Family Fellowship Society for Psychosocial Rehabilitation Services (1993–2019): A Self-help Movement

Abstract

Family Fellowship Society for Psychosocial Rehabilitation Services is an initiative of families of persons with mental illness and with psychiatric disabilities. It has been advocating self-help movement on the part of the families who have been on the lookout for alternative care services. This venture has been technically supported by the mental health professionals at National Institute of Mental Health and Neurosciences, Bangalore. It is a collaborative effort of families and professionals to address the needs that have been felt by the consumers and the professionals. It is the first of its kind in India. Over a period of 26 years, 150 + families have availed the alternative care for psychosocial rehabilitation services for their wards. In this context, an attempt was made to enlighten the psychosocial rehabilitation services at family fellowship society.

Introduction

The families of persons with mental illness and allied disabilities have been on the lookout for alternative care services to lessen the burden experienced over a longer period. The discovery of Chlorpromazine in 1950’s (Braslow & Marder, 2019) is one of the greatest advances in medicine and in the history of psychiatry that brought revolutions in the way mental illness was treated during twentieth century. It paved the way for deinstitutionalization of long-stay patients in state mental hospitals (Nizamie & Goyal, 2010). Another breakthrough in the history of psychiatry was the introduction of the second-generation atypical antipsychotics in early 1980’s (Risperidone, Clozapine) which could address unmanageable active symptoms (Kishimoto et al., 2013), however these drugs alone do not prevent relapse (Rubio et al., 2020). The mental illness causes significant caregiver burden (Peng et al., 2022; Jagannathan et al., 2014; Stanley et al., 2017; Sadath, 2009; Kurian, 2009; Gayathri, 2006; Paul & Ranganathan, 2002; Mohan, 2000; Lingam, 1998; Ammapattian, 1995; Ali, 1993; Aruna, 1998; Johnson, 1994; Ashalatha & Muralidhar, 2002; Palanichamy, 2008; Jagannathan, 2011). Chronic and disabling nature of illness does not put the family at ease. Family members continue to look forward for qualitative outcomes of their ward such as being independent, being considered as ‘normal’ by others, being respected by others, being happy, holding a job, getting married, having satisfied sexual relationship, having children, not being on medication, taking care of family (Gopal et al., 2020) and not being idle (Gandhi & Jones, 2020). The multi-disciplinary team members, based on the division of labour, and by their virtue of expertise, they have been striving hard to bring forth the needed changes in the living, learning and work situations.

About 20–30% of the mentally ill persons are said to be returning to the pre-morbid level of functioning (Harding et al., 1987; Jobe & Harrow, 2005; Harrow et al., 2005; 2014; Harrow & Jobe, 2007; Harrow et al., 2012; Leff et al., 1992; Salzer et al., 2018; Hansen et al., 2023; Jääskeläinen et al., 2013; Menezes et al., 2006; Hegarty et al., 1994; Conley & Kelly, 2001; Jayasankar et al., 2022; Gururaj et al., 2016; ISLDB Initiative, 2020; Zhang et al., 2022; Antunes et al., 2018; Chavan et al., 2018; Ranganathan et al., 2012; Kumar et al., 2018; Chaudhury et al., 2006) when combination of pharmacotherapy and regular psychosocial interventions are provided (Hegarty et al., 1994). Another 20%–30% of persons do not respond to standard antipsychotic drugs and become treatment resistant (Conley & Kelly, 2001). About 50–70% persons with common and severe mental disorders left with moderate disability and 30% with severe disabilities (Jayasankar et al., 2022; Gururaj et al., 2016; ISLDB Initiative, 2020; Zhang et al., 2022; Antunes et al., 2018; Chavan et al., 2018; Ranganathan et al., 2012; Kumar et al., 2018; Chaudhury et al., 2006). Mental illness has exorbitant relapse rate which varies from 46 to 90% (Gitlin et al., 1995; Kazadi et al., 2008; Köhler-Forsberg et al., 2019; Agenagnew & Kassaw, 2020; Moges et al., 2021). In these circumstances, the family members continue to feel the burden owing to relapse, ever-emerging unacceptable behaviour patterns and unproductive activities of the clients.

