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"Practical Ideas for Rehabilitation"

(The following is taken from a longer paper entitled Empowering the Impaired by Ishita Sanyal, Director of a rehabilitation centre and clubhouse in Calcutta, India.)

Developments in the fields of science and technology have revolutionized Human Life at material level. But in actuality, this progress is only superficial: underneath modern men and women are living in conditions of great mental and emotional stress, even in developed and affluent countries. People from all over the world irrespective of culture and economic background suffer from mental illness and though a number of researches are carried out worldwide but till date it has not been possible to resolve the problem.

The most neglected invisible problem of the society in a developing country like India is the burden of mental problem, its effects and its outcome in the coming years. The World Health Organisation has warned that many countries will be unable to cope with a predicted boom in Mental Illness over the next decade. According to Dr. Gro Brundtland, the former head of WHO, “If we don’t deal with Mental Illness, there is a burden not only on Mentally Ill, on their families, their communities, there is an economic burden if we don’t take care of people who need our care and treatment.”
Few Facts

  In India over 125 million people suffer from Mental Illness.
  Prevalence rates have increased due to poverty, illiteracy, urbanization, industrialization, discrimination,
   better diagnostic methods, increased public awareness.
  After all drug treatment 33% of patients do not improve.
  Estimated population of chronic psychotic patients in India will be 50 millions by 2010.

But even then the government had no other option but to allocate funds on physical illness or disabilities like cancer, AIDS or any other problem than on Mental Illness. Lack of economic resources along with lack of professionals in the field has made the scenario even bleaker and worse. In India till date a person suffering from mental illness fails to receive any support either from Government or from any organisation. Disability Card, which is issued for all other disabilities except mental illness have remained a dream for us those who are living in West Bengal. Even the support of Disability Commissioner in this issue failed to provide any needed solution.

The mental problem is an invisible problem and so people cannot feel it or visualize the impact of the problem. Neither can they understand the impact it can create on the individual who is affected and his family members. The society is apprehending them as a burden and not putting efforts to utilize their potentialities or putting adequate efforts to change them again in to a productive member of the society.

The problem with illness like Schizophrenia is even more. They often remain a burden to the society. Some live their whole lives within the four walls of their dark room, remaining secluded and accepting a sedentary lifestyle where they spend the day and night without doing any effective work. They live their life on the mercy of other family members.

It is really difficult for the family members too, to make arrangement for a non-productive family member’s food, clothing, shelter and ever increasing cost of pharmaco-therapy. So these people, who are suffering through no fault of t heir own, are sent to homes or government hospitals, which are even worse than jails. Little attention is paid to their human rights, their feelings or their emotions –although a large part of their problem centres on feelings and emotions. Some start believing that they are not members of this world anymore – they are here by mistake or by chance not by choice. For some the agony is unbearable and they comit suicide. – some dare not as they are too weak physically and mentally to take a bold step like that.

To improve the quality of life of these persons rehabilitation centers are needed. These can provide them with vocational training to give them hope: to work on bringing back motivation, to remove their apathy and lack of drive and to make them capable to start earning.

It is seen that in urban populations the most important need for a person suffering from mental illness like schizophrenia is work and economic independence. So vocational training has the possibility of making them productive and is a method to reach more people.

Vocational training- People from both western & eastern world can overcome the burden of the disease if they can successfully employ themselves in creative productive works. Even in India, where a person gets too much support & does not need to earn money due to over protectiveness of parents, -the prognosis & functional level remains below others who are actively participating in rehabilitation process.

Selection of Vocational Training- Selection of Vocational training depends on the individual aptitude ability & interest of the candidate. Often the parents who accompany the patient have a preconceived idea about their child’s capabilities. They often try to guide us & discourage us about some Vocational training which they think cannot be suitable for their child. It has been seen so far that almost everyone has some creative abilities and if this can be successfully utilized it can help them in the long run to overcome their problems and help them towards becoming a productive member of society. They can utilize skills learned to help them reduce their anxiety and in some cases to earn their livelihood.

 
A Few Simple Methods of Vocational training-
Collage works often help people to reduce their anger & aggression, water colours & works with plaster of paris helps them to overcome compulsive tendencies in them.

