© Springer India 2015
Savita Malhotra and Subho Chakrabarti (eds.)Developments in Psychiatry in India10.1007/978-81-322-1674-2_3030. Rehabilitation Psychiatry
(1)
Department of Psychiatry, Government Medical College and Hospital, Chandigarh, India
Keywords
RehabilitationMental illnessIntellectual disabilityIndiaB.S. Chavan, Professor and Head; S. Das, Assistant Professor
1 Introduction
Psychiatric rehabilitation or ‘psychosocial rehabilitation’, as it is now frequently termed, has been variously defined. The scope might include achieving social integration by reducing the impact of disability and handicapping conditions through various measures (WHO 1980), improving the capabilities and competence of a person suffering from mental illness through improvement in their environment (Anthony et al. 1984), helping a person to adjust to their deficits by using residual abilities (Benett 1978), or a therapeutic approach that encourages a mentally ill person to develop to his or her fullest capacity through learning and environmental support (Bachrach 1992).
In 1996, the World Health Organization (WHO) and the World Association for Psychosocial Rehabilitation (WAPR) jointly came out with a ‘consensus statement’ on psychosocial rehabilitation. This statement defines psychosocial rehabilitation as a strategy that facilitates the opportunity for individuals impaired or disabled by mental disorder to reach their optimal level of functioning in the community, by improving individuals’ competencies and introducing environmental changes.
The essential elements of all rehabilitation programs are similar (Bachrach 1992):
(a)
Enable a person with mental illness to develop to the fullest extent of their capacities despite the existence of mental illness.
(b)
Rehabilitation has to happen in the context of the individual’s environment.
(c)
Rehabilitation is directed towards exploiting the individual’s strength.
(d)
Restoration of ‘hope’ for those with mental illness is a distinctive feature of rehabilitation.
(e)
Optimism about vocational potential of people with mental illness.
(f)
Reaching beyond work activities to cover other concerns of individuals.
(g)
Active involvement of individuals and primary caregivers.
(h)
Maintaining continued care.
(i)
Establishing a strong relationship between patient and the caregiver.
People with psychiatric disabilities also have the same life aspirations and wishes as people without disabilities. They do desire to have their own houses, choice of education, career, social relationship, participation in community activities with equal rights and so on.
The overall philosophy of psychiatric rehabilitation in mental disorders comprises of two intervention strategies—individual–centred strategies and ecological strategies. Individual-centred strategies are aimed at developing patients’ skills in interacting and handling the stressful environment, while ecological strategies are directed towards developing environmental resources to reduce potential stressors. Most of the persons with disability need a combination of both these approaches (Rossler 2006).
2 Steps in Psychiatric Rehabilitation
The starting point for an adequate understanding of rehabilitation is that it is concerned with the individual person in the context of his or her specific environment and is carried out under real-life conditions. Thus, rehabilitation practitioners have to take into consideration the realistic life circumstances that the affected person is likely to encounter in his or her day-to-day living (Bachrach 2000). The second step is helping the disabled person to identify their personal goals. This is not a process where the person simply lists his needs. Motivational interviews provide a better approach to identify the individual’s personal costs and benefits associated with the needs (Corrigan et al. 2001). Assessing the individual’s readiness for change is also required (Rogers et al. 2001; Liberman and Glick 2004). Subsequently, the focus of rehabilitation process is on the patient’s strengths (Bachrach 2000). Irrespective of the degree of psychopathology in a given patient, the therapist must work with the ‘well part of the ego’ as ‘there is always an intact portion of the ego to which treatment and rehabilitation efforts can be directed’ (Lamb 1982). Often those with disabilities lack not only confidence, but also hope and so rehabilitation should also focus on restoring hope to such people. As Bachrach (2000) states, ‘it is the kind of hope that comes with learning to accept the fact of one’s illness and one’s limitations and proceeding from there’.