Need for Self-help Movement (Family Fellowship Society) Model

The average Indian families with persons suffering from mental illness who are on the lookout for alternative care services (residential care services) are inaccessible and unaffordable. Most families are looking for long-term care, owing to the severity of the illness or chronic nature of illness, which may incur huge expenses that are recurrent on their part. The burden being experienced by these families need to be addressed, preventing them from having caregiver burnout.

About Family Fellowship Society: The Genesis of the Movement

The persons with mental illness are like any other diseased persons, who need lot of care and attention. Unfortunately, there are fewer resources available to reintegrate them into society. There are no comprehensive rehabilitation services for persons belonging to the middle and lower middle class families. These family members felt it was necessary to start a kind of programme that would offer affordable and appropriate rehabilitation services to their wards.

When the family members of mentally ill have been looking for such kind of a progarmme to meet their needs, the department of psychiatric social work at NIMHANS, Bangalore in collaboration with other mental health professionals and well-wishers from different academic and service organisations, have taken the initiative to form a forum to provide suitable psychosocial rehabilitation services to the mentally ill. This forum is known as the Family Fellowship Society for Psychosocial Rehabilitation Services (FFS). It was registered under the Karnataka Societies Registration Act, 1960 (Sl.No. 775/93-94 (Fig. 1).

Fig. 1.

Lateral view of family fellowship society

FFS is a non-profitable service organisation for the rehabilitation of the mentally ill, run by the families of the mentally ill with the support of the psychiatric social work professionals. A self-help movement—a project of this kind addresses the multifarious needs of family and patients including domicile care, supported employment, supported education, drug adherence and managing frequent relapses, addressing unmanageable, aggressive behaviours, and engaging them in productive activities (Fig. 2).

Fig. 2.

Inmates were playing volley ball

A memorandum of association was prepared by the Department of Psychiatric Social Work, signed by Former Senior Professors and the then Head, Prof.I.AShariff, Dr.R.Parthasarathy, Dr.PS Gopinath, Emeritus Professor of Psychiatry, Dr.M.Ranganathan, Mrs. Glady Selvaraj, Mrs.Sheila Iyengar, Mrs.Jayakumari Raju, Mr.Narayan Kamath, K, Deputy General Manager, Canara Bank. The self-help movement (FFS) was launched on the 9th Dec 1993 at Bangalore. Sri.Ramalinga Reddy, the then Minister of Industries and Commerce, Govt of Karnataka, inaugurated the FFS in the presence of Dr. SM Channabasavanna, Former Director, NIMHANS. In 2019, Dr.Rangashri Kishore, Director of Library Sciences, Ashoka University, Haryana became the President-elect of FFS. She has been involved in FFS since its inception (Fig. 3).

Fig. 3.

Inmates were seen participating in Group therapy session

FFS project with the self-help movement as a vision was considered as first of its kind in India, without the financial support of State/ Central Government and International organizations. Dr.M.Ranganathan was the driving force behind this movement as he was more empathetic towards the sufferings of families of mentally ill by virtue of being the caretaker for seven family members suffering from major mental illness and most of them were treated at NIMHANS during that time.

The first residential care service unit of the FFS was started in rental premises in the community at BTM layout II stage, Bangalore (six kilometers away from NIMHANS) with two male residents who got transferred from one of the leading rehabilitation centres from Chennai, (Boaz, Psychiatric Rehabilitation Centre at Medavakkam) whose families were hailing from Bangalore City. Within five years of service, there was a necessity to introduce the second residential care service in the same area. At any given point, there were 30–40 residents’ availed services from both the rental premises. At every level, the FFS was developing and executing the various rehabilitation services. All the inmates and family members participated actively and contributed significantly to meet the monthly expenditures, both recurring and non-recurring.

The Staff members were recruited with the needed professional qualifications. One of the clinically restored female residents was appointed as warden; she was a school teacher by profession, and Mr. George, was appointed as a nurse, an ex-army nursing cadre was trained as a rehabilitation nurse for two years as a day boarder at the Occupational therapy Department, NIMHANS. The Staff details were given in Table 1.

Table 1.

