Affordable residential rehabilitation facilities for persons with chronic mental illness: An emerging need

INTRODUCTION

India is a collectivist society that emphasizes family integrity, loyalty, and unity. The Indian family is a critical resource in caring for persons with chronic mental illness (patients from hereon), which takes care of financial, emotional, daily care, and hospital access-related needs.[1] Three large-scale international collaborative studies by the World Health Organization demonstrated that persons with schizophrenia in India and other developing countries had a better outcome than their Western counterparts.[2,3,4] Much of this has been attributed to the excellent family support in developing countries.[2,3,4] Leff et al.[5] have suggested that traditional joint families allow for diffusion of burden in families caring for the patient, which could mediate the good course and outcome of major mental illnesses.

The Indian family and caregiver burden

Families assume the role of primary caregivers because of the close family ties in these traditional societies. Being a caregiver is neither chosen nor planned for, and preparation for the role occurs after it has been acquired.[1] Caregiving shifts from active physical and medical care in the acute phase to more social and psychological care during remission.[6] The family caregivers experience significant stress and burden and need help coping with it. Issues of poverty and illiteracy exacerbate the caregiver burden. In general, the poor functioning of the patient because of symptoms leads to a more severe burden.[7] Behavioral disturbances of the patient, including violent behavior, take a considerable toll on the caregiver and often exposes them to the risk of harm.[1] Therefore, the family members can be called “the silent sufferers.”[7]

The significant areas of the (objective) burden of caregivers include adverse effects on the household routine, including childcare, disruption of relations within and outside the family, restriction of leisure time activities of caregivers, problems in finances and employment, the difficulties in dealing with patient’s dysfunctional and problem behavior, and the impact on caregivers’ physical and mental well-being.[1]

Long-term care for patients: Findings from Indian studies

A recent survey conducted among 4,935 patients hospitalized for more than 1 year in 43 state mental hospitals across 24 states reported that families admitted 33.1% of those institutionalized for the long term, and the police/magistrate admitted 55.4%, indicating homelessness.[8] The most common psychiatric diagnosis was schizophrenia, followed by psychosis not otherwise specified. Causes of long-term institutionalization included homelessness, families giving wrong addresses, patients not being able to recall their address, the reluctance of families to get the patient discharged, and no family member to discharge the patient.

In the Madras Longitudinal study, at the end of a 25-year follow-up of a cohort of 90 first episode persons with schizophrenia (ICD-9 criteria), two patients were in institutional care for social reasons (one in Schizophrenia Research Foundation and the other in Institute of Mental Health, Chennai) and 18 were lost to follow-up, including two patients who had wandered away.[9] Although this study highlights family/social support enjoyed by the cohort, many families preferred to care for the patient at home at the expense of disruption of family life and routines as admission into a mental health facility was more stigmatizing than caring at home.[9] It is a concern that 5% of the cohort had either wandered away or were institutionalized. The proportion of people requiring institutional care may have increased over time because of changes in the Indian society.

A qualitative study on caregiving for women with schizophrenia and broken marriages revealed that the family of origin shouldered a significant caregiver burden.[10] 60% of the families were bothered by the patients’ unpredictable behavior and expressed a need for constant supervision. Only 19% of the caregivers felt that support from the family helped in caring for the patient. Many caregivers (41.3%) could not take care of other family members because of caregiving responsibility. Some families kept the patient at home for social reasons and a strong sense of duty. Many of them preferred hostel-like facilities for long-term care and rehabilitation, believing it to be the best possible solution to the problem of “what after me.”[10]

Recent changes in the Indian family and its impact on caregiving

Over the decades, there has been a shift in the Indian family from a joint system to a nuclear one. Comparing the data over the last three National Family Health Surveys (NFHS), there is a progressive increase in nuclear families, more in urban areas, with an associated progressive decrease in household members.[11,12,13] As per NFHS-3, nuclear families account for 63% and 59.3% of household family structures in urban and rural settings. Further, many family members often migrate to another city or country for various purposes such as education or employment. In many cases, both men and women spend many hours for work outside their homes. Because of these factors, there is no family member at home to assume the caregiver’s role for a patient who is disabled and unemployed and requires supervision.

To provide continuous care to such patients, caregivers often adjust or leave their jobs, leading to financial stress and loss of the status and purpose. In several instances, family members are forced to make difficult decisions, including resigning from their job to assume caregiving as a career or looking for institutional placements for the patient who requires additional support beyond what the family can provide.

Influence of economic status on caregiving

In many low-income families, where the principal breadwinner can barely provide for hand-to-mouth existence, the patient’s care cost is significantly draining, and requirements such as regular follow-up and the cost of medicines have a considerable bearing. Although many families continue to support the patient despite difficulties, some families may either institutionalize patients in state mental hospitals or abandon them because of caregiver burnout. Without accessible and appropriate mental health care, the patient may wander away and become homeless.

