The MINDS Foundation - Eliminating Stigma Surrounding Mental Illness in India

The MINDS Foundation - Eliminating Stigma Surrounding Mental Illness in India

India
Organization type: 
nonprofit/ngo/citizen sector
Budget: 
$10,000 - $50,000
Project Summary
Elevator Pitch

Concise Summary: Help us pitch this solution! Provide an explanation within 3-4 short sentences.

The MINDS Foundation aims to eradicate stigma surrounding mental illness through educational, medical, financial, and moral support. Mental illness should be globally recognized as a biological disease, rather than a personal weakness. We want people with mental illness and their loved ones to seek help rather than hide. We emphasize education about mental health care in rural communities and provide access to resources for patients and families. We establish collaborative partnerships with local community-orientated institutions and provide educational and diagnostic support as part of a grassroots effort to improve the lives of the mentally ill in regions of need.
About Project

Solution: What is the proposed solution? Please be specific!

At MINDS, we believe that treating mental illness must start with a strong foundation of community education. The stigma associated with mental illness in India is particularly debilitating. Rural communities in particular must understand that mental illness is a medical issue, not the result of immorality or demonic possession, before it can be effectively diagnosed and treated. With ongoing local education, we hope to maximize the effectiveness of screening camps and treatment. In addition, we aim to collaborate with local institutions to avoid infrastructural and administrative costs by integrating a mental health component into rural primary health care clinics. All social workers and psychiatrists will be hired from the area in order to establish trust between MINDS and the target community. We are determined to minimize any costs not directly benefitting the population. Unlike, other existing NGOs we do not spend funding on trying to influence legislation that never visibly 'trickles' down to affect the lives of the rural population that we are addressing.
Impact: How does it Work

Example: Walk us through a specific example(s) of how this solution makes a difference; include its primary activities.

Our current project prioritizes community education about mental illness in India so that it will be properly recognized as a medical condition. Many, especially in rural areas, believe that mental illness is a reflection of an immoral soul, demonic possession, or a punishment to a shamed family. The illness is often hidden or denied. In severe cases, the mentally ill are disowned and cast out onto the streets, beaten and abused, shackled, and even killed. These outcomes, stemming from ignorance, fear, and prejudice, are unacceptable. Accordingly, the first phase of our project (which has already been implemented) aims to educate communities and encourage acceptance of mental illness as a foundation for future work. MINDS volunteer ambassadors recently returned from Gujarat, India. Along with our volunteer staff of mental health professionals based out of the Sumandeep Vidyapeeth University in Vadodara, Gujarat and one social worker employed by MINDS, these ambassadors educated the local rural citizens about symptoms, causes, treatments, and prognosis of mental illness. Our social worker and local volunteers will continue to organize educational seminars and administer surveys in additional areas throughout the year to reach our target of thirty villages. The centerpiece of our seminars is an informational video filmed in partnership with the university and local actors. The video exposes the community to various mental illnesses and how to detect them and where to access the proper resources needed for treatment. The choice of educational medium derives from the centrality of audio-visual entertainment to Indian culture (India produces more films per year than Hollywood). We augment our video with visual aid booklets and by posting artwork depicting mental illness around the village. Disseminating our materials in such a way circumvents issues with low literacy rates and achieves maximum educational impact. The next two phases build on our educational foundation and focus on identifying disorders (consultation) and offering proper treatment. India, a nation of 1.08 billion people, has only 3,500 psychiatrists, almost all practicing in major cities. In the second phase starting December 2011, volunteers will work with local social workers and medical students/professionals to host free screening camps twice a month in all thirty villages. Patients showing indications of a mental illness will be referred to a clinical psychologist or psychiatrist volunteering at a local health center. With this we enter the third phase of our program, treatment. We will provide free transportation to our local community clinic for ongoing treatment by our mental health professionals. Our psychiatrist will visit the clinic twice a month and our psychologist will visit the clinic twice a week for individual counseling sessions. Personalized treatment regimens will be subsidized for patients in the early stages of psychosis, when research shows they are most susceptible. The fourth and final phase will sustain the changes made and foster growth within the community, continuing the cycle of awareness, consultation, treatment, and reintegration. With our approach, patients who have successfully been treated through our program become essential the program’s future. They will aid in our awareness campaigns and help host open discussions and workshops within their own communities. These citizens will act as an inspiration and provide help for future patients who are in need of medical and moral support. To help us achieve this goal, we are currently working with Indian and American psychiatrists to develop an entirely novel psychosocial rehab program. Imposing Western-style therapies on a foreign culture is a highly ineffective method of treatment; mental illness is extremely culture-dependent so we will customize a reintegration plan that embraces Indian culture. We started phase one in July 2011, and it is currently approaching its target of 30 villages. Phase two begins December 2011 and will last for one year, with screening camps in every village once every two months. Phase three will start in February 2012 and will run concurrently with phase four. Thus, the MINDS program will facilitate beneficial changes at multiple levels: the individual, the family, and the community, ultimately providing the society with a self-sustaining program to treat mental illness.
About You
Organization:
The MINDS Foundation
About You
First Name

