Great things are not done by impulse, but by a series of small things brought together – Vincent Van Gogh

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Eyes on the future

Eyes on the future

IN PERSPECTIVE

The Government should address low vision problems in children.

It is widely believed that there are over 120 million people worldwide with Low Vision (LV), a condition that cannot be corrected, cured or treated by conventional medicine or surgery. Over 90 per cent of these people with LV live in developing countries.

According to the National Association for the Blind (NAB), this figure could be as high as 45 million children and adults in India. Approximately 50 per cent of all childhood blindness is preventable or treatable, unfortunately less than 15 per cent of those with a visual impairment have access to vision enhancement or rehabilitation services that could help change their lives! Despite the magnitude of the problem, LV is still sadly no where near the top of the agenda, for governments either at the state or national level.

Govt complacency

More than a decade on, the government has done little more than list LV as one of the seven disabilities in The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. Most of those with LV, despite having usable vision continue to be packed off to schools for the blind or neglected in the general school system simply because they don’t have access to or cannot afford vision enhancement or rehabilitation that could help them to integrate into regular schools.

A survey done among ophthalmologists in 2005, listed some of the barriers to effective treatment of LV in India.

It was found that an overwhelming majority of ophthalmologists lacked training and knowledge of LV, while others lacked awareness, a sizeable percentage cited non-availability of LV devices for effective treatment. On the other hand, it is important to remember that ophthalmologist can only provide medical intervention; while social and economic rehabilitation needs to be planned for and addressed by the government.

It is extremely important that LV during childhood should be addressed seriously because it has a tremendous impact on the child’s development, education, future work opportunities and quality of life. The disability has serious social and economic implications for the family and the negative effects experienced by the child will influence the child’s life and beyond.

Since nearly 50 per cent of LV and visual impairment is preventable, it is important to focus on the causes of LV, one of which is Vitamin A deficiency, which results in corneal scarring and thus visual impairment. Vitamin A deficiency gains special significance due to the high levels of malnutrition in the country. Economically backward states are known to have higher rates of LV due to malnutrition; other causes of LV include diseases that the mother may have during pregnancy eg Rubella and genetic causes.

Implement SSA

However, NGOs can do only very little and it should largely be the responsibility of the government to take steps adequate to the scale of the problem and size of the country.

The need of the hour is to implement the Sarva Shiksha Abhayan (SSA) so as to benefit children with LV. Launched in 2001-02, the SSA seeks to provide inclusive education for all with a zero rejection policy and strives for 100 per cent retention of all children in school. However, it has been largely found that children with LV are passive attendees in class, having not been provided text books with large print, magnifiers or assistive devices like spectacles; they are thus unable to reap the fruit of a formal education.

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, needs to go beyond paper and be implemented to bring concrete social and economic rehabilitation in the lives of those with LV.

The government must provide for the medical rehabilitation of those with LV, for if left untreated, LV can degenerate into a progressive loss of vision and only adds to the already large figure of totally visually impaired individuals in the country, thus further putting pressure on already scare welfare.

(The writer is a member of DisAbilityFirst, an advocacy group working on issues of disability)

(The above article appeared on the 23rd of May 2008 in the Bangalore Edition of the Deccan Herald, http://www.deccanherald.com/Content/May232008/editpage2008052269454.asp)

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Developmental Disabilities

Developmental Disabilities

IN PERSPECTIVE

For a long while, it was believed that people with DD were incapable of learning.

Commonly known as mental retardation, Developmental Disabilities (DD) is a term used for a pattern of persistently slow learning of basic motor and language skills during childhood and significantly below-normal intellectual ability as an adult. One common criterion for the diagnosis of DD is a tested intelligence quotient of 70 or below and deficits in adaptive functioning.

DD is diagnosed by looking at two main aspects: the ability of a person’s brain to learn, think, solve problems and make sense of the world; and a person’s ability to develop skills that allow for independent living. Some of the common signs that help identify DD in a child are delay in sitting, crawling or walking and delayed speech. As the child grows older DD manifests itself as difficulty in remembering, trouble understanding social rules, trouble seeing the consequences of their action, trouble solving problems, thinking logically and persistence of infantile behaviour.

The causes of DD could be anywhere from genetic conditions like Down Syndrome, Fragile X Syndrome, Mowat-Wilson Syndrome, or Phenylketonuria to problems during pregnancy such as fetal alcohol syndrome or the mother having rubella. DD can also be caused due to problems at birth — if the baby does not get enough oxygen during birth, or the improper use of forceps which fractures the skull and causes brain damage.

Malnutrition

Health problems like the new born developing whooping cough, measles or meningitis can also result in DD, so can iodine deficiency, which affects approximately two billion people worldwide and is known to be the leading preventable cause of DD. Another cause of DD and of deep concern in a country like India is malnutrition. The National Nutrition Monitoring Bureau’s figures for 2006-07 show a deficit of over 500 calories in the intake of 1-3 year olds and 700 calories amongst 3-6 year olds.