Staffing pattern

Sl. No	Staff details	No
1	Visiting consultant psychiatrist	1
2	Programme officer (Master’s degree in social work (medical and psychiatric social work/M.Phil psychiatric social work)	1
3	Nursing professional (Psychiatric Nurse)	1
4	House Manager	1
5	Warden	1
6	Cook	1
7	Helper	2
8	Gardner/support staff	1
9	Volunteers	2

In 1993, the monthly expenditure towards the service charges for inmates was Rs.2500. Until 2005, it was Rs.5000 per resident and in 2019, FFS was charging Rs.9000 per resident. Most of the family members belong to the middle and lower-income groups who could not afford the service charges were given a 50% concession in the service charges.

After serving six successful years in the city, FFS moved to a rural setting in the year 2000 owing to the demand to accommodate residents at Lakshmi Sagara village, Anekal taluk, which is located Bangalore-Hosur Highway 25 kms away from NIMHANS. FFS premise at Lakshmi Sagara village is bestowed with greeneries such as mango groves and coconut groves. (Two acres of land with perennial water facility). Ecology of FFS promotes the well-being of the residents.

Activities of Family Fellowship Society

Psychosocial rehabilitation Services offered:

Long-term residential care and short stay home care facilities to fulfill the requirements of psychosocial rehabilitative measures, social skills training, family counselling and family therapy. Day care services to enable the person with mental illness to learn the skills that are needed to function in the society. Vocational training facilities, training non-professionals (lay volunteers) and para-professionals in the field of mental health care and promotion of various rehabilitation programmes, organising self-help groups for the mentally ill and their family members. Conducting seminars, workshops and conferences on different subjects of psychosocial rehabilitation for the benefit of the mentally ill persons, their family members, professionals and personnel of voluntary social service organisations. Conducting camps to enable them to learn activities of daily living skills, networking with national and international organisations to provide services that are needed for psychosocial rehabilitation, publishing literature on psychosocial rehabilitation, taking up research activities, involving volunteers to provide assistance in organising recreational activities, job placement, resource mobilization, and vocational training. The structured daily activity schedule of FFS was shown in Table 2, Infrastructure of FFS was shown in Table 3 and Adherence of Minimum standards of care for mental health establishment by FSS was shown in Table 4.

Table 2.

Structured activity schedule

Time	Organised activities
6.00 am	Wake-up time
6.00 a.m–7.30 am	Self-care/personal hygiene
7.30 a.m–8.00 am	Physical exercise/Yoga
8.00 a.m–9.00 am	Prayer and breakfast
9.00 a.m–9.30 am	Medication
9.30 a.m–11.00 am	Occupational therapy activities
	Newspaper reading/gardening
	Individual sessions
	Group activities/meeting
	Clinical reviews and assessments
11.00 a.m–11.30 am	Tea/coffee break
11.30 a.m–1.00 pm	Vocational training
1.00 p.m–2.00 p.m	Lunch
2.00 p.m–3.00 p.m	Medication and rest
3.00 p.m–4.30 p.m	Social skills training
	Family guidance and counselling
4.30 p.m–5.00 p.m	Tea break
5.00 p.m–6.30 p.m	Recreational activities
	Shuttle/volley ball/music therapy/watching TV
7.00 p.m–7.30 p.m	Prayer
8.00 p.m–8.30 p.m	Dinner
8.30 p.m–9.00 p.m	Medication
9.30 p.m–6.00 am	Sleep

^*Self-help group meetings of the family members once in thirty days

Table 3.

Infrastructure at FFSPRS

Type of facilities provided	Residential care
No of beds available	50
No of beds available for men	30
No of beds available for women	20
No of floors in women’s ward	G + 1
No of floors in men’s ward	Ground floor only
Dining hall	2
Number of rooms	5
Store room	1
Dormitory	1
Steel cots(single and double)	50
Recording of progress made by inmates	weekly
Separate intake/ case history proforma	Yes
No of television with cable connection	2
Computers with internet connection, printer	2
Telephone connection landline + mobile phone	Yes
Solar panel installed	Yes
Library	1
Reading hall	2
Prayer room	1
Multi-purpose hall	1
Visitors lounge	Yes
Accounts available for auditing	Yes
Maintenance of accounts book	Yes
Suggestions/complaints box	No
Any request received under RTI Act, 2005	Nil
Room for conducting group therapy	Yes
Counseling rooms/therapy rooms	3
Maintenance of stock book	Yes
Sewing machines for vocational activity	10
Washing machine for inmates	1
Refrigerator	1

Table 4.