Raghu

Last Name

Appasani

About Your Organization
Organization Name

The MINDS Foundation

Organization Phone

7812668211

Organization Address

231 Pine Hill Circle, Waltham

Organization Country

, MA, Middlesex County

Country where this project is creating social impact

, GJ

How long has your organization been operating?

1‐5 years

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Innovation
What stage is your project in?

Operating for less than a year

Tell us about the community that you engage? eg. economic conditions, political structures, norms and values, demographic trends, history, and experience with engagement efforts.

<strong>General and Economic Information</strong>

Over 1.08 billion people reside in India, of which 32% are under the age of 15 and 8% are above the age of 60. Literacy rates are varying among sexes, with 68.4% of men and 45.4 % of women literate. According to a 2005 World Bank estimate, 41.6% of the total Indian population falls below the international poverty line of US $ 1.25 a day. There is a surplus of labor in agriculture, which in part contributes to the current lack of mental health facilities, as farmers are a large vote bank and use their votes to resist reallocation of land for higher-income industrial projects. In one estimate, over 85 per cent of rural households are landless, sub-marginal, marginal or small farmers; however, farm incomes have reportedly collapsed and public investment in agriculture has shrunk. While services and industry have grown at double digit figures, agriculture growth rate has dropped from 4.8% to 2%. About 60% of the population depends on agriculture whereas the contribution of agriculture to the GDP is about 18%. The percentage of India's GDP that is spent for charitable purposes is only 0.6 where the percentage is 2.2 in the United States.

<strong>Norms and Values</strong>

Indian culture is centered around respect for family and higher-ranked individuals. The younger generations usually are not allowed to question elders or assert their own points of view; if they do, their voices are subdued and discouraged. The caste system is still in place, though as around 20 million more individuals join the middle-class each year, the numbers of “untouchables” continue to shrink. In rural areas of India, there is still presence of a hierarchical household in which there is a high prevalence of domestic violence. This can amount to dreadful outcomes, when for instance a victim of domestic violence come to seek what in her view is guidance within the framework of counseling, but instead receives a cultural orientation on how the role of the Indian woman is to compromise and how with time the violence against the victim may reduce. For example in Punjab, one slap a day for a woman is almost a matter of culture in some parts. So where and how do we start sensitizing people of violence against women being a crime - in all forms, mental, physical and emotional? The International Centre for Research on Women (ICRW) suggests that 80 per cent men from Punjab think violence is justified if a wife is "disrespectful" and 60 per cent justify it if a wife "does not follow instructions". Such social customs and attitudes, which still consider women inferior, abet domestic violence. Scenarios where a woman comes to seek help in and receives counseling where she is brutally informed that "everything will be fine in due time" and that she must not leave her husband or abuser can result in very violent affairs.

The NHRC has emphasized the need of opening more than one women police thanas (stations) in a district of different states to deal with crime against women, but what is being done about the "cultural beliefs" in our legal system? In the meantime, every six hours, a young, married woman is burnt alive, beaten to death or forced to commit suicide, and one in five continues to face domestic violence from the age of 15. This, when violence against women has been already been recognised as a human rights violation. Victims of violence, physical, sexual and even psychological, many women are today a statistic in the National Family Health Survey. There is also a wrongful socio-cultural perception of the 'doctors of the mad', 'pagalo ke doctor', has to diminish, if our society is inclined to do justice to people in need of mental health care.

