Einar Helander

EINAR HELANDER PROFILE

    Helander has since 1950 authored some 200 publications: books, country reports, and documents, related to medical and social research; health and social policies; education; management; personnel development; programme initiation, development and evaluation; public education, and information. The core of this is reviewed below, showing a path; the most pertinent parts of the early research laid the ground for following developments, eventually leading to the development of global observations and social action programmes.

Period 1. 1950-1962. Research: muscle biology.

Service organization. The Hospital services were built up and decentralized services followed to cover the needs of all other hospitals and health services of the city, homes for elderly and chronically ill. Home visits were introduced , distribution of technical aids; and vocational rehabilitation was initiated. Staff support was given to the hospitals for mental disorders and elderly, the total beds of these categories outside the University Hospital were some 4,000. Helander initiated the first cardiac rehabilitation programme in Northern Europe, and started co-operation with the World Health Organization. Close co-operation with the Social Welfare and Social Security Organizations of Gothenburg was introduced. All organizations of persons with disabilities, and parent organizations were invited to participate.. The community gave them office premises and community subventions to contribute to their management costs. A new school for physio- and occupational therapists was started.   

Central policy evolvement
In 1968, Helander left for Stockholm and an academic position at Karolinska Institute, and was for six years the Chief Consultant of the Government’s Board of Health and Welfare’s Division for Rehabilitation. This was during a period of enormous expansion of Government assistance to persons with disabilities: improved pensions, transportation assistance, grants for technical aids and investments in special apartments, installation of traffic signals for deaf and blind persons, rules to make official buildings accessible for wheel-chair users, providing free cars to persons with severe mobility problems and so on.  Eventually, all residential institutions for persons with disabilities were closed; appalling conditions in those had been revealed already in the 1930s and Helander visited many in the 1960s. Disabled persons were eventually moved to their own apartments and many given employment. These investments, which was supported by all political parties, were based on human rights considerations and made Sweden the most developed country in the world in this area.

     Meanwhile, Helander was the Chairman of the Health Ministry’s Committee organizing the 5-year speciality training in the new speciality of medical rehabilitation for doctors. At this time a massive expansion started of rehabilitation personnel, among them physical and occupational therapists.  Social workers, vocational councillors and psychologists were recruited to all Rehabilitation Departments, to be part of the teams.  A national programme  started to involve all  national organization of persons with  disabilities  and  of parents  to form  a joint Board,  to contribute to  the planning and give advice  to the Government  for services aimed at them. The purpose was: full political participation, access to equal opportunities and improved quality of life.

Studies of persons on long-term sickness leave.

    In the early 1960s, the Swedish Parliament introduced legislation which required persons who were on long-term sickness leave (LTS, the limit was set to 90 days) to undergo rehabilitation. Many European countries had, or were preparing similar laws. There was no research preceding this legislation to show what to do, how it could be effective, and if so, for whom. No programmes had been designed or tried out.  Helander from 1962 to 1968 in co-operation with the Social Security (SSA) authorities studied extensive files of some 3,000 random LTSs from the Swedish Western counties of Alvsborg and Gothenburg. It showed, that the LTS´s could be divided in roughly four main groups

1. Those with health causes that required prolonged treatment, such as for cancer, stroke, chronic neurological diseases, chronic infections, such as tuberculosis, with sequels after traffic accidents. or with recurrent mental disorders.
2. LTSs with lethal diseases.
3. LTSs who were given long leave periods, that were unreasonable, and where the prescribing physicians had not acted professionally.  The SSA (which had employed its own doctors with administrative responsibilities but had no clinical activities), referred a large sample of these patients to the Gothenburg Rehabilitation Department, for many the result was the LTS’s immediate return to work. 
4. Those who did not belong to any of these groups. It was clear to SSA that this fourth group needed to be researched to better detect the causes of their LTS, and a suitable programme to rehabilitate them should be instituted.

     It was noted that the frequency of LTS was in rapid increase, and it was especially disturbing to see that it often lead to early disability pensions (for life), also among young persons. Some ten percent of the population was already on such pensions, and other ten percent in various temporary and training and “holding” programmes. This occurred in a period of low unemployment.