To unfold the hidden capabilities of these person we always encourage them to explore their capabilities starting from simple drawing, fabric works, glass painting, Block printing with vegetables, colourful earthen pots, colourful earthen wall hangings, jute works, jute decorative folders, bead work, bead ornaments, animals made of beads, mobile cover, embroidery etc.

Few Simple Techniques- At First we ask the clients to explore with colours & draw pictures. Within a few weeks, we can thus identify the person’s capabilities in drawing, painting & fabric works. Those who cannot draw or paint well or if they have trembling hands for which they do not have control over their brush are asked to cut the vegetables like potatoes, ladies finger whichever is available in their home in different shapes. They are then asked to clolour card/ file / clothes through the blocks developed by them or their friends from these vegetables. This is the simplest & attractive training programme where a client becomes active in a very short period of time. Other clients who are working for years together then give the final touch to the handicraft products developed by them.

Fabric works- Fabric works can also be started with block printing. As we lack funds we cannot afford to waste our clothes in the hands of person who are yet to gain control over their fabric works. For this reason starting with their own old ganjee or clothes help to practice them without any wastage. They too feel proud decorating their own clothes themselves. As they gain control we give them clothes to do it. We often give strips of clothes where they do the fabric works, and then it is stitched to the ganjee or shirt, which then looks attractive.

Glass Painting- This can be a very good handicraft product. To start with we often asked them to do simple geometric figures & then proceed to more complex drawing patterns.

Earthen pots, wall hangings- This too is started with line drawing, or geometrical figures, which is later, developed in to attractive drawings/paintings.
Handicrafts Works-This is started with Kantha stitch, stitching falls in a sari & then they learn other stitches & make table cloths, table mats, napkins, Handkerchief, tea cosy trey clothes, salwar suits, saris etc.

Marketing the products- Marketing the products is not very easy especially in India where handicraft items are readily available. The success of this sort of rehabilitation programme for persons with mental illness depends on the perseverance, the ability to motivate others, to make it a mental health movement. If the parents’ group makes it a practice to buy & only buy the products made by their children then it can be easy to get the initial market. This certainly doesn’t mean that they will buy only the products made by their own child- but think of all suffers as their children & buy the products made by them. If this can be made a movement like “swadeshi movement”developed by Gandhiji can be developed. And if the parents, their family members & friends have feelings for the cause & can start developing the habit of buying the products made by these persons with mental illness, then may be one day we will be able to economically rehabilitate every one of them; may be we would be able to change the world for them.

But we must be very rigid about the quality of the products, as no one should buy the products made by them out of sympathy.
Computer- Computer training is suitable not only for the Western world but also for eastern world .We are providing computer training for years together and all our clients are computer literate.

Computer often provides a tool for psycho education, social rehabilitation & economic rehabilitation too. The person who comes to our center at first lacks the self-confidence and self-identity. They are not sure about themselves. Writing their names on computer screens in different styles gives them the pleasure to learn more. The knowledge of the Internet helps them to get proper psycho education about their sufferings and possible solutions. This helps them to learn about their difficulties in a safe, criticism-free environment.

As they generally lose control over their lives – gaining control over a machine like computer helps them to gain confidence & desire to gain control over their lives. Computer training along with spoken English classes often helps them to get some jobs in nearby areas. They can even do computer typing in small computer institutes that have grown enormously in India or other developing countries.

The role of Parents in Vocational Training- Parents have a very important role to play in the rehabilitation of persons suffering from mental illness. It has been seen that supportive parents who are not overprotective can help their child to gain adequate confidence & functional level & on the other hand too much overprotective parents creates a hindrance towards the growth & development of their affected child.

Vocational training along with learning few basic life skills for their proper functioning like going to the bank, depositing electricity bills, marketing the day to day products, taking a few responsibilities at home, looking after their parents, helps to improve their functional level and make them self-dependent. We also have some fixed responsibilities for all the clients at the centr: eg some setting the mat on the floor; some distributing the tea, some selling the products during exhibition; elder clients helping the younger ones to learn the training programmes. As we have to run the center without any monetary support from government or any organisation we try to utilize the human resources of our clients. This not only reduces the running cost but also helps to regain the lost confidence of our clients.