The family with sufficient financial resources may be better positioned to care for the patient. Even when the family is financially comfortable, parents often worry about the long-term care of the patient after their lifetime.[14] If present, siblings may offer support, but if they are in a different city or country, their ability to help may be limited. If there is no other family member nearby and willing to care for the patient, families who can afford to pay may look out for long-stay residential facilities. The need for long-stay facilities often stems from either the lack of family members to care for the patient or family members having limitations in caregiving.

Long-term institutionalization in state mental hospitals

In a study conducted among female patients in a mental hospital for more than 1 year and attending daycare, the patients reported that they felt safe and secure in the hospital but had several other unmet rehabilitation needs.[15] The study authors concluded that supported accommodation, supported education, and supported employment are required to cater to patients’ complex rehabilitation needs instead of institutionalization in the hospital.[15]

The Mental Health Care Act (MHCA,2017) clarifies that a patient shall not stay back in the hospital as a default option for want of alternatives.[16] The Honorable Supreme Court order dated July 10, 2017 (Gaurav Kumar Bansal vs. State of Uttar Pradesh) has dealt with the need to set up rehabilitation homes for patients in state mental hospitals who have been cured, do not need further hospitalization, are homeless, and are not accepted by their families.[17]

The Government of India framed the Deendayal Disabled Rehabilitation Scheme (DDRS), Revised Guidelines with effect from 01.04.2018. The DDRS has provisions to create half-way homes for the psychosocial rehabilitation of ‘treated and controlled’ patients. The half-way homes shall function with a broader objective of providing vocational training to patients whose acute symptoms are well controlled and offering psychosocial support for patients and their families to facilitate re-integration with the family/society. Each half-way home/hostel can have a group of 25 inmates. A half-way home serves as a stepping stone to community re-integration, whereas a long-stay facility is meant to accommodate patients for life. Whether the half-way homes proposed under DDRS help patients move out of the facilities or get converted to long-stay facilities remains to be seen.

The Honorable Supreme Court (Gaurav Kumar Bansal vs. Mr. Dinesh Kumar and Ors), by its order dated February 25, 2019, has asked for status reports to be filed on affidavit by all the State Governments and Union Territories.[17] Furthermore, as per the recent honorable Supreme Court orders in response to a petition filed by Mr. Gaurav Bansal, it has been directed that PwMI who are homeless cannot be shifted to beggar homes or custodial institutions.[17] Furthermore, to make the transition back with the family a smooth process, the Government of India planned to create half-way homes beginning with a National Institute of Mental Health Rehabilitation in Bhopal, Madhya Pradesh.[18] Although the creation of “half-way homes” can be criticized as “trans-institutionalization,” they are likely to provide better opportunities for the community living than mental hospitals for long-stay patients.[19] These ‘half-way homes’ are limited to existing long-stay patients in state mental hospitals and not community patients. According to DDRS data available on the website of the department for the empowerment of persons with disabilities, grant-in-aid (2019–2020) was released to 12 half-way homes across the country, mainly in Karnataka, Madhya Pradesh, Orissa, Kerala, and West Bengal.[20] No funds were released for half-way homes in the 2020–2021 report.[20] This raises questions about the implementation of half-way homes under DDRS.

Long-stay residential rehabilitation facilities in NGO and private sectors

According to the National Mental Health Survey (NMHS) of India (2015–16), 69 mental health non-Governmental organizations (NGOs) are functioning across 12 states. In many states, the limited rehabilitation facilities (daycare centers, half-way homes, sheltered workshops, and temporary stay facilities) and personnel (social workers and counselors) were limited and mainly concentrated in cities or district headquarters. Most are located in the southern part of India.[21]

A few NGOs and private rehabilitation facilities offer residential rehabilitation facilities (half-way homes and long-stay residential facilities). Examples include facilities run by the Richmond Fellowship Society (RFS) (Bangalore, Delhi, and Lucknow), Medico-pastoral association (Bangalore), Cadabams (Bangalore), Spandana (Bangalore), Schizophrenia Research Foundation (Chennai), M S Chellamuthu Trust (Madurai), and Banyan (Chennai).[22] Caregivers may entrust such centers with the responsibility if they are comfortable with the facilities offered and the expenses involved. However, such facilities are limited and only cater to families with paying capacity.

Residential rehabilitation facilities in the Government sector

Family support movements have lobbied and successfully included ‘home-based rehabilitation’ and ‘provision of half-way homes, sheltered accommodation, supported accommodation,’ in clause 18 (4) of MHCA 2017 as a range of services required by patients for which sufficient provisions need to be made by the Government.[23] However, such services are practically non-existent in the Government sector.