For a long while, it was believed that people with DD were incapable of learning and were therefore largely ignored and left to themselves, with little or no social interaction and an un-stimulating environment. Thankfully, today we know better. When responding to people with DD it is necessary to remember that every person is born with some amount of potential and early intervention is most important so as to bring out the full potential of the child. With support and teaching, children with DD can learn to do many things. People with DD learn throughout their lives and can obtain new skills even late in life with help from their families and caregivers.

Even though training children with DD can be quiet a challenge, the government has taken a positive step towards mainstreaming those with DD into the education system, through the launch of the Sarva Shiksha Abhayan. SSA promises inclusive education for all with a zero rejection policy and strives for 100 per cent retention in schools. Even though teachers have much to learn about dealing with children with DD, incorporating a few changes can go a long way in making a child independent and confident.

Intervention

Teachers need to develop an understanding of DD to facilitate effective intervention and realise that they have the power to make an enormous difference in the student’s life. Teachers need to teach life skills such as daily living, social skills and occupation awareness. Involve students with DD in group activities and get other students to interact with them. Break longer, new tasks into small steps and demonstrate them when necessary. Besides providing immediate feedback, teachers must constantly encourage and praise the child.

An equally invaluable resource to the child is the parents and family. Meeting parents frequently to acquaint them with the child’s progress means that the child can be involving into meaningful activity — both at school and home. In the long run, this removes over dependence on parents and caregiver.

(The writer is a member of DisAbilityFirst, an advocacy group working on issues of disability)

The above article appeared in the Bangalore edition of the Deccan Herald on 16th April 2008 and can also be viewed at http://www.deccanherald.com/Content/Apr162008/editpage2008041562848.asp

Mental Illness as Disability

Mental Illness as Disability

IN PERSPECTIVE

The issue of mental illness needs to be brought to the centre stage.

Worldwide, there are believed to be around 450 million people suffering from mental or behavioural disorders. 14 per cent of all global disease burden is attributed to mental disorders. There is one psychiatrist for 10,000 people in high income countries and one for 2 million people in low income countries.

In India, there are considered to be just 4,000 psychiatrists for the whole country. According to the National Human Rights Report 2000, 20 to 30 million people “appear to need some form of mental health care” and according to the National Commission for Women, five million of these are women. Yet, mental health, either in the form of health policies or budgetary allocations, are no where on the radar of government

Woefully inadequate

When one looks at The Persons with Disabilities (Equal Opportunities, Protection Of Rights and Full Participation) Act, 1995, which does little more than list mental illness as one of the seven disabilities in its definition and The Mental Health Act 1987 (which came into force in 1993) one will realize that they are woefully inadequate with numerous lacunae.

According to The Mental Health Act 1987, a person with mental illness is defined as “a person who is in need of treatment for any mental disorder other than mental retardation”.

The law is silent about emergency care. Any person with a mental illness picked up by the police first needs a reception order from the Judicial Magistrate before being admitted to an institution. According to the Act, there should be one psychiatrist for every ten mentally ill patients and a cured patient cannot be discharged from a hospital except to a guardian.

Thus, patients who have long since been cured continue to languish in mental institutions as family members refuse to accept them back. Many who work with the mentally ill say the Act is biased towards people with mental illness and it speaks little on rehabilitation and post care treatment. What is noticeable is that even while mental stress continues to increase, pushing growing numbers of people like women and youth to the brink of insanity, our mental health institutions continue to remain like virtual jails, austere steel cages where people are not encouraged to socialize and lead normal lives.

The treatment, of the mentally ill is largely medical and does not address the root causes that led to the onset of the illness. Rehabilitation facilities continue to be concentrated in urban areas and the majority of the rural poor resort to quacks and local healers in search of a treatment.

Marginalized issue

Mental illness itself is a highly marginalized issue among the general disability debate even the National Policy for Persons with Disability 2006 makes nothing more than a passing mention of mental illness in some of its sections.
Thus, the issue of mental illness needs to be brought to the centre stage, focused upon and mainstreamed into the general disability debate. The stigma around mental illness also needs to be addressed through a wide spread media campaign that helps people identify mental illness and treat it early.

Children in schools and people in their work place need to be taught to address their mental stress in healthy ways through the presence of psychologist and counselors. Governments need to make appropriate and adequate budgetary allocations to address the growing problem of mental illness.

Many people with a mental illness require medication for the rest of their lives and this medication needs to be provided free of cost for people who are living below the poverty line. There is a need for half way homes where people who have recovered from mental illness can be rehabilitated by learning a vocational skill and from where they can be integrated into their families. These homes will also offer shelter to those not accepted back by their families.

There is also a need for more mental health institutions and with all probability these should be in the form of additional wings in the district hospital rather than segregated hospitals that further stigmatization.

(The author is a founding member of disAbilityFirst, a disability group working on advocacy issues.)

The above article was published in the Bangalore Edition of Deccan Herald on 24th December 2007

http://www.deccanherald.com/Content/Dec242007/editpage2007122342811.asp

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