<strong>Mental Health Information</strong>

Throughout developing countries there is neglect towards the issue of mental health. Facilities are overcrowded, underfunded, and located few and far between. A major problem in developing countries is the existence of stigma towards mental illness and neurological disorders. Many patients are misunderstood as weak or dangerous. They are more likely to be the victims of violence rather than the perpetrators; it is an issue of human rights. This stigma leads to isolation, loss of social support, and psychological distress.
While there are as many as two crore (20 million) Indians suffering from mental illnesses, the country has only 3,500 psychiatrists and 1,500 psychiatric nurses to treat them. According to the Head of the Department of Psychiatry at New Delhi's G B Pant Hospital R C Jiloha, an estimated 1-2% of India's 100-crore plus population suffers from major mental disorders and about 5% of the population from minor depressive disorders. Most of the psychiatrists are based in cities or private hospitals. But it's the government hospitals that face an acute shortage, although they are the ones which treat the poor. In the United States there are 45,615 psychiatrists.

In India, the overall prevalence of mental illness is 5.8% and is composed of: organic psychosis (0.04%), alcohol/drug dependence (0.69%), schizophrenia (0.27%), affective disorders such as depression, manic-depressive, etc. (1.23%), neurotic disorders such as anxiety, OCD, etc. (2.07%), mental retardation (0.69%), and epilepsy (0.44%). Dementia and Alzheimer’s are reported to affect 0.8%-3.4% and 0.6%-1.5%, respectively. The incidence of post-partum depression has been reported as a shocking 11% of mothers in the 6-10 weeks post-delivery. The national suicide rate is 9.2 per 100,000 per year and has been found to correlate with the presence of a personal or family history of mental disorder). Almost 6.9% of children have been found to possess a disability and 2.7% exhibit mental disability.

In Gujarat, Mental health outpatient clinics treat approximately 37 users per 100,000 general populations. Of all users treated in mental health outpatient facilities, 34% are female and 15% are children or adolescents. The users treated in outpatient facilities are primarily diagnosed with schizophrenia (52%) and mood (affective) disorders (14%). There are 4.81 patients per 100,000 general populations in the mental hospitals. The patients admitted to mental hospitals belong primarily to the following two diagnostic groups, schizophrenia (61%) and mood (affective) disorders (26%).

Out of 600 districts in India, only 22 have Mental Health Facilities. According to the National Human Rights Commission, there are two types of mental health institutions. The first are 'dumping grounds' for families to abandon their mentally ill member, for either economic reasons or a lack of understanding and awareness of mental illness. The living conditions in many of these settings are deplorable and violate an individual's right to be treated humanely and live a life of dignity. Despite all advances in treatment, the mentally ill in these hospitals are forced to live a life of incarceration. The second are those that provide basic living amenities. Their role is predominantly custodial and they provide adequate food and shelter. Medical treatment is used to keep patients manageable and very little effort is made to preserve or enhance their daily living skills. These hospitals are violating the rights of the mentally ill persons to appropriate treatment and rehabilitation and a right to community and family life.

In the past two years, only around 600 personal were trained to be primary care professionals for mental health for the population of 1.08 billion individuals. To be considered a professional in mental health, one does not need a doctorate degree. Neither a mental health nor a substance abuse policy exists and the National Mental Health Program is present in only 24 districts. Mental Health Financing is sparse, with only 2.05% of the total health budget spent on mental health.