The Mental Health Care (Rights of persons with mental illness) rules, 2018 define ‘half-way homes,’ ‘sheltered accommodation,’ and ‘supported accommodation’ facilities.[24]

• •“Half-way homes” mean a transitional living facility for persons with mental illness who are discharged as in-patients from a mental health establishment but are not fully ready to live independently on their own or with the family.
• •“Sheltered accommodation” means a safe and secure accommodation option for persons with mental illness who want to live and manage their affairs independently but need occasional help and support.
• •“Supported accommodation” means a living arrangement whereby a person in need of support who has a rented or ownership accommodation but has no live-in caregiver gets domiciliary care and a range of support services from a caregiver of an agency to help him live independently and safely in the privacy of his home.

In the future, the demand for long-stay residential rehabilitation homes is only likely to increase because of the factors mentioned above. Models of half-way homes and sheltered accommodation from NGOs [including ‘home-again’ like models initiated by Banyan (Chennai)] and supported accommodation provided by the Department of Psychiatry, Govt. Medical College and Hospital, Chandigarh, need to be replicated and evolved.

The expected beneficiaries of such residential rehabilitation facilities are likely to be persons with severe mental illnesses including schizophrenia, bipolar affective disorder, or schizoaffective disorder.[25,26] Management of acute issues such as violent behavior is ideally handled in an in-patient hospital setting with adequate resources. The residential rehabilitation facilities should cater to stable patients and provide the following services: meeting basic needs (including food, clothing, and shelter), medication supervision, day structuring, therapeutic engagement, skill training, socialization, and vocational rehabilitation.

What is the way ahead?

The Government should make caregiving less burdensome for the families by providing financial support, helping in rehabilitation, and offering support during crisis and respite care. Pathways should be established to provide better support to the family caregivers to encourage home care for the patients. Under the Aswasakiranam scheme, Kerala offers monthly assistance of Rs 600 to caregivers of persons with physical or mental disabilities.[27] A monthly caregiver allowance recognizes 24*7 care provided by the families and needs to be emulated by other state governments. Like disability pension, the quantum of monthly caregiver allowance may be decided by the respective state government based on available resources, the family economic status, and severity of the patient’s disability. Although monthly caregiver allowance will especially be helpful to families from a lower socio-economic status, whether it translates to better caregiving needs to be studied prospectively. Apart from financial assistance, the Government should facilitate psychiatric care from the nearest primary health centers and offer daycare facilities to reduce the number of patients requiring long-term residential care facilities.

There is a need to develop affordable long-stay residential rehabilitation facilities in the Government sector to cater to patients from lower and middle socio-economic statuses. The NHRC/NIMHANS report of 1999 documented a lack of cooperation between the ‘Ministry of Social Justice and Empowerment’ (MSJE) and the ‘Ministry of Health and Family Welfare’ (MOHFW). For the effective care of patients, there should be greater coordination between MSJE and MOHFW. The responsibility of establishing and running residential rehabilitation facilities should be with the MSJE.[19] As per the National Mental Health Survey 2015–16, the current prevalence of severe mental illness is 0.8%.[28] A third of them, especially those with schizophrenia, are likely to have a poor outcome with residual symptoms, repeated relapses, disability, and high family burden.[29] Assuming that 1% of patients with severe mental illness will need a residential rehabilitation facility, more than 1 lakh beds will be required.

In India, there is a real possibility that a “custodial” mindset may be replicated in residential rehabilitation facilities. The staff-patient ratio and supervision in such facilities are likely to be lesser than that in a mental hospital. The possibility of abuse or patients getting out of the facility and incarcerated cannot be ruled out.[19]

In this context, we should learn from the challenges of de-institutionalization in western countries. The rules and regulations for setting up community living facilities under RPWD Act (2016)(17;19) and MHCA (2017)(22) ensure a minimum standard of care. This should be ensured by providing adequate funds, infrastructure, and handholding of staff working in these facilities to facilitate “recovery,” liaison with all stakeholders, and ongoing monitoring.[19]

Reasons for caution

Although there is a need for such long-term care facilities, they come with their set of concerns. First, financial constraints could deter their usage if they run on a profit-based model. Second, compromise of care is possible because of a lack of adequately trained professionals. Third, such facilities may make families more readily opt for them instead of caring at home.

Because patient autonomy remains a priority, long-term care facilities where the same may be compromised should remain a last resort.

CONCLUSION

Although the NGOs and private sector offer residential rehabilitation facilities, they remain more accessible and affordable to patients from a higher socio-economic status.[30] Developing residential rehabilitation facilities for patients from lower and middle socio-economic statuses is the Government’s responsibility. Given paucity of viable, replicable, and affordable models of residential rehabilitation centers, there is a need for more Indian research in this field.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.