Psychiatric rehabilitation cannot be imposed. The individual’s right as a respected partner and endorsing his or her self-determination concerning all aspects of the treatment and rehabilitation process is important. The rehabilitation values are also incorporated in the concept of recovery (Farkas et al. 2005). Within the concept of the recovery, the therapeutic alliance plays a crucial role in engaging the patient in his or her own care-planning (Priebe et al. 2002). In addition to working with the patient, engaging the family in recovery planning is very crucial, more so in the Indian context where the family is closely involved in the recovery path. Research has also shown that social support is associated with recovery from chronic diseases, greater life satisfaction and enhanced ability to cope with life stressors (Rogers et al. 2004). Corrigan et al. (2005) have found that the most important factor facilitating recovery is the support of peers. Therefore, psychiatric rehabilitation is also an exercise in network building (Cutler 1985).
Finally, people with mental disorders and their caregivers prefer to see themselves as consumers of mental health services. This consumerism allows for due consideration of the affected persons’ perspective and to seriously consider courses of action relevant for them (Kopelwicz and Liberman 1995). In this context, physicians should also acknowledge that disagreement about the illness between themselves and the patient is not always the result of the illness process (Bebbington 1995). Unlike the West, there is very little effort in our settings to engage the patient and his caregivers in the treatment planning, including rehabilitation. However, the consumerism movement and the rights-based approach have started making inroads in India and the families and patients, through self-help groups have started verbalising their needs and rights. In the experience of authors, the compliance and retention into care is better when the family was allowed to participate in treatment planning.
3 Role of Government in Rehabilitation and Recent Initiatives
3.1 Persons with Disability Act and Development of the Indian Disability Evaluation and Assessment Scale
The recognition of disability due to mental disorders came very late in India. Disability due to mental disorders was officially recognised for the first time when it was included as one of the disabilities in the ‘Persons with Disability Act (PWD Act)’ in 1995. Before this Act, care of the disabled as a whole was treated as a charity by the government and the civil society. They received whatever was left out after fulfilling the needs of so-called abled people, whose greed left very little for the persons with disability and the underprivileged. The PWD Act of the Ministry of Social Justice and Empowerment, Government of India, has been rated as the most powerful Act in the field of disability. It has restated that the persons with disability have similar rights and the government is duty bound to protect these rights. The most significant among these is the protection of employment. In addition to 3 % reservation in jobs (1 % each for physically, visually and hearing impaired), if a person acquires disability, including disability due to mental disorders, he or she cannot be removed from the job and will continue to get all the benefits including promotion and increment, at par with other employees. If a department does not have jobs where the person with disability can be engaged, he can be adjusted in other departments. The person with disability will retire at the due time. Before this Act, many patients suffering from major mental disorders used to hide their illness fearing loss of their jobs. The facilities and concessions under Persons with Disability Act such as income tax rebate up to rupees 75,000, concession in rail travel along with escort, free travel in the state roadways buses, free assistive devices, provision of passing on the family pension to persons with disability, and disability pension have helped many persons with disability. The Act also provide safeguards for protection of rights and any discrimination against a person with disability, such discrimination can be reported to the State Commissioner for Disability, who has been given judicial powers to summon a person and announce punishment, if found guilty. For availing any benefit under the disability category, the disability certificate is a must which should indicate the type and degree of disability.
Initially, there was no tool to assess the degree of disability caused by mental disorders. Thus, the persons suffering from mental disorders were deprived of these benefits. This vacuum was filled after the development of the screening tool called the ‘Indian Disability Evaluation and Assessment Scale’ commonly referred to as the ‘IDEAS’. The task for developing this tool was initiated by the Indian Psychiatric Society (IPS) and a tentative instrument formed was field-tested in eight centres all over the country with the Schizophrenia Research Foundation (SCARF) being the coordinating centre. The IDEAS was gazetted by the Government of India, Ministry of Social Justice and Empowerment, in February 2002 as the official instrument to measure psychiatric disability for the purpose of certification. Assessment with the IDEAS can be done by trained social workers, psychologists or occupational therapists, while the diagnosis and certification can be done by a psychiatrist only. This was thus a giant step towards rehabilitation of people with mental illness in India. The IDEAS gave importance to functional disability, rather than diagnosis alone. The disability score obtained after assessing personal care, communications, social interactions, work and duration of illness can be converted into percentage of disability.