<strong>Psychiatric Beds and Professionals</strong>
Total psychiatric beds per 10,000 population 0.25
Psychiatric beds in mental hospitals per 10,000 population 0.2
Psychiatric beds in general hospitals per 10,000 population 0.05
Psychiatric beds in other settings per 10,000 population 0.01
Number of psychiatrists per 100,000 population 0.2
Number of neurosurgeons per 100,000 population 0.06
Number of psychiatric nurses per 100,000 population 0.05
Number of neurologists per 100,000 population 0.05
Number of psychologists per 100,000 population 0.03
Number of social workers per 100,000 population 0.03

One third of mental health beds are in a single state, Maharashtra, and several states lack mental hospitals entirely. Of the existing mental hospitals, 25% had shortages in both drug and treatment modalities, and 66% reported shortages of staff. Psychologists do not have the ability to prescribe medicine and there is no system of licensing clinical psychologists.

Availability of drugs is also problematic. At the level of primary health care, none of the 12 routinely available drugs (country: carbamazepine, phenobarbital, phenytoin sodium, sodium valproate, amitriptyline, chlorpromazine, diazepam, fluphenazine, haloperidol, lithium, carbidopa, levodopa) are routinely distributed.

<strong>Engagement</strong>

Volunteers that are involved with MINDS have a connection to India and/or mental health and hence are not only passionate about the cause, but also are well-versed in projects within the sector. Our plan has been tested and works, but we need funding to further expand and affect the rural population that is being left in the darkness. Due to our collaboration with a local institution that has a community-orientated mission, we not only develop trust with the targeted communities quickly, but we develop collaboration with village leaders and authoritative representatives in order to run our program successfully and effectively. All of our volunteers will work with local social workers, psychologists, and psychiatrists who originate from the targeted region.

Share the story of the founder and what inspired the founder to start this project

[video:http://www.youtube.com/watch?v=dABm88sYrHw]

The looks of sadness, depression, and blatant signs of abuse on their faces; these are the first features I noticed on patients suffering from a mental illness in rural India. As a student at Wesleyan University, I have learned that sitting around and observing a problem will not bring the solution, but instead we must take action upon it. One of my idols, Mahatma Gandhi said, “Be the change you wish to see in the world”—a quote that I have stood by ever since I acted as Gandhi in a sixth grade school play.

Throughout my life, I have traveled to India many times with my family and noticed the lack of mental health care or for that matter knowledge of mental health. For many years, it was a very passive issue for me and I stayed on my own track with my own issues. However, when my cousin was diagnosed with epilepsy and schizophrenia, it took his mother, a nurse, over a year to find and provide the proper treatment and moral support. However, my cousin is lucky. Most people in India who suffer from mental illness never receive the care that they need. The problem is twofold. There is a lack of resources and a lack of knowledge. My cousin’s illness brought my attention to a serious issue that I have spent most of my life working towards addressing. With six years of research in the field of neuroscience and the continued pursuit of an MD/PhD in neurosurgery and psychiatry, I am ready to take on this challenge and provide Indian citizens with the care they need. To achieve my goals, I created the MINDS Foundation.

Social Impact
Please describe how your project has been successful and how that success is measured

We have launched our pilot program in July 2011, by implementing phase I (education/awareness). MINDS ambassadors are currently at our site working with newly hired local social workers and our collaborators at Sumandeep Vidyapeeth University in Vadodara, Gujarat. We will be providing those who show signs of a mental illness with a visual aid booklet and inviting them to our screening camps. To date, over 600 citizens have attended our screenings and have been educated with a budget <$300. At this point, we will be able to quantify the effectiveness of our handouts and invitations by comparing the number of patients invited to the number of patients who attend the screening camp and by decline of taboo in the community. We have also developed a questionnaire to be administered pre- and post-awareness stage (phase I). The questionnaire consists of a 36 item “Mental Health Awareness Assessment” that surveys an individual’s knowledge regarding different disorders, as well as both personal and societal perceptions of the diseases. In addition to the baseline and post-awareness surveys, we will re-survey at 1-2 month periods to mark any time-dependent shifts in biases or beliefs. If we see an increase of people from the community that attend our screening sessions we will be assured that our campaigns are effective.

During phase II, we will be providing a preliminary screening and referring patients to the rural clinic at Gola Gamadi, Vadodara. At this point, we will be able to quantify the effectiveness of our screening camps by comparing the number of patients referred to the number of patients who successfully attend their appointment. We will analyze statistics from the clinic at Gola Gamadi to determine the overall increase or decrease of patients. We will also be able to determine if it is financial stress that is specifically preventing patients from receiving treatment (relapse prevention).

