The *Knowledge deficits* in The Rights of Persons Disabilities Bill 2014 India- Part One

1. Where did all the *knowledge inputs* given in the process of making this Bill go?

2. In the trash can?

3. Or *knowledge* transfers to where and whom?

4. Free * Knowledge* transfers to the learned people with academic degrees to write their reports, books, studies, thesis, newspaper columns … without acknowledging their contributors? No *shared benefits* to so many who gave their *knowledge inputs* which have been kept out of this Bill.

5. This Bill refuses to acknowledge the years of neglect following the Census of India, 2001 which clubbed persons with mental illness together with persons with mental retardation >with all the benefits of rehabilitation showered on persons with mental retardation by the Ministry of Social Justice and Empowerment.

6. This Bill refuses to acknowledge that the rehabilitation of those with serious mental illness in India was left to the impacted families and few organizations.

7. This bill refuses to acknowledge that Mental illness was counted separately in the last Census of India 2011 and not clubbed together with any disability.

Response to: Piecemeal Employment of mental illness in the Rights of Persons Disabilities Bill 2014 India, Ministry of Social Justice and Empowerment which is with the Standing Committee in the Parliament of India

When there is no information no support no mental health care services

... families do not know what to do.
Most of the families in India do not have accurate information about serious mental illness, so when it begins insidiously there is fear. Most do not know what to do. There are extensive public health campaigns and health services by the Government of India for Cancer, HIV/AIDS and Tuberculosis which have helped people. Not so for Mental illness. So families do what they can with very little in these difficult times. Like a family living in Chandigarh, North India did. Most reports of such kind are referred to as ‘bizarre’ 

A newspaper report which came recently -
 
‘Mentally ill mom, children rescued’ –
Indian Express dated -24 April 2014

“In a bizarre incident, three unattended, mentally ill members of a family were found living in a house in Phase 9 where they had locked themselves for several years. They were brought to the civil hospital by the police, the District Legal Services Authority (DLSA) and an NGO on Wednesday.

Preliminary findings by the police and doctors suggest that the three, a woman and her grown-up son and daughter, had not come out of their house for around six years and were being provided food by the woman’s husband, an old and sick person himself, who was living away due to fear of being attacked by them.

The three has been identified as Jaswant Kaur, who appeared to be in her late 50s, her son Inderdeep Singh, and daughter Amandeep Kaur, both in their late 20s. All three looked weak and much older for their age.

“Preliminary diagnosis suggests that at least two of them have a serious mental disorder. The mother is comparatively more stable. They will probably be referred to the Institute of Mental Health in Amritsar,” said Dr Harinder Singh, the psychiatrist who spoke to them. Their plight was reported by two Chandigarh-based human rights activists to Prabh Aasra, an organisation working for the homeless.

The NGO, in turn, informed Mohali CJM Tarntaran Singh Bindra, who heads the DLSA. Bindra approached the police and they went to the family’s house around 6 pm.

“When we entered the house and knocked at the door, it was opened instantly as the three of them probably thought it was a call for food. When we told them that we did not have any food, they got aggressive and told us to leave. We then took them to the hospital on the pretext of making them meet their father (woman’s husband). They are all in a bad shape, wearing winter clothes and having overgrown hair,” police said.

Jaswant and her children were then taken to a hospital in Phase 6, where Mohali Additional District and Sessions Judge P P Singh also paid a visit. They demanded to see Jaswant’s husband J S Baidwan, who was traced by Prabh Aasra and the DLSA in Chandigarh, were he was staying in an ashram.

“The husband is mentally stable, but very feeble. He alleged that he was attacked by the children whenever he went to the house, so he moved out. But he ensured that the family was provided food, so he hired a local eatery owner to deliver them food regularly. He has been taken to the hospital, and has been kept separately. Lately, it seems he had become too feeble and sick to cater to their needs,” said Bindra.

Prabh Aasra member Karam Singh said that they were surprised that the neighbours never informed any authority about their existence. Jaswant Kaur claimed that her husband was a retired Superintending Engineer.
 
Link -http://indianexpress.com/article/cities/chandigarh/mentally-ill-mom-children-rescued/

Research In India -Serious Mental Illness-

...a commonsense care setting.


‘People selected on the basis of high motivation can work wonders can be seen from the excellent study carried out by Chatterjee S, Patel V, Chatterjee A, Weiss HA. The study used a three-tier model for the delivery of mental health services. The first tier was for the out-patient programme. The second tier employed mental health workers drawn from the local community. The third tier consisted of family members. The shared cultural idiom prompted greater adherence to treatment which was much higher compared to another group which used only out -patient services. This particular experiment can become a model not only for the treatment for mental disorders but also for primary healthcare in general.’ –stated - The story of Community Health in India, The National Mental Health Programme, Ministry of Health and Family Welfare. Government of India.
 