Social rehabilitation – This is the most important need for the people suffering from these disorders. Whenever, any human being suffers from any disease or crisis it is human to want the support, the comfort of family members, friends and community. This culture still now prevails in India – though there is a breakdown of extended family, due to the impact of Western influence on Indian society – but till now there is a huge difference between the lifestyle of Indians and that of the western world. Till now people care for their family members; parents support their children till their death and siblings take care of their affected family member. Till now the Rehabilitation centers run by the self-support groups of India are more effective than those run by professionals. In this background where the bondage of love and understanding is important, social rehabilitation of the sufferers is important.

Due to stigma, due to hopelessness, due to fear of rejection – the sufferers often try to avoid interacting with the society. This creates a barrier. Self Support groups helps them to first get the social acceptance. “I am still loved & cared by so many group members” help them to get the needed support & guidance. It is really surprising to see how they help their fellow friends during the annual tours from our center.
A few important things for proper rehabilitation are developing the feeling of togetherness, the bondage, the love, the “family feeling” – that we all belong to the same family / community. This helps a lot to overcome their deep-rooted insecurities & anxieties.


-Ishita Sanyal 2006
Founder Secretary, Turning Point, a rehabilitation center.
Director Disha, a child guidance center.
Member of WFSAD (World Fellowship for Schizophrenia & allied disorder)
Indian Representative of ISPS (The International Society for Psychological Treatment of Schizophrenias & other Psychoses)
Director of NAMI, India, Eastern Region.
Presenters mailing Address-27 Jadavpur East Road, Kolkata-700032
West Bengal, India
E Mail address-ishitasanyal@hotmail.com
Phone Number-9830069106/24392316


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The Indian case :

Among the events marking World Mental Health Day was a parade through the Indian capital, Delhi.

Campaigners described the neglect of people with psychiatric disability in the country as a national emergency.

The head of India's Institute of Human Behaviour and Allied Sciences said women faced the greatest problems, including being abandoned by their families following psychiatric illness.

He said that in his own institute, there were people who had been cured up to 20 years ago, but had nowhere to go.

Many of the issues surrounding mental illness in India are common to the developing world.

But the BBC's South Asia correspondent Mike Wooldridge says problems in India can be particularly acute because of its ever-growing population and limited public resources.

Nearly 25 million people in India are in need of mental health services.

Of these at least a third need help to cope with disability resulting from various psychiatric disorders.

Some experts have calculated that mental health problems contribute to an even greater reduction in the quality of life in India than tuberculosis or cancer. (Article Taken from UNI .DI 59 , 4 October 2001)
HEALTH-WHO-MENTAL DISORDERS



450 MILLION PEOPLE SUFFER FROM MENTAL DISORDERS: WHO

New Delhi, Oct 4 (UNI) A staggering 450 million people suffer from mental and behavioural disorders, which is among the leading cause of ill-health and disability worldwide while one in four people are affected by mental or neurological disorders at some point of time in their lives.

This has been highlighted in the World Health Report 2001 titled 'Mental Health: New Understanding, New Hope', which was released simultaneously worldwide today.

Releasing the report here, WHO Regional Director for South East Asia Region Uton Muchtar Rafei said that in the South East Asian region 27 per cent or nearly one third of disability is due to neuropsychiatric disorders. The mortality statistics however, does not reflect the burden of mental and neurological disorders, which cause untold sufferings. He said stigma and discrimination faced by persons with mental disorder and misconceptions about them was the major challenge in dealing with the problem. Moreover, the region faces great scarcity of trained manpower as there is only one psychiatrist in Bhutan, 65 psychiatrists for 115 million people of Bangladesh, 420 for 200 million people of Indonesia and only 3500 for one billion Indian population.

He called for urgent upgradation of services and trained manpower to deal with increasing mental and neuro- psychiatric illnesses in the countries of the region.

Dr Uton said that member countries should develop Community-based mental health programmes shifting from traditional practice of hospital based psychiatry. Through proper programmes and projects a lot could be done to reduce the enormous burden on mankind, he added.

