Families impacted by serious mental illness in India are vulnerable...

...to indifference, harassment, harshness, predators, easy targets for very rude patronising behavior… Unsolicited advice is available in plenty, concrete support little. 

To preserve the person hood of a family member with serious mental illness is critical. It comes with the knowledge of knowing the person. It cannot be taught.


Giving care on a daily basis to a family member with serious mental illness takes most of a 24 hour day. The quantum of provision of care varies. Periods of intense supportive care are needed to be provided during psychosis, life threatening self-neglect, attempts at suicide …which are acute emergencies till a period of stability is reached.

Most people in India, even the educated and the aware, do not have easy access to inpatient beds in hospitals so crisis is managed at home with OPD visits to a psychiatrist the frequency of which increase during a crisis and relapse.

If one is fortunate to have sufficient financial resources, making appointments, visits to a dentist and other medical practitioners are helpful as a loved one grows older with a serious mental illness.

Medication management, easing the side effects, has to be ensured sensitively which is not easy with a lot of prowling predators discouraging treatments and offering all sorts of cures. The absence of IEC (Information Communication Education) campaigns which was one of the objectives of the National Mental Health Programme launched in India decades ago has been very favourable for *the growth of these predators*.

When a family has more than one family member with mental illness in India, to sustain the daily living activities without helpful support is very difficult. Tragedy follows and left behind is just the...remains. 

It happened recently with a family in Thiruvananthapuram in Kerala.

A print media report is given below
28 May 2015:
When Prasannakumaran paid scant heed to policemen who advised him to take his mentally ill son to a doctor, little did he know that the boy's actions would claim his wife's life. In a tragic incident, a 48-year-old woman died at Alamcode near Attingal, allegedly after her teenage son bludgeoned her using a traditional lamp (nila vilakku) in the early hours of Wednesday. Police identified the deceased as Ushakumari of Pallimukku near Alamcode under Attingal police station. Police have arrested her 19-year-old son, Akhil alias Vishnu, in connection with the incident. The murder took place when his father Prasannakumaran and sister Aparna were sleeping over at relative's house nearby.

Attingal circle inspector M Anil Kumar said Vishnu, who had been mentally unstable for the past three years, had been in a violent mood since Tuesday morning and the tragedy could have been averted had the family taken him to a hospital. "Yesterday morning, he stabbed his father's hand using a knife in a violent fit of rage," Anil Kumar said. In the evening, he went to Alamcode Junction and created a ruckus, following which local residents summoned the police. Cops arrived on the spot and took him into custody. When his relatives approached police and sought his release, the cops advised them to take him to a hospital, but in vain. Above all, the family left Ushakumari who was also under treatment for mental illness with her violent son in the house.

"After he was stabbed in the morning, Prasannakumaran did not have the courage to return home. He also asked his 22-year-old daughter Aparna to accompany him to the relative's house," the inspector said. On Wednesday morning, Prasannakumaran visited the hospital to tend to his injury and then returned to his house. Upon reaching home, he saw Vishnu sitting in front of the house, his body drenched in blood. Terrified, he summoned a few local residents and entered the house through the back door to find his wife lying in a pool of blood in the living room. The room had blood all over, including on the walls and ceiling. "It is suspected that the boy may have struck her down with the lamp and then clubbed her repeatedly on the head, causing the blood to spray out," police said.

The accused was produced before court and remanded in judicial custody. The magistrate has forwarded a letter to the Attingal sub-jail superintendent to subject the accused to a medical test to ascertain whether he was indeed mentally ill as claimed by the family. A copy of the letter has been forwarded to the district medical officer too. Vishnu, had dropped his studies after Class X owing to his mental illness. He often turned violent when he was denied money to eat food from outside. Prasannakumaran is a former NRI, who is currently into real estate business. Ushakumari was a homemaker.

Responses: 
1. A mother with mental illness who needed to be given supportive care died and her son with mental illness who should have been taken for emergency treatment has entered the criminal justice system.

2. Where is the assistance offered to the smallest social unit in society when a family member has mental illness? 

3. Where is the protection offered to the smallest social unit in society when a family member has mental illness? 

4. India has ratified many treaties which clearly state that assistance and protection should be given to preserve the family the smallest social unit in society which is not happening. 

5. 'The Kerala Joint Hindu Family System (Abolition) Act, 1975 has already stripped many families of the traditional rights, support, comfort and protection of Joint families.