Minimum standards for mental health establishment adherence by FFS

Standard I	The premises are well maintained and kept in good livable condition	Yes
	Concrete structure, strong enough to withstand heavy rains	Yes
	Seepage free, functional windows and doors	Yes
	Lift with generator backup for areas above 4th floor	NA
	Sufficient ventilation and natural light	Yes
	Sufficient illumination after sunset, for reading without causing strain to eyes	Yes
	Illuminated passages leading to toilets and emergency exits during the night	Yes
	Inverters for emergency lights during power failures and load shedding	Yes
	Periodic painting of doors, windows and walls, internal and external	Yes
Standard II	The living conditions are comfortable	Yes
	Separate cots with mattresses, pillows, bed sheets and blankets in winter	Yes
	Provision of mosquito repellants or control measures in sleeping areas	Yes
	Ratio of fans to beds, not less than 1:5	Yes
	Minimum two exits in a when dormitory has more than 12 inmates	Yes
	No sleeping cots in passages, verandas, under staircase except dormitory/ rooms	Yes
	Hot water for bath during winter months	Yes
Standard III	Hygiene, cleanliness and sanitation is maintained	Yes
	Daily sweeping, swabbing and dusting of the entire premises	Yes
	Sanitation maintained in all the areas using disinfectants	Yes
	Number of Toilets is in the ratio of 1:5 and bathrooms is in the ratio of 1:10	Yes
	Separate toilets and bathrooms for male and female inpatients	Yes
	Wash basins is in 1:12 outside the toilets/bath rooms and in the dining area	Yes
	Twenty four hour availability of water in wash basins, bathrooms and toilets	Yes
	Weekly change of bed linen	Yes
	Washing of soiled linen in a clean and hygienic environment	Yes
	Periodic pest control treatment and premises especially kitchen	Yes
	Rubbish bins in rubbish generating areas and daily disposal of rubbish	Yes
Standard IV	Wholesome, sumptuous and nutritive food and portable drinking water is provided in comfortable settings	Yes
Standard V	Facilities are available for leisure and recreational activities	Yes
Standard VI	Adequate Health Professionals is employed to provide proper treatment	Yes
	Inpatients seen on a regular basis by a mental health professional	Yes
	A medical officer will be available on call 24 h to meet the emergencies	Yes
	mental health professional is available to provide mental health services	Yes
Standard VII	Medical and Para-Medical Staff engaged as per specified requirements	Yes
	Regular visits by a qualified medical practioner,	Yes
	Tie up with a local hospital for admitting patients in case of need	Yes
	Mental health nurses engaged for shift duty	No
	Minimum 12th pass, multipurpose workers employed in 1:10 ratio	No
Standard VIII	The premises have adequate floor space available	Yes
Standard IX	Equipment and articles procured and used for inpatients as per requirements	NA
Standard X	OPD facilities for the treatment of persons with mental illness as out-patients	NA
Standard XI	No torture, cruelty, inhuman and degrading treatment, punishment, exploitation, violence, negligence and abuse of patients	Yes
	No verbal, physical, sexual or mental abuse by the staff or others	Yes
	No insistence on inpatients wearing uniform	Yes
	No compulsion to tonsuring or cropping of hair	Yes
	No compulsion to perform non personal work; any such work given with consent, suitable remuneration paid	Yes
	No regimentation in regard to sleeping hours	Partial
	Safe injection practices followed as per WHO guidelines	Yes
Standard XII	Alternate methods are used in place of seclusion and restraint	Yes
	No chaining or roping of patients	Yes
	No seclusion and no solitary confinement	Yes
	Chemical and physical restrains used only to prevent inpatients from hurting themselves or others, circumstances recorded in a separate register	Yes
	Nursing Staff trained to use de-escalation techniques to prevent patients from harming themselves and others	No
Standard XIII	Privacy, Safety of patients and their confidentiality is protected	Yes
	No discrimination based on sex, colour, creed and economic condition or on any other ground and no admission or no treatment denied	Yes
	Reasonable freedom and facility for pursuing religious beliefs	Yes
	Freedom to meet or refuse to meet the visitors	Yes
	Sign boards displaying ‘for men’ and ‘for women’ in local language (toilets)	No
	Examination female patients done in the presence of a female attendant/female nursing staff, if conducted by male medical staff	Yes
	Examination male patients done in the presence of a male attendant/male nursing staff, if conducted by female medical staff	No
	Independent lockers provided to patients to keep their personal belongings	Yes
	Patients with suicidal tendency allotted a bed in a room without any sharp instrument or article which can be used for self-injury	Yes
	Patients with suicidal tendency allotted a bed in a room with wall fan	No
	All windows with grills fixed	Yes
	Necessary procedures exist to meet fire and non-fire emergencies and safe exit for inmates and others	Yes
	Appropriate display of directional fire exit signage, minimum in two languages, one of which is local	No
	All fire safety measures taken including fire prevention, mitigation, evacuation, containment	Yes
	Fire safety measures detection and mock drills	No
	Firefighting equipment periodically inspected, chemicals replenished and kept in usable condition	Yes
	Patients’ case histories and records preserved and kept confidential	Yes