The National Trust Act, 1999: The National Trust Act is also a landmark legal provision for the care and rehabilitation of persons with intellectual disability, autism, cerebral palsy and multiple disabilities. The Act has made it easier to appoint a guardian once the person has become major (more than 18 years as per our constitution). Instead of going to court, a local-level committee (LLC) at each district, consisting of the deputy commissioner, a person with disability and a parent representative of an NGO registered with the National Trust has been given semi-judicial powers to appoint a guardian. The LLC has powers to remove the guardian in case it is found that the guardian is neglecting the person with disability or not utilising the funds of this person properly. The guardian is supposed to file an annual return of all transactions to the satisfaction of the LLC. The parents of these children had a fear that their relatives and family members will grab the property and money after their death. After enactment of this Act, they are now satisfied that somebody is there to safeguard the interest of their wards, when they will be no more in this world. The National Trust Act has also created residential facilities for women, orphaned mentally challenged and ‘below poverty line’ families with a person suffering from any of the four disabilities in the name of SAMARTH. The emphasis of the National Trust Act is on family living, through empowerment of persons and their families through specific training programmes.
The Rehabilitation Council of India: Another landmark initiative by the government was the establishment of the Rehabilitation Council of India. The Parliament enacted the Rehabilitation Council of India (RCI) Act in 1992 to give powers to the Rehabilitation Council of India for regulating the training of rehabilitation professionals and maintenance of a central rehabilitation register for their registration and related matters. The vision of the body is ‘to provide quality services to persons with disabilities, matching with the best in the World’. The RCI Act was amended in the Parliament in 2000 to make it more broad based. Thus, disability due to mental illness was included within the purview of RCI in 2000. Similar to the role of MCI in regulating the standard of medical education in the country, the RCI Act develops curriculum for various courses in the field of disability, inspects the institutions desirous of starting the course and supervises the examination standard.
4 Rights of Persons with Disabilities and the UNCRPD
The United Nations Convention on Rights of Persons with Disabilities (UNCRPD) was indeed a silver lining for the persons with disabilities, which clearly emphasised on the rights and privileges that this section of people should enjoy. The rights and privileges of people with various disabilities in general, and those with mental illness in particular, can be described aptly through an understanding of the UNCRPD. The UNCRPD was adopted by the United Nations General Assembly on 13 December, 2006 and was opened for signature on 30 March 2007. It came into force from 3 May, 2008. It is unique in the sense that it is both a development and human rights instrument. It is cross-disability and cross-sectoral and is also legally binding. India ratified the UNCRPD on 1 October, 2007. India was the 7th country in the world and one of the important countries to do so. The Convention sought to ensure equality and non-discrimination of the disabled people.
The following rights in the Convention have tried to bring those with disability at par with persons without disability:
1.
Equality before the law without discrimination (Article 5)
2.
Right to life, liberty and security of the person (Articles 10 & 14)
3.
Equal recognition before the law and legal capacity (Article 12)
4.
Freedom from torture (Article 15)
5.
Freedom from exploitation, violence and abuse (Article 16)
6.
Right to respect physical and mental integrity (Article 17)
7.
Freedom of movement and nationality (Article 18)
8.
Right to live in the community (Article 19)
9.
Freedom of expression and opinion (Article 21)
10.
Respect for privacy (Article 22)
11.
Respect for home and the family (Article 23)
12.
Right to education (Article 24)
13.
Right to health (Article 25)
14.
Right to work (Article 27)
15.
Right to adequate standard of living (Article 28)
16.
Right to participate in political and public life (Article 29)
17.
Right to participation in cultural life (Article 30).
Thus, the Convention set out to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.