Presenting a synopsis of the report, WHO Deputy Regional Director for the region Dr.Poonam Khetrapal Singh said that every year one million people commit suicide while 20 million attempt to kill themselves. These diseases are the leading cause of disability, particularly in the most productive years between 14 to 44 years.

The report underlines the importance of countries to have appropriate mental health policies, proper financing of mental health care and a thorough revamping of laws and practices in dealing with mental ill. The report includes ten recommendations which if implemented properly could go a long way in meeting the mental health needs of the population, she added.

This is the second news story filed by the UNI Special Correspondent.

( Article Taken from UNI AJ MS , BK1906 , 4 October 2001, ZCZC, DI 68 )


HEALTH-WHO-MENTAL DISORDERS : NEW DELHI

Dr Vijay Chandra, WHO regional advisor, Health and Behaviour, said that with greater life expectancy, the number of patients with neuropsychiatric disorders is likely to increase. This will have a social and economic impact with people facing rejection, isolation and a high risk of human rights violations. Moreover, in the absence of economic safety nets, few people have access to health or disability insurance, which further increases their vulnerability.

Listing the steps to be taken by the coutries, Dr Chandra said that mental and neuropsychiatric disorders must be treated at the primary health care level with the support of the community. Human resources need to be developed urgently with an increase in the number of psychiatrists and neurologists. General practioners, nurses and lay health professionals must be trained in identifying and managing patients and appropriate medicine must be made available at an affordable price.

He stressed the need for creating greater awareness in the community about such disorders. The national policies should be established and upgraded, programmes formulated and legislations must be strengthened to protect the human rights of these patients.

Dr D S Goel, National Consultant on Mental Health to the Indian Government, describing the situation in the country said major mental illnesses like schizophrenia, bipolar disorder and major depression affect a significant number of people and other psychiatric disorders are also quite common in the country and added that suicides and its attempts are growing particularly among women, children and adolescents.

Rapid urbanisation, breakdown of the joint family system and migration of young adults from villages to towns in search of employment has led to erosion of the traditional social security network and this has significantly contributed to the burden of mental illness in the country, he pointed out.

According to Dr Goel, future strategies include a ten-fold increase in the budget allocation for mental health in the tenth five year plan to Rs 150-220 crore. India would focus on district mental health programmes, strengthening departments of psychiatry in medical colleges, upgradation of mental hospitals, energising central/state mental health authorities and promotion of reliable community based research, he informed.

( Article Taken from UNI AJ MS HS1920 )

MENTAL illness is often perceived by the society in two diametrically opposite ways. First is being sceptical about a person's ability to work and perform his duties well after a period of mental illness. "They might consider this illness adversely when I am due for my promotion next year," said Anbu (not real name), a government employee as he recovered from an acute episode of Schizophrenia. Many others with similar concerns conceal their mental illness from their employees and choose to forgo their medical benefits.

On the other end, people, including policy makers, are sceptical about disability in persons with chromic mental illness. "They are just lazy. There is nothing wrong with them," is a common belief.

Significant advances in the treatment of psychiatric illnesses have helped many persons recover completely. But, we still have a small percentage of people with specific illnesses who do not improve with the available treatment options. They remain disabled. If you consider the incidence of mental illness and the population of India, this small percentage translates into a large number.

Dr. Thara, Director of SCARF (Schizophrenia Research Foundation) and Chairperson of the Rehabilitation committee of the Indian Psychiatric Society, says, "The disability associated with chronic mental illness is invisible. The impact on family members is considerable."

Take for example, Schizophrenia. It is characterised by delusions , hallucinations and other thought disorders. These positive symptoms usually respond well to treatment. Many also have what are called as negative symptoms, namely apathy, blunted emotional responses and paucity of speech. These lead to social withdrawal and lowering of social performance and cause disability in chronic schizophrenia. Factors responsible for chronic illness are delay in starting treatment, irregular treatment, early onset of the illness, poor occupational adjustment prior to illness, and certain subtypes of schizophrenia called simple schizophrenia and magical or religious treatment being sought first.

During the initial phase of Schizophrenia, there are chemical changes in the brain, which can be reversed by medication. As the illness progresses, subtle structural, irreversible changes develop in the brain. This coincides with the appearance of negative symptoms and disability. Once disability sets in, it does not easily respond to medicines. These persons need rehabilitation in the form of occupational therapy.