This study was deemed as a model study of community-based rehabilitation for chronic schizophrenia in rural India referred to as -‘The Barwani Experiment’ which was inclusive of ‘family caregivers’.

This study was also published in the British Journal of Psychiatry 2003 entitled –‘Evaluation of a community-based rehabilitation model for chronic schizophrenia in rural India.’
 
Some Observations:
1. The 'family caregivers' in India continue to play a key and crucial role in the care giving process of their family members with serious mental illness. This was  exemplified in the research study in Barwani in rural India. Yet 'family caregivers' are strangely missing from the Mental Health Care Bill.

2. But then the Mental Health Care Bill pending before parliament in India has ‘establishments’ which are purportedly  the community care centres.

References:

1. The story of Community Health in India, The National Mental Health Programme, Ministry of Health and Family Welfare. Government of India

2. The Mental Health Care Bill, as tabled in the Rajya Sabha in 2013

PUBLIC HEALTH AWARENESS CAMPAIGNS MENTAL HEALTH, HUMAN RIGHTS - Government of India

"There is a need for Public Mental Health Education and awareness campaigns on Mental Health to be launched. The main goal is to reduce barriers to treatment and care by increasing awareness of the frequency of mental disorders, their treatability the recovery process and the human rights of people with mental disorders."

‘National Mental Health Programme Progress and Problems’ -2003, Ministry of Health and Family Welfare.Government of India

"SERIOUS MENTAL ILLNESS" NOT EVEN DEFINED in the Mental Health Care Bill 2013

When -> The National Commission on Macroeconomics and Health, Ministry of Health & Family Welfare, Government of India, New Delhi in August 2005 states, ‘there are 65 million Indians with serious mental illnesses like Schizophrenia, Bipolar disorder, Major depression…’
 
When-> Mental health An Indian perspective 1946-2003’ by the Directorate General Health Services, Ministry of Health and Family Welfare states that –‘It is suggested that the community health programme should divert a significant part of their funds to the care of the chronically ill because ultimately it is the State which has a moral duty to look after the weak and dependent population.’

When->The World Health Organization (WHO) states, ‘Schizophrenia: Youth’s greatest disabler’. 

When->India is demographically a youthful country. 

When-> Mental health An Indian perspective 1946-2003’ by the Directorate General Health Services, Ministry of Health and Family Welfare states that –‘Although the prevalence of chronic psychotic illnesses such as Schizophrenia and Bipolar disorder in women may be less than that of Depression, Anxiety they pose an immense problem in management and rehabilitation.’ 

When-> To be in consonance with the UN Convention Rights Persons with Disabilities which has stated-‘Recognizing further the diversity of persons with disabilities’
‘Recognizing the need to promote and protect the human rights of all persons with disabilities including those who require more intensive support.’
 
Yet -‘SERIOUS MENTAL ILLNESS’ - Schizophrenia, Bipolar Disorder, Major Depression – NOT EVEN DEFINED in the Mental Health Care Bill 2013 

A community-based rehabilitation model - the Barwani study in rural India

comprising of family members of loved ones with a serious mental illness, chronic schizophrenia

Due to lack of opportunities in the rural areas in India many families are left behind when the heads of the household leave their families in the villages seeking employment in distant towns. When a family member has a serious mental illness the 'family caregiver' takes on the responsibility in keeping the rest of the family together whilst giving care. With serious mental illness it is like a cyclone hitting the family. 

Mothers, fathers, brothers, sisters, grandparents; even children give care to their family members with mental illness in the harshest conditions. These 'family caregivers' are invisible for they are never written about- who knit the social fabric of the family, giving care, support and protection for their loved ones with mental illness.

'The Barwani Experiment’ using a three tier model for the delivery of mental health services had the third tier comprising of family members can become a model not only for the treatment of mental disorders but also for primary healthcare in general state.'- Evaluation of a community-based model in rural India

'Family caregivers' who  have the knowledge and experience in giving care have not even been defined in the Mental Health Care Bill, Bill No. LIV of 2013 as introduced in the Rajya Sabha.

References:

1.National Mental Health Programme. Ministry of Health and Family Welfare. Government of India.

2.As Introduced in the Rajya Sabha Bill No. LIV of 2013-The Mental Health Care Bill