We are aiming to reduce the time spent from onset of illness to first consultation; and if we can achieve this we will know that our program is successful. Also, we can look at identifying early patients that require hospitalization and immediately refer them to the main hospital and once they are better, they can follow-up at our rural clinic located closer to their community.

Our statistics will be based on our intervention; whether we can pick up patients who need psychiatric care - who were not as on date utilizing proper psychiatric facility - so the OPD attendance of our center at Gola Gamdi will show these results. Also we can have finer impact measurements like issues of mental health in elderly women - awareness issues, after awareness and screening what percentage comes for care. The doors are open for many clinical and epidemiological research studies.

How many people have been impacted by your project?

101-1,000

How many people could be impacted by your project in the next three years?

More than 10,000

Winning entries present a strong plan for how they will achieve growth. Identify your six-month milestone for growing your impact

In six months, we will have educated (75,000 people) and consulted (5,000 people) in 30 targeted villages in the region of Vadodara, Gujarat. We will then be able to begin providing treatment.

Task 1

We will run Phase I by hosting video screenings and distributing visual aid booklets to raise knowledge and awareness about mental health. To date, each screening has been attracting ~100 people.

Task 2

Host consultation camps in the 30 villages in order to begin providing diagnoses and medical treatment for patients recognized during awareness campaigns.

Task 3

Build a sustainable system of awareness education run through clinics and workshops in villages. Begin treatment of 5% of the impacted population (100% of the mentally ill).

Identify your 12-month impact milestone

We will have treated 5,000 patients and begun to help them reintegrate to continue educating their communities. We will also begin to incorporate new rehabilitation programs such as art/music/sports.

Task 1

Train treated patients to run awareness and education campaigns in their own communities, enabling them to perform the same task for which we currently employ social workers.

Task 2

Develop strong partnerships with medical schools, public health schools and professionals in the US and India to increase the number of volunteers participating in our program.

Task 3

Implement novel psychosocial rehab programs to design a program of facilitated reintegration that embraces the nuances of Indian culture.

How will your project evolve over the next three years?

Over the next three years, our project will become more and more widespread. By year three, we will be not only well-established in Gujarat but also throughout other rural areas in India, specifically in areas of Andhra Pradesh. As each cycle of Phase I-Phase IV is completed, the amount of individuals raising awareness and spreading word about our program will exponentially increase. Therefore, we will have a constantly replenishing source of new recruits joining the program and furthering the program. We also plan to spread to rural regions of South America, specifically, Columbia.

Sustainability
What barriers might hinder the success of your project and how do you plan to overcome them?

1. <strong>A dependence on funding.</strong> As a not-for-profit organization, The MINDS Foundation is highly dependent on donations and grants. The sustainability of our programs depends on our revenue via special events and donors. Although, our program costs are quite low, the more funding we receive, the more patients we can provide medical care for.

2. <strong>The team.</strong> The organization has a very strong board of directors; however the staff consists highly of students. Due to this, their academic careers will of course always come first. If we are able to secure enough funding for some of these students create a career in the nonprofit world by first working for us that would be ideal. Other volunteers for the organization are full-time in other careers and hence are not able to dedicate all of their time for The MINDS Foundation. However, the Board is constant and dedicated to the sustainability and overall success of the organization.

3. <strong>Governmental interference.</strong> Our organization is working abroad in developing countries and hence may be faced with issues dealing with local government and village politics. To deal with this situation, we will partner with the local community to integrate our programs with their involvement. We also hire social workers and staff from within the targeted region to aid in our program in order to create a comfortable environment for patients and the community being addressed.

4. <strong>Sustainability.</strong> We will not begin implementing programs until we are certain that we have the required funds to keep the program sustainable for at least one year. Mental illness is a delicate issue and we cannot dissolve the program halfway through due to inadequate funds. At all times, the organization will have a dedicated grant writing team and fundraising/donor relations team.