In 1970, Helander approached the SSA in Stockholm.  A joint research programme was designed to

1. study the causes of LTS, especially in group d) mentioned above.
2. when required,  design  and carry out individual rehabilitation  programmes and find  out if these could reduce future sick leave, as well  as monitoring some other factors. Among them was consumption of psychopharmaca.   

    SSA in 1971 referred to the Stockholm County hospital Department, where Helander was based, the complete files of 2,000 LTS’s. These were randomized into a study and a control group, each with 1,000 cases. There was no attrition, as the patients were legally required to undergo examinations and interventions. The patients of the control group were monitored but not contacted; they continued treatments with their family doctors. The study group   underwent a series of elaborate health, social, and psychological examinations. Data were received from social, alcohol offences and criminal registers. A rehabilitation programme was designed for each of them and carefully implemented. Follow-up continued until 1974.

    The final evaluation showed none of the expected effects of the programme: compared with the control group there was no significant differences in future sick leave, or in re-employment rates of those who lacked jobs, and in the intervention group there was even a 30% increase of the consumption of psychopharmaca, indicating no reduction of mental problems. 
Why this lack of results?  The statistical analysis showed a very high prevalence of childhood traumas: abuse and neglect at home, parental violence, alcohol problems, mental disorders and criminality among caregivers, and poor school performance. The social problems continued from childhood into adulthood: irregular work, unskilled occupations, family disturbances, involvement in violence, many short-term sick leave periods, alcoholism and criminality: half of the men aged 50 and above had a criminal record. 

    The results of the study were presented in a written report to the SSA. Helander pointed out to the SSA that the referred LTSs were a group for whom their condition was an ultimate point in a trajectory that had started in their childhoods, and that other more adequate interventions should be sought: preventive rather than rehabilitative methods should be tried. These interventions should be based on increased attention to the quality of child home care and school problems.  Risk children should be better identified and home supervision provided. Families needed more parental training and technical support, schools should include parenting in their curricula, media should take a more active role.
Later on Helander returned to this subject using international data, now published in the book “Lost lives” (2011).

    Helander left Sweden in 1974 for WHO, and was unable to actively follow up the national future development resulting from this lesson.

Period 3. 1974-2002. Rehabilitation, international programmes

     A multi-country study by Helander at WHO in 1974-75 showed that in the developing countries there were almost no significant services for persons with disabilities. Apart  from  a  few national centres  in larger countries,  and  an array of  hundreds  of mostly small NGO-sponsored  residential  centres, not much could be found. Besides these services had   high costs, low turn-over of clients, poorly trained personnel, and in many of the residential centres there was rampant abuse and neglect. Furthermore, in these countries there were very few nationally trained professionals; expatriates (if funds were donated) were often recruited to fill the gaps. Government funds were totally inadequate or nil, and responsible ministries looked for foreign aid to finance all development in this sector.  
A separate study was made to assess the prevalence of global disability. With only preliminary data available and no international agreement on the definition of disability, an estimate that 10 % of the global population needed services due to disability was proposed.  It was concluded that the “standard” programme used for rehabilitation services in the developed countries was not suitable for the poor, developing countries, which were in the focus for the World Health Organization. Totally different approaches had to be found.

Conceptualization of community-based programmes for rehabilitation (CBR).
Further country visits revealed that in local villages and peri-urban slums there existed scattered, effective indigenous efforts to train disabled family members.  Concerned parents trained their children with disabilities in moving, communication and daily life activities. For example, blind persons were taught orientation and ambulation, and those with deafness sign language and lip reading. For victims of polio simple walking bars and crutches were made for their training. After visiting nine developing countries in different parts of the world, Helander found that indigenous technologies varied very little from one location to another.  A decision was taken to codify, and use this technology for the WHO programme. The challenge would then be to mobilize more families, people with disabilities, and in the end entire communities willing and able to adopt this technology, and furthermore to mobilize the local – and eventually the national – resources needed for support (bottom-up programme).  This programme was named “Community-based rehabilitation.”  The first step of its implementation was to author, try out and evaluate a detailed 800-page Manual with Training Packages for family members and with several Guides for the local Community. The experimental first version of the Manual was ready in 1979, but with the extended testing and administrative delays it was finally published by WHO only in 1989. CBR programmes now function in over 100 countries. 54 translations have been reported to WHO. The Manual is still available on-line with no changes from WHO (see books on disability and rehabilitation).