Therapeutic Modalities

Various therapeutic modalities including social casework intervention, group therapy, family interventions, vocational guidance, bibliotherapy, horticultural therapy, social skills training, independent living skills training, referral services, continuity of care services, exploring suitable vocational rehabilitation opportunities, and supported employment were used. The therapeutic community approach was the guiding principle of this self-help movement. A few principles include flattening hierarchy, empowering the inmates and families as leaders and to become auxiliary therapists (Fees & Kennard, 2023), democratization, open system, information sharing, problem-solving and staff, decision making by consensus (Jones, 1982), open and free communication between patients and staff, complete freedom shared by staff and patients, honest in admitting ones limitation, readily available staff to help inmates, shared responsibility, participation of patients in the treatment of other patients, mutually assisting each other (Jones, 1956) structured activity, regular group meetings, participation in the decision-making process, autonomy, collective responsibility, consumers are addressed by their name and referred as residents or inmates not as patients, inmates also address staff by their name, by doing so the difference between patients and staff are minimized.

Organized patient activities, permissiveness, communalism, democratization, rehabilitation through reality confrontation were the main ideological themes of ‘therapeutic community’ observed by Robert Rapport (Rapoport, 1960). These psychosocial factors such as influence of therapeutic setting, institutional atmosphere and infrastructure, expectations from the social environment and their social interaction influence long-term outcome of mental illness (Ciompi, 1984).

Awareness Programmes

FFS carried out periodical mental health promotional activities and awareness programmes including organizing world mental health day, International Day of Persons with Disabilities, International women’s day, conducting workshops and conferences in the IMA premises, organizing rallies creating awareness on stigma eradication, early identification and treatment, family participation, publishing articles on the same on leading newspapers, representing the families and patients for the legislative and their welfare measures.

Benefits for the Family Members

Family members availing residential care for their wards at FFS were educated, orientated and trained to equip themselves to address the issues of- minimizing the dependency of the patient, altering the unacceptable behaviour, identifying and exploring their residual abilities, arresting and preventing from entering into chronicity, reducing the burden on their families, making them aware of welfare measures provided by the Central and State governments and the need for joining self-help groups. Over a period of time, families’ active participation in the therapeutic activities and programs in the FFS brought the needed changes for their wards which facilitated them to reintegrate into the family and community living. The basic requirements of rehabilitation intervention are addressed without compromising the quality of services. The economic viability is taken with utmost care. The psychosocial rehabilitation programs and services provided at Family fellowship society are cost-effective. It is economically viable for families, especially from poor socio-economic status. Per day expenditure for the clients’ costs US $ 2.5, when compared to the well-established psychosocial rehabilitation centres in and around Bangalore city has been US $ 10/ per day). Personnel working at the FFS were allowed to participate in national and international conferences related to psychiatric rehabilitation and encouraged to continue higher studies.

Awards and Recognitions

After two and a half decade of dedicated services, FFS was recognized and honoured by Indian Psychiatric Society (Karnataka Chapter) in 2010, CADABAMS, (Bangalore) in 2011, M S Chellamuthu Trust and Research Foundation (Madurai) in 2010, and World Association of Psychiatric Rehabilitation (Indian Chapter) in 2016, Niraivagam, Don Bosco Institute of Psychological Services, (Chennai) in 2017 and Krupa Mayee Institute of Mental Health, Pune.