Tell us about your partnerships

A strength of our program and what makes us unique is our <em>collaborative attitude</em>. Instead of using raised funds to build infrastructure or pay for administrative services, we will directly use funds for patient care and education. We partner with other community-orientated institutions and organizations at our field site in order to pool together our resources to best address the issue in the rural population. An overarching goal of The MINDS Foundation is to integrate mental health care into primary care, hence we partner with institutions that already run rural primary health care clinics. We plan to integrate a mental health care component into these clinics by hiring a social worker, psychiatrists, and clinical psychologists.

Explain your selections

Friends and family who share a similar interest in spreading mental health awareness and eradicating stigma have been making small donations to the foundation. Larger sources of funding come from individuals such as physicians or business workers who are touched by the purpose of the project or have a personal, emotional connection to the issue. We also receive funding for special events from local businesses and venues. We hope to begin receiving funding from foundations.

How do you plan to strengthen your project in the next three years?

We plan to strengthen our project by creating a well-developed volunteer program. With this program, our MINDS Fellows (volunteers) will receive pre-training in mental health care, Indian culture, and how to work with patients prior to working in the field. We are already well into completing the development of this program, working side-by-side with our Medical Advisory Board.

We are also working with our Medical Advisory Board to develop our program into an opportunity for US medical students to participate in as an elective. By integrating both of these avenues for students to get involved we hope to reach a wider network and receive support from academia.
Over the next three years, we also hope to receive funding from foundations and other grant-giving organizations. We are also in the works to develop partnerships with pharmaceutical companies that may be able to aid in providing medication to our patients at a minimal cost.

We are also planning to document our work in the field through a series of films which we hope will bring awareness towards the issue of mental health care, specifically in rural areas of the developing world. These films will follow patients as they go through our four-phase grassroots program. They will also follow our volunteers as they enter the field and make a positive social impact.

Challenges
Which barriers to health and well-being does your innovation address?
Please select up to three in order of relevancy to your project.

PRIMARY

Lack of access to targeted health information and education

SECONDARY

Lack of physical access to care/lack of facilities

TERTIARY

Limited diagnosis/detection of diseases

Please describe how your innovation specifically tackles the barriers listed above.

Our innovation tackles the primary barrier by providing the villages with the education they are lacking through video screenings, visual aid booklets, and educational workshops. We tackle the secondary and tertiary barriers by holding regular mental health camps where mentally ill people can access treatment and other services such as: social workers, psychiatrists, clinical psychologists. We will also be providing transportation to the local rural health clinic for patients. This system allows mentally ill people to easily get their treatment, often only minutes from their home. They no longer have to pay for expensive transport and they don’t have to spend a whole day travelling just to visit the psychiatrist.

How are you growing the impact of your organization or initiative?
Please select up to three potential pathways in order of relevancy to you.

PRIMARY

SECONDARY

Enhanced existing impact through addition of complementary services

TERTIARY

Grown geographic reach: Multi-country

Please describe which of your growth activities are current or planned for the immediate future.

As mentioned, our phases are designed to be self-propagating so that each successfully informed or treated individual can inform others of the program. The program will be complete by first starting with Phase I, education, and then move on to consultation and treatment of patients. After accomplishing our program in the thirty villages in the district of Vadodara, we will begin the program at another rural site within India. Eventually, we will aim for global impact, though this process will require much more funding and time. We are also working with our Medical Advisory Board to develop our program into an opportunity for US medical students to participate in as an elective. We hope to create a program in which US students can be exposed to rural psychiatric care.

Do you collaborate with any of the following: (Check all that apply)

Technology providers, For profit companies, Academia/universities.

If yes, how have these collaborations helped your innovation to succeed?

Several members of for-profit companies have joined our board to offer their expertise; for example, our treasurer has worked in investment banking and is well familiarized with dealing with budgets and financial language. Our collaboration with the Sumandeep Vidyapeeth University has allowed us to create a purely grassroots program in which all funding goes directly towards patient care. The collaboration also allows our volunteers to work side-by-side with local psychiatrists, staff, social workers, and students at the targeted site. In the states, our collaboration with universities has allowed us to recruit a diverse pool of volunteers, each with a different perspective but all with a unified passion for progressing the MINDS project.