Formulation of CBR policies.  
The WHO adopted in the 1970s the “Health For All” programme, of which rehabilitation was a component. The organization has in co-operation with ILO, UNICEF and UNESCO has adopted CBR as a joint policy. 

Development of CBR management and evaluation programmes.

    The needs for management development were recognized early. Educational materials were developed (see books on disability and rehabilitation) in the early 1990s and some 200 senior staff from 90 developing countries participated in courses on planning, cost assessments, service development and evaluation systems.
In 2010, the present WHO rehabilitation staff in co-operation with organizations of people with disabilities published a Manual with Guidelines for the CBR programme.

    A detailed review appears in: Origins of CBR.

    Helander retired from his last UN post in 1999. He still held CBR management courses and undertook country assignments until 2002. He then started working in a closely related area, described below. 

Period 4. 2002- 2011, International studies violence against children, its sequels and prevention.

    Helander’s first observations on how common child abuse and neglect were, and how serious their sequels were both for the individual and for the society at large were first made in the 1960 observations on disabled persons confined to residential institutions in Sweden,  and on patients with long-term sick leave (see above). During the entire period 1974-2002 he systematically enquired about violence against children in the developing countries he visited: in villages and slum areas everywhere he observed how common such violence was, how hidden it was from visibility and how rarely it was openly discussed.  

    In 2002, Helander started to review the existing publications on the subject of childhood violence, most notably a large World Report from WHO, followed by a whole series of their books and documents. It appeared, however, that is was complicated to get international prevalence data on violence against children. Better known were the nature, and extent of the sequels of adverse childhood experiences which had been studied by Vincent Felitti et al. and published in some 80 publications. David Finkelhor et al. had since the 1970s spearheaded research on child sexual abuse and multi-traumatisation, and Murray Straus and co-workers on child physical, emotional abuse, neglect and partner violence. In addition, there are a large number of scientists who had made observations on the neurobiological consequences of child abuse and neglect. Few studies, however, included marginal groups, such as those living in institutions, the homeless, the un-employed, those having no telephone, alcoholics, criminals and addicts.  Most research has been done in the USA, with little or no reference to the conditions in the developing countries.

    Trying to fill up these gaps in research, Helander screened some 40,000 articles on related subjects on PubMed and other relevant data bases.  Drawing on these,  the existing sources referred to above, and on the data and reports he had collected during his international country appointments he has authored three books on the subject, the last is Lost Lives (2011). It was eventually possible to establish that violence against children is pandemic, its sequels are massive and serious, and that little action has been taken to prevent it, and to assist the victims. It is still an area affected by a conspiracy of silence, even reflected in medical textbooks.

    Violence against children is a component of the global violence.  This violence appears on different ecological levels: interpersonal and collective   (community, national and international).  Helander in the penultimate Chapter reviews latter. Communities are frequently “governed” by organized criminals, “druglords”, or by oppressive and corrupted family “dynasties”. In such communities, the populations are often assaulted, see their housing, property and food supplies destructed, many are abused, imprisoned, tortured or killed. Since 1945 there have been close to 200 wars and civil wars; war is a permanent state of our world.  But the most disturbing fact is the high prevalence of democide: country rulers killing their own unprotected citizens. In the 20th century, 7.9 percent of the world population (262 million people) were killed by democides, the highest proportion since the 16th century. During historic times there have been 5.4 times more democides than war deaths.  Added to this is other  nonlethal  demo-violence:  arrests, harassments and threats, disappearances  of family members, torture, and imprisonment.  A study combining World Bank data and human rights reports indicates that corrupted, oppressing, cruel, dictatorial leaders rule most of the world. It appears that among them psychopathic traits are common. What we observe is a global pollution of violence, which is destroying our basic human values, resulting in a dangerous, unequal and chaotic world. This brings us to disturbing questions about human nature; these are discussed in the ultimate Chapter of Lost Lives.