5 Facilities for Rehabilitation in Psychiatry
Half–way homes: A half-way home is a rehabilitation facility for individuals suffering from mental illness or substance use disorder who no longer require the complete facilities of a hospital, or other institutions, but who are not yet prepared to return to their communities. Half-way homes assist persons who have left highly structured institutions and are preparing to re-enter the society. These persons need to re-learn the societal norms, which they lost or failed to acquire due to mental illness. The intervention is targeted at improving social and inter-personal communication and to provide vocational training. In India, many half-way homes have come up, all established by NGOs. Some of the well-known ones are Richmond Fellowship India (Delhi and Bengaluru), Roshni (Guwahati), Paripurnata (Kolkata), Banyan (Chennai) and many others (Chavan et al. 2012a).
In Chandigarh, the Department of Psychiatry, Government Medical College, is running a half-way home for the chronic mentally ill patients. The patients are accepted on the recommendation of consultant psychiatrists. They are looked after by a trained and experienced medical social worker along with a caregiver. In fact, this half-way home is a joint venture of the department and a self-help group called ‘Prayatan’, which is formed by the family members of the patients. The facility is directly supervised by a faculty of the department. Transport facilities are also provided to the patients on nominal charges. Once the patient is admitted to this facility, a base-line assessment of dysfunction is done using the ‘Dysfunction Anlysis Questionnaire’. The assessment is carried out again at the end of 3 months to find out the progress. During their stay in the half-way home, each patient is expected to participate in regular activities such as yoga, exercise, helping in the kitchen, nursery and gardening and envelope making. Vocational activities such as painting earthen lamps and making greeting cards are also undertaken for specific occasions such as Diwali and New Year. Additionally, there are daily activities, which include games, art competition, telling stories and singing songs. These daily activities are planned well ahead in the form of ‘monthly activity’. Every day the patients are awarded ‘token points’ on the basis of their performance and participation. At the end of every month, the top three patients on the basis of their total points are awarded trophies, and their photographs and products are displayed in the home for next one month. Although, no formal assessment has been carried out to see the effectiveness of these facilities, the personal experience of the staff involved in the regular care of patients suggests that these facilities promote recovery and thus play an important role in rehabilitation.
Self–help groups (SHGs): Self-help groups (SHGs) are voluntary, small groups of persons facing similar problems, who come together for a special purpose. They are usually formed by caregivers who come together for mutual assistance for satisfying a common need, overcoming a common handicap or life disrupting problem. The initiators and members of such groups perceive that their needs are not addressed by existing government programmes and social institutions. Self-help groups emphasise face-to-face social interactions and the assumption of personal responsibility by their members. They often provide material assistance, as well as emotional support; they are frequently cause-oriented, and ‘promulgate an ideology or values through which member may attain an enhanced sense of personal identity’. This definition, provided by Katz and Blender (1976), is possibly the most comprehensive definition of self-help groups (Chavan et al. 2012b).
The concept of SHGs originated in the West in the late nineteenth century. SHGs are involved in solving the practical problems and psychological sorrows of sufferers (Lock 1986) and are involved in curative, preventive, promotional, palliative and rehabilitative services (Nayar et al. 2004). SHGs are complementary to medical services and not substitutes to medical treatment (Moeller 1983). A characteristic of SHGs is that their members are service providers as well as receivers.
The effectiveness of SHGs is not easy to find out, and the evidence in their favour is, at best, equivocal. The members of the Alcoholic Anonymous (AA) have often claimed to have maintained abstinence for significant durations. Studies in India have also shown that among a cohort of 187 AA attendees at baseline, at one year, and at 5 years, the sobriety rate was 33.3 and 16.5 %, respectively (Kuruvilla et al. 2004; Kuruvilla and Jacob 2007). Systemic studies such as reviews and meta-analyses have also failed to give a clear picture. A literature review published in 2008 (Groh et al. 2008) argued for their effectiveness. Proponents of SHGs, however, reject attempts to make self-help ‘evidence-based’, stressing the need to understand health in a holistic way (Nayar et al. 2004). Moreover, evidence, which supports the positive role and good results achieved by self-help groups in the overall improvement of the mentally ill, does exist (Galanter 1988; Kennedy 1990; Kurtz 1988; Lieberman et al. 1979; Powell et al. 2000; Raiff 1984; Roberts et al. 1999). In Chandigarh, the Prayatan is a SHG of families of mentally ill persons, who got registered as a NGO, and are working closely under the guidance of the Department of Psychiatry, GMCH. This group has taken up few projects which are complimentary to the facilities provided by the department.