Even an apparently minor illness like Obsessive Compulsive Disorder (OCD) can be severely disabling for some persons who do not respond to medicines. Bala has to wash his bathroom, bucket and the mug ritualistically a few times before starting his bath. His bath takes another four to five hours, so he can't go to work in time. Each action or decision is an arduous task, as he struggles against repetitive and intrusive obsessive thoughts. He resigned his jobs, as he could not do any work while at office. The long hours taken to do a task may be amusing for an observer but is extremely painful and disabling for the sufferer.

Disability due to depression is again an invisible disability. The person loses interest in all activities and even simple tasks needs considerable effort. Chronic depression is relatively rare compared to chronic Schizophrenia.

Official recognition of disability due to chronic mental illness is slowly growing. After considerable lobbying by NGOs, psychiatrists and families of mentally ill, disability due to mental illness was included in the "Persons with Disability Act" passed by the Parliament in 1995. The objections raised by policy makers before 1995 were that, one, mental illness was transient. But some conditions are not transient. The second objection was about measuring and quantifying psychiatric disability, as disability benefits are given for those with a disability of 40 per cent or above.

This was a genuine lacuna that was rectified later. Dr. Thara, on behalf of the Indian Psychiatric Society, evolved an assessment tool called Indian Disability Evaluation and Assessment Scale (IDEAS). This has been field tested in eight centres in India and found to be valid. The Ministry of Social Justice and Empowerment, Government of India gazetted it in 2002.

But in practice, disability benefits are still elusive for persons with chronic mental illness. Official neglect is evident in the omission of a representative for the mentally ill in the recently constituted Disabilities Commission. The only benefit so far has been the transfer of family pension for the disabled. There is still no system in place to provide travel concession, which would make it easier to reach their rehabilitation centre or hospital. All they need is empathy and support to rebuild their lives in dignity. It is high time the government started trying to implement what was envisaged in the Persons with Disability Act, 1995.

The writer is a consultant psychiatrist.  

  Family and the care of the chronically ill : 

In the 1960s a programme was stared in the USA and subsequently in other western countries to treat mentally ill patients outside mental hospitals.  This programme was started, not because there was a shortage of mental hospitals but because of the new knowledge, which showed that long-term hospital stays could lead to chronicity.  The programme involved the setting up of half-way homes, hostels and, most importantly, the treatment of patients in their own family settings through follow up visits by nurses and social workers.  It was soon discovered that even rich western nations did not have sufficient funds to run the half-way homes and the domiciliary services.  Above all, the family was just not willing to keep the patient.  The result was that the patients were coming back to the hospitals through a kind of revolving door situation and if the re-admission policy was strict, they became homeless and roamed the streets.  As recently as 1985, I saw disturbed psychiatric patients walking about in parks around Harvard University. I also read reports of patients who were violent on the streets and some who died of exposure.  My first reaction was self-congratulatory.  " Are we not so much better off in India where the family is willing to look after its own?"  This reaction was short-lived because I soon discovered that a western family was not so much unwilling, as unable to do the caring.  With the nuclear family being the norm, all able bodied people going to work and children going to school, who would look after the patients during the day or even at night, following a hard day.

Family care in India :

The tide is turning in India as well.  There is an increasing migration to the cities, a gradual diminution of family size and fewer people available to stay at home to look after patients.  Is it likely, even in India, that people will continue to look after the mentally sick when other pressures increase?  The process of social change is going to become faster with the new economic philosophy.  I am afraid that family support is not going to be as easily available in the future and if the community is interested in the welfare of the mentally ill, it will have to think of other means.

The writing is already on the wall.  Wherever half-way homes for the chronic mental patients are available, they are running full and have long waiting lists.  This, in spite of the fact that most places charge amounts which are more than the annual incomes of average Indian families.  As I worry about this, I am appalled that almost all the mental hospitals of the country are vying with each other to give up their asylum function; the shorter the stay of the patient in the hospital, the more modern and scientific they are supposed to be.  The space and services, which were reserved for chronic patients in the old fashioned hospitals, are dwindling away rapidly.