Training

Regular orientation visits by M.D Psychiatry post-graduates, M.Phil Clinical Psychology, Psychiatric Social Work, and M.Sc Psychiatric Nursing students who were posted in Psychiatric Rehabilitation Unit and Block Placement training programme for medical and psychiatric social work students from different southern universities is offered at the facility.

Challenges

Challenges Encountered in Replicating the Model

One of the significant challenges faced by the FFS model was the non-availability of space (own land to provide infrastructure) and allied facilities for treatment and rehabilitation purposes for further scope for increasing the number of beneficiaries. Those families with resources are not volunteering to meet the expenses of those who have fewer resources. Another challenge is non-availability of grant-in-aid for self-help movements. Considering the rehabilitation service units (half-way homes) on par with nursing homes for licensing and renewal, and implementation of medical waste disposal mechanisms and fire safety measures in residential care service units on par with nursing homes and hospitals were the challenges faced by FFS. Yet, another challenge was staff attrition, many young mental health professionals after their brief stint at FFS wanted pursue higher education at NIMHANS and other mental health institutions.

Charitable organizations are willing to provide financial assistance for rehabilitation of other disability categories such as visual, hearing, and locomotor impairments. In the case of mental illness, donors feel that their financial support may not fetch any reward owing to the cognitive deficits, unpredictable behavior in persons with mental illness and intellectual disabilities (IDD). The general notion of donors’ is that any amount of financial support for PwMI/IDD is not making them more productive and there is limitation in their complete recovery and rehabilitation.

However, the FFS’ policies and programs are considered a model for the Indian context. It is challenging to replicate the same for the rest of the country. The probable reasons could be the stigma attached to the mental illness and the pessimistic outlook on the outcome of schizophrenia illness. The negative attitude of mental health professionals toward community-based mental health services (Li et al., 2022; Barnes et al., 2000) and self-help movements is considered yet another major hindrance in this context (Emerick, 1990; Kurtz et al., 1987; Kurtz & Chambon, 1987; Salzer et al., 1994).

A developing country like India has been undergoing many constraints in the area of mental health, shortage of mental health professionals (10,000 Psychiatrists, 2000 clinical psychologist, 1500 psychiatric social workers, 1000 psychiatric nurses for 14 crore mentally ill population) (Raju, 2022; Math et al., 2019; Garg et al., 2019) infra-structure, material resources, (Saxena et al., 2007; Kakuma et al., 2011; WHO, 2011) positive attitude towards mental illness, continuity of care services (Adair et al., 2003), technical ‘know-how’, treatment prescription for the rural population (Kirby et al., 2019; Chandra, 2020), providing community-based mental health services (Thornicroft et al., 2016; Ng et al., 2014; Giri et al., 2021), lack of coordination among health, education, social welfare sectors and a limited number of non-governmental organizations serving in the area of mental health (Giri et al., 2021; Visalakshi et al., 2023; Patel & Thara, 2003, 2010; Patel & Varghese, 2004; van Ginneken et al., 2017; Rangaswamy et al., 2021). A multinational organization like Richmond Fellowship Society (UK) has supported residential care rehabilitation facilities, especially in Asia–Pacific regions. Family forums like AMEND, ASHA (Chennai), and FFS have been undertaking responsibilities to provide the support needed for families to make use of even meager mental health services introduced by the State and Central government in India.

Strengths of the FFS Model

Families coming together and collaborating with mental health professionals to address treatment and rehabilitation requirements of the persons with mental illness, jointly doing the project, making it economically viable and sustainable over 25 years without financial assistance from the State and Central Governments and International organizations. Such collaborative efforts of the family members, by the families and for the families, imbibe and promote the values of self-help movement.

Limitations

Family fellowship society model has multifarious limitations in terms of funding support, infra-structure and human resources. After the implementation of seventh pay commission (Rs.18,000 as minimum wage), FFS was unable to meet to the expenditure of staff salary as the family members were unable to bear out-of-pocket expenditure. Preparing the family forums to address the felt needs in collaboration with mental health professionals would undoubtedly pave the way for better outcomes and enhance the quality of life of persons with mental illness.