Day care centres and rehabilitation centres: These are meant for patients who can visit the centres and attend the available services regularly. The Schizophrenia Care and Research Foundation (SCARF) runs a day care centre at Chennai, which has about eighty regular patients. The ‘Chetna’ is a day care centre run by the Richmond Fellowship Society at Bengaluru and serves the needs of forty-five patients. The day care centres run by the Richmond Fellowship Society give admission to any person between 18 and 45 years of age with a diagnosis of schizophrenia, or any other major psychiatric disorder, or mild mental retardation. The facilities available include vocational training units for using computers, typing, printing, plastic moulding, tailoring and embroidery, arts and craft, yoga, vocational and instrumental music, dancing, painting, and vocabulary building. In addition to vocational training, the centre has therapeutic programmes such as structured daily activities and afternoon group activities, namely community meetings, group therapy, recreational activities such as going to movies, picnics, group games and horticultural activities. Regular individual and family therapy sessions and family support group meetings are also provided. The period of stay of members is generally up to 18 months. Therapeutic services are provided by a team of counsellors from the field of social work and psychology (Ponnachamy et al. 2005). At the ‘Banyan’, wandering mentally ill women on the streets are brought to the shelter and clinically assessed by a psychiatrist and put on medication. Various therapies are available such as individual counselling, music, art, yoga and vocational training (candle making, greeting cards, block printing on napkins, table linen, basket making, threading flowers and making bouquets, etc.). The inmates are entrusted with some housekeeping responsibilities and also take care of other residents. They are given an opportunity to attend meetings for a limited audience, to speak for their cause of inclusion. Recreation includes outings to the beach, movies, celebrating festivals and sports. As the inmate improves, her family address is elicited and traced. The family is educated about the illness, the woman’s stay at the Banyan and the need for continuous medication. The duration of stay at the Banyan varies from less than 3 months to more than 3 years (Rao 2004).
6 Role of NGOs
Non-governmental organisations (NGOs) are institutions, recognised by governments as non-profit or welfare-oriented, which play a key role as advocates, service providers, activists and researchers on a range of issues pertaining to human and social development (Thara and Patel 2010). Currently, about 50–75 % of specialised mental health services are provided by the government sector and about 33–50 % by private sectors. Only 2–3 % of services are provided by NGOs (Desai et al. 2004; Arun et al. 2012). However, the facilities provided by NGO’s might be much more in the field of rehabilitation. The mental health NGOs (MHNGOs) such as the SCARF have played an important role for patients with schizophrenia, providing facilities such as day care centres, residential centres, and even long-term care for some of the chronically ill. MHNGOs, such as the National Addiction Research Centre of Mumbai, also provide drug de-addiction services for the urban poor. In Chandigarh, ‘Umeed’ has been involved in rehabilitation of the mentally challenged persons for quite some time. In addition to these specific services provided to certain groups, the MHNGOs also provide domiciliary care, community-based programmes through community outreach clinics and suicide prevention services. Some of the MHNGOs have developed models of care and rehabilitation, which are replicable in diverse settings. The absence of trained staff to carry out psychosocial rehabilitation has led to the development of different modules of psychosocial rehabilitation in urban as well as rural settings by these MHNGOs. Activities carried out by these MHNNGOs towards rehabilitation include individual and group counselling, vocational rehabilitation and livelihood skills training, self-help groups, and recreation and leisure activities. Specific interventions for children and the elderly are also provided by these MHNGOs (Thara and Patel 2010).
7 Interventions for Specific Deficits in Mental Disorders
A person with mental illness, especially with severe mental illness, may have deficits in cognition, social skills as well