References:
1. The UN Convention Rights of Persons with Disabilities
2. The International Covenant on Economic, Social and Cultural Rights
3. The Kerala Joint Hindu Family System (Abolition) Act, 1975
4. The Universal Declaration of Human Rights.
5.  The Hindu
6. The Times of India 

Using the terminology ‘special’ for people with disabilities in India

.....with no inclusion whatsoever of children women or men with mental illness in this ‘special group’.

1.‘Mental illness’ is the seventh disability in the existing Persons with Disability ACT 1995 which exhorts *Equal opportunities, Protection Rights. Full participation*

2.Media in its productions in India are extremely careful in the use of accurate terminology for the six disabilities in the Persons with Disabilities ACT 1995 and for the four disabilities in the wealthy National Trust for disabilities in India, which is governed by a separate law.

3.An example is the piece ‘Providing Insight to Autistic Children’ which appeared in ‘The New Indian Express’ on 3rd December 2014. A link of which is given below.
http://www.newindianexpress.com/cities/kochi/Providing-Insight-to-Autistic-Children/2014/12/03/article2552129.ece

4.Another piece with the word ‘special’ in its title appeared in the same newspaper on 05 September 2014 with the caption ‘Government Job Eludes 'Special' Employee’ going on to say the person was ‘mentally challenged’ and had participated in a certain Special Olympics Asia Pacific Regional Games 2013. The link is given below. 
http://www.newindianexpress.com/cities/thiruvananthapuram/Government-Job-Eludes-Special-Employee/2014/12/05/article2555423.ece

5.Careless blurring of the boundaries between people with mental retardation and people with mental illness is increasing in India, although both disabilities are defined separately in the existing Persons with Disabilities ACT 1995. It is important to point out that Persons with Mental Retardation are included in the wealthy ‘National Trust for disabilities’ covered by a separate law 

6.On the 2nd December 2014 an 8 year old girl died by suicide in Bengaluru by dousing herself with kerosene and lighting herself up. She left behind a suicide note saying that she loved her mother very much. Her mother is a factory worker. She was a student who had not been attending school for several days. Pictures of the school attendance register was shown on television. The related link is given below
http://www.ndtv.com/article/india/amma-i-love-you-wrote-bangalore-10-year-old-in-suicide-note-628900?curl=1418247209
 
7.In response to this suicide, in an interview in a television channel CNN-IBN on the night of 02 December 2014, a mental health professional from Bengaluru stated that, ‘such suicides were due to sexual assault, and parental pressure'. On what basis was such a callous statement made? The repercussion of the costs of not treating mental illness through early intervention is already huge.

8.The Press Information Bureau in the social media on 03 December 2014 tweeted that the Health Minister Honourable Shri J P Nadda, heading the Ministry of Health and Family Welfare of the Government of India had released a ‘Framework for Convergent Action for comprehensive care for children with special needs which is committed to prevention, early diagnosis and treatment of disorders in children with special abilities.' The text of which is given below followed by the link.

9.Health Minister Shri J P Nadda: Committed to prevention, early diagnosis and treatment of disorders in children with special abilities.
 
The Government is committed to prevention, early diagnosis and timely and appropriate treatment of disorders in children, including development disorders so that they enjoy good health and become valuable assets of the country.

The Union Minister for Health and Family Welfare, Shri J P Nadda stated this at the closing of the three day workshop on Neurodevelopment Disorder in Children organised by Ministry of Health & Family Welfare, pediatric department of AIIMS, with support from UNICEF and Norway India Partnership Initiative (NIPI) in health. Today also marks the International Day for Persons with Disabilities.

The Health Minister said that the government through its various efforts is addressing key developmental issues, including developmental delay, intellectual disability, cerebral palsy, Autism, Hyperactivity Disorder, learning disability, vision and hearing impairment. He added that an estimated over 200 million children in developing countries are not reaching their full developmental potential. In developed world 10-20% of individuals have learning or developmental difficulties. In India, estimates suggest that 10% children are affected with developmental delays and are at significant risk of permanent disabilities, Shri Nadda said.