Way Forward

Family Fellowship Society Model may be carried forward with the help of existing District Mental Health Programme (DMHP) in 704 districts of India. DMHP team can network with local non-governmental organizations, mobilise community resources, volunteers and families with similar felt needs to implement the FFS model in each districts. The Rights of Persons with Disabilities Act (2016), and Mental Health Care Act (2017), have been emphasizing meticulously to treat the psychiatrically disabled on par with the other disabled, regulating the organizations providing mental health services (NGOs) to maintain the minimum standards of care. Under the Deendayal District Rehabilitation scheme, Rs.20 lacs financial assistance is given to certain eligible states (which has less or no half-way homes) to run residential care services for mentally ill. Ministry of Health & Family Welfare gives financial aid Rs.83.20 lacs per annum for DMHP in each district. As DMHP has needed human and financial resources, hence FFS model can be replicated in each district. DMHP social worker can network with local non-governmental organizations, mobilise community resources, volunteers, identify the families with similar needs and motivate them to come forward. It would be possible to support the family members’ initiative to provide residential care services for their wards. Family expects mental health professionals to provide technical support and all other requirements they could manage on their own and mobilize resources from their ends. Spontaneously, such endeavors of the families would promote self-help movement.

In the recent past, one could witness the significant progress after the budget allocation of Rs.1000 crores to implement the National Mental Health Programme in India, establishment of National Institute of Mental Health Rehabilitation in Madhya Pradesh, 120 crore budget allocation for National Tele-Mental health Programme (Tele-MANAS). The active participation of the World Association for Psychiatric Rehabilitation (WAPR, India) and the World Fellowship for Schizophrenia and Allied Disorders (WFSAD) in the policies and programs do complement the ever-growing process of providing the needed mental health services for the needy.

The efforts of the families of persons with mental illness have come out with the model to share the burden of families looking for alternatives to home care services. The FFS model of residential care rehabilitation services is cost-effective, economically viable, sustainable model for lower and middle income families over 26 years (Ranganathan et al. 2012). We demonstrated, FFS was self-sustainable model in terms of running on its own resources without external funding. Over 25 years FFS provided residential care rehabilitation services as an alternative to home and hospital care, that solely depend on its own resources, keeping the self-help movement as its prime principles, without the financial assistance either from State or Central Governments and International organizations. Total expenses towards food, premises rent, staff salary, medicine, travel, stationaries, honorarium for consultants visit and other recurring expenses are shared by the families. Most families did not stay with patients except few. At the time of admission, most families agree to the commitment that they would visit their clients and participate in the activities of FFS, minimum once in three months. After admission, most families wanted to keep their ward for long stay. It was observed that most family members had time constraints. Because most family caregivers were siblings and aged parents and had their limitations.

Collaborative efforts of mental health professionals and family forums have ensured the quality of life of persons with mental illness. By and large, the active participation of family members in programs of this kind does eradicate the stigma attached to mental illness. It is found that the majority of the beneficiaries are from mild to a moderate category of disability which may further be prevented by suitable alternative care services like day care services, sheltered workshops, half-way homes, transitory home programs, self-help group, foster care home services, manned by the family forums of persons with mental illness. The welfare states need to motivate and encourage the family forums to participate actively, along with mental health professionals at every mental health service, thereby ensuring the quality of services for facilitating the quality of life of persons with mentally and their families as well.

After serving more than 150 clients and their family members for 26 years, the family fellowship society services ended in November 2019. The services of FFS came to an end owing to following reasons; landowner of the premises wanted it back for his personal use, non-availability of suitable premises with minimum required infrastructure, difficult procedures (renewal of license every 12 months) and cost involved in renewal of license under the Mental Health Care Act, 2017, (it was Rs.20,000 in 2019, now it has been reduced to Rs.5000 for mental health establishments with 50 beds in 2021) treating the psychosocial rehabilitation centres on par with nursing homes and hospitals to fulfill the requirements for license, diminishing referrals from the mental health professionals, hospitals and the mushroom growth of rehabilitation centres by untrained professionals in their locality.

Experiences of the family fellowship model over 25 years with the limitations needed for infrastructure and financial support demonstrated the economic feasibility and sustainability to continue to provide services under the able leadership of reputed government organizations. This model can be replicated in the country under district mental health programmes. This would reach the unreached by promoting co-operative movement initiatives. As the Government of India advocates, all welfare services can be taken under private–public partnership, and corporate social responsibility funds can be sought.

Conclusion

The FFS has demonstrated a sustainable model with an emphasis on self-help movement for low and middle income countries.