Just as 20 years ago, when we started innovative programmes for the treatment of the mentally ill, we must now start developing innovative programmes for the care of the chronic mentally ill patients.  Before accelerating social change forces the family to deposit its chronic patient on the road, we must start planning for a roof over his or her head and arrange food, clothing and some recreation, to put some meaning into his life.  This is too big a task to be left to the private sector.  In spite of all the effort in the last 10 years, there are only about 250 places for chronic mental patients in private establishments.  The funds required for even the minimal care of non-productive chronic mental patients are massive.  The government will have to shoulder the responsibility and the planning process should start immediately.  It is in this context that the giving up of the asylum function by the mental hospitals, which possess a lot of space as well as a fair number of nursing aides, seems so irresponsible.

  The Impact of Mental Illness on Society

"...the burden of psychiatric conditions has been heavily underestimated..."

The burden of mental illness on health and productivity in the United States and throughout the world has long been underestimated. Data developed by the massive Global Burden of Disease study1 conducted by the World Health Organization, the World Bank, and Harvard University, reveal that mental illness, including suicide, accounts for over 15% of the burden of disease in established market economies, such as the United States. This is more than the disease burden caused by all cancers.

This Global Burden of Disease study developed a single measure to allow comparison of the burden of disease across many different disease conditions by including both death and disability. This measure was called Disability Adjusted Life Years (DALYs). DALYs measure lost years of healthy life regardless of whether the years were lost to premature death or disability. The disability component of this measure is weighted for severity of the disability. For example, disability caused by major depression was found to be equivalent to blindness or paraplegia whereas active psychosis seen in schizophrenia produces disability equal to quadriplegia.

Using the DALYs measure, major depression ranked second only to ischemic heart disease in magnitude of disease burden in established market economies. Schizophrenia, bipolar disorder, obsessive-compulsive disorder, panic disorder, and post-traumatic stress disorder also contributed significantly to the total burden of illness attributable to mental disorders.

The projections show that with the aging of the world population and the conquest of infectious diseases, psychiatric and neurological conditions could increase their share of the total global disease burden by almost half, from 10.5 percent of the total burden to almost 15 percent in 2020.

Facts

  • Depression is the leading cause of disability worldwide among persons age five and older.

  • For women throughout the world as well as those in established market economies, depression is the leading cause of DALYs. In established market economies, schizophrenia and bipolar disorder are also among the top ten causes of DALYs for women.

The Leading Sources of Disease Burden in Established Market Economies, 1990

(measured in DALYs*)

 

 

Total
(millions)

Percent
of Total

 

All Causes

98.7

 

1.

Ischemic heart disease

8.9

9.0

2.

Unipolar major depression

6.7

6.8

3.

Cardiovascular disease

5.0

5.0

4.

Alcohol use

4.7

4.7

5.

Road traffic accidents

4.3

4.4

6.

Lung & UR cancers

3.0

3.0

7.

Dementia & degenerative CNS

2.9

2.9

8.

Osteoarthritis

2.7

2.7

9.

Diabetes

2.4

2.4

10.

COPD

2.3

2.3

Disease Burden by Selected Illness Categories in Established Market Economies, 1990,

(measured in DALYs*)

 

Percent
of Total

All cardiovascular conditions

18.6

All mental illness including suicide

15.4

All malignant disease (cancer)

15.0

All respiratory conditions

4.8

All alcohol use

4.7

All infectious and parasitic disease

2.8

All drug use

1.5

Mental Illness as a Source of Disease Burden in Established Market Economies, 1990,

(measured in DALYs*)

 

Total
(millions)

Percent
of Total

All Causes

98.7

 

Unipolar major depression

6.7

6.8

Schizophrenia

2.3

2.3

Bipolar disorder

1.7

1.7

Obsessive-compulsive disorder

1.5

1.5

Panic disorder

0.7

0.7

Post-traumatic stress disorder

0.3

0.3

Self-inflicted injuries (suicide)

2.2

2.2

All mental disorders

15.3

15.4

*DALYs measure lost years of healthy life regardless of whether the years were lost to premature death or disability. NIH Publication No. 99-4586. Reprinted by permission.
 

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