The Health Minister emphasised on the importance of early detection for effective intervention in children with neurodevelopment disorders. He informed that Rashtriya Bal Swasthya Karyakram (RBSK) under National Health Mission (NHM) has comprehensively incorporated early diagnosis and intervention strategies for developmental disorders. The Minister stressed on the importance of collective efforts to provide accessibility to medical services and rehabilitation of persons with disabilities. He said that within the new policies, programs and strategies have been designed to empower children and persons with special needs with equal rights and opportunities in education and employment.

The Health Minister released the Framework for Convergent Action towards Comprehensive care of Children with Developmental Difficulties, at the occasion. This will serve as an indispensible guide to future action plans to be developed by policymakers within various ministries, the Minister said.

Shri J P Nadda also launched a mobile-based microsite for training module for healthcare practitioners.

Celebrating the International Day for Persons with Disabilities with a workshop on Neurodevelopment Disorder in Children renews and reinforces our commitment towards the cause of persons with disabilities and special needs, the Secretary (H&FW), Shri Lov Verma stated. He said that one in every ten children in the country suffer from some form of disability. The big challenges are timely and early diagnosis, and capacity building of frontline workers in early detection, he said. Early detection aids timely intervention. He also emphasised on planning for lifespan care for children with special needs.

Mr. Louis Georges Arsenault, Country Representative, UNICEF highlighted dignity, right and wellbeing of persons with special needs, and the need for creating an all-inclusive society for children to enable them to realise their potential which would include special schools for children with flexible curriculum, and qualified and sensitive teachers.

Ms. Nata Menabde, Country Representative, WHO stated that this issue is relevant to all sections of society irrespective of the socio-economic distinctions. She stressed on need for pro-poor policies and strategies for the marginalised communities and sections of society as they were the ones which bore the burden of disability the most. The need of the hour is integrated delivery of health services through community participation, she said.

Mr. Eivind Homme, Ambassador of Norway to India stated that within the NIPI, commendable initiatives have been taken for maternal and neo-natal health, particularly in states of Bihar, Madhya Pradesh, Odisha and Rajasthan. Early diagnosis and treatment of Neurodevelopment Disorder will reduce the cost on lengthy and expensive care, he said.

The three-day workshop aimed to sensitize the primary health care providers and health professionals dealing with children affected with neurodevelopment disorders. It intended to increase awareness on early identification and expose participants to available tools validated in Indian context for early diagnosis and management. The workshop also aimed to improve the quality of the life of children having neurodevelopmental disorders through convergent action. About 250-300 participants took part in the workshop. These included paediatricians working in the area of child development, RBSK nodal officers from various states and UTs, partner organizations such as WHO, UNICEF, NIPI, IAP, ICMR.

Neurodevelopmental disorder / difficulty is a collective term used for both developmental delays and developmental disabilities. Development delay is the condition in which a child is not achieving skills according to the expected time frame. Developmental Disability refers to a condition where a child becomes mentally or physically impaired and finally resulting in substantial functional limitations in major life activities. Developmental delays are common in early childhood, affecting at least 10 percent of children. However 2% of these children may ultimately suffer from developmental disability despite best of efforts.

Neurodevelopmental disorders include intellectual disabilities, autism spectrum disorder, Attention Deficit Hyperactivity Disorder, Specific Learning Disorder and Communication Disorders. Motor disorders include cerebral palsy and other neuromuscular conditions. Other special sensory disorders include vision and hearing impairment.
***** 
 MV
(Release ID :112450)
http://pib.nic.in/newsite/erelease.aspx?relid=112450

Some Observations:
1. The Ministry of Health and Family Welfare uses the terminology 'intellectual disability' which appears to be an *import* as it does not figure in the existing Persons with Disabilities ACT 1995. 

2. It is a shame that we are importing such terminologies from some countries which have not signed or ratified the UN Convention Rights of Persons with disabilities.

3. The sensitive needs of children with serious mental illnesses have been ignored. Shouldn’t teachers be trained, clinicians sensitized and parents be educated to spot the warning signs of depression, for early intervention before a crisis erupts. Children with serious mental illnesses have a right to treatments, supportive care in order to pursue their education as much as children with other disabilities and be valuable assets.

4. That children with serious mental illness are not even mentioned is to pretend that they do not exist which is cruel. Not to include these children in the announced ‘Rashtriya Bal Swasthya Karyakram’ is reprehensible.

5. People with mental illness are very *special* to their families. That does not mean that they be over looked. The health care of those with Mental illness, the seventh disability in the Persons with Disabilities Act 1995 is as it is grossly neglected.

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