 

Flexible and shorter working hours can suit a great many PWDs who often would not be able to work at all, if there were only offered full-time positions. For the last 25 years I have been working on the average for less than full-time and with flexible hours. Not only has this arrangement enabled me to work, I also have had hardly any sick days. 

 

Another measure to encourage participation in the work force are supported employment programs designed to help integrate people with disabilities into the competitive labor market. Supported employment provides support services such as job coaches, transportation, assistive technology, specialized job training, and individually tailored supervision, which enable a disabled person to learn and perform their jobs. Supported employment is one approach where success has been documented for persons with extensive disabilities, such as psychiatric, learning disabilities or traumatic brain injuries.

 

I would like to comment the expectations on assistive technology, in particular, information technology such as computers and the internet. The information society has been with us for roughly a quarter of a century. In the 90’s the computer was hailed as the great equalizer of opportunities. With a computer disabled people would compensate their impairments and perform just as much as people without disabilities. In some countries tele-working was seen as the solution: disabled people, in the comfort of their homes, would work linked to their employers by broadband and internet. At the Independent Living Institute we’ve had considerable experience with this solution. People in other parts of the country or other continents, for that matter, have worked for us. Assignments are discussed by email or Skype, finished work is turned in electronically. True, many people with extensive disabilities are employed today due to computers, email and internet, people who would have been unemployable only 10 or 20 years ago. But the ability to seek information, to write or perform calculations is not the only requirement. You first have to have the necessary education, work experience, personal contacts, social skills and self-confidence. Those are more difficult to acquire than laptops or software for speech recognition.

 

Trainee- or internships provide realistic working experiences and personal contacts. One example is the collaboration between the U.S. government and private enterprise to provide summer work experiences via internships to many hundreds of youth with disabilities. The results of these efforts have been increased career awareness and skill building for youth, which has often led to longer-term placements with the employer offering the internship. At the Independent Living Institute we recently collected data, together with 8 European Independent Living organizations, on internship or trainee programs provided by governments to young adults including PWDs. The result was devastatingly poor. In Spain, 35 state traineeship programs were identified, none of them were open to PWDs.

 

Have government programs intended to combat unemployment made any difference? What is the labor market situation of PWDs? In OECD countries, the employment rate for disabled people in the late 1990s was 43.9 per cent compared with 70.8 per cent for non-disabled people. In Spain, for 2003, the figures were 22.1 per cent for PWDs and 50.5 per cent for the overall population. Sure, we do not know how bad the situation would be without government interventions, but it seems safe to assume that a number of barriers to employment remain unaffected by governments’ efforts.

 

At the level of the individual, family and society in general have low expectations on PWDs regarding work. Thus, young persons with a disability receive little information about working life. Nor do they meet many role models of disabled adults with interesting and fulfilling work. Also, PWDs have few personal contacts which could be used for purposes such as looking for work. In Sweden, two thirds of all job seekers find employment through their personal network.

 

At the system level, education for PWDs from kindergarten on tends to be separate and unequal. The consequences contribute to the above mentioned lack of personal networks. Also, without natural contact and competition in regular classroom settings it is difficult to compare oneself with non-disabled children and to arrive at a realistic assessment of one’s abilities. Besides, how encouraging is it being called “minusvalidos” – meaning “of less value”?

 

The housing market for PWDs is very limited. In Stockholm, despite building norms since 1978 prescribing full accessibility in all newly constructed housing units, not much more than probably 10 per cent of all housing is accessible to wheelchair users. I would be surprised, if Spanish cities had a more accessible housing stock. The lack of accessible housing affects geographical and social mobility and isolates PWDs. In particular, living in residential institutions or parental homes limits the disabled person’s choices and responsibilities over one’s life. The result is known as hospitalism - decreasing competence in practical tasks and social skills, low self-confidence and stunted personal growth regardless of age.

 

Inaccessible transportation and infrastructure in general diminish freedom of movement for PWDs.  Inaccessible environments not only discriminate against us in very concrete ways, they also affect us in more subtle ways. Thus, a person who is considered immobile and environmentally incompetent might easily be considered to be incompetent also in other ways. A disability limited to one aspect of a person is associated with global incompetence in all areas. An example: Assume that you as the employer are interviewing a job applicant for a staff position. Your office can be reached via a flight of steps only. The job applicant is a wheelchair user and has to be carried upstairs. In this situation, is it not likely that the applicant's helplessness in climbing stairs might also affect your assessment of his or her mental abilities? And is it not possible that a person who all his life is made dependent on other people at every step will begin to see himself dependent on other people also in other respects? For the people around us and even for ourselves it is not always clear that the problem is not within us, is not because we are incompetent and passive, but because architects, planners and politicians deny us our equal rights. So, what is the conclusion? We need legislation that stipulates universal design in all new construction and in major renovation in housing and public buildings including work places, legislation that is enforced through sanctions. Universal design means that buildings, infrastructure and work tools can be used by all.

 

In most countries eligibility to social support is means-tested and linked to income. As soon as you earn money you might lose a range of benefits and perhaps end up worse off in monetary terms than before. In some countries disincentives to work cause marginal effects of 100 per cent. For every Euro you earn, you lose one Euro in benefits. The authors of a recent OECD study concluded that work disincentives of benefit programs are significant social problems.

 

Persons with extensive disabilities need assistance by others in the activities of daily living such as getting up in the morning, going to the toilet, getting washed and dressed. For many people like myself personal assistance is the key to a normal life in the community, with a family of their own and with work. Without my personal assistants I would not be able to work or travel. In countries without government payments for personal assistance people like me are automatically condemned to unemployment.

 

Some labor market policy instruments are probably to blame for the very result they are intended to prevent. I already mentioned legislation that assures disabled workers a higher job security than non-disabled workers and thus makes employers hesitate to hire PWs.  Other counterproductive effects are caused by quota systems and by wage subsidies. A quota implies that PWDs, by nature, are such incompetent workers that employers would never hire any, if the government would not force them to do so. Wage subsidies, by paying employers for hiring PWDs, suggest that PWDs cannot perform as much as non-disabled workers. In this way, prejudices against disabled people are effectively maintained by our governments – despite the best intentions.

 

In conclusion, the ability and readiness to work is a chain with many links. All links need to be in place, if a person is to work. Each of the links, such as inclusive education, growing up with one’s family instead of an institution, accessible transportation systems, the same range of housing alternatives as other people   - all these are important civil rights. Only when PWDs have achieved full citizenship rights in all areas of life will our employment rate approach that of the non-disabled population. There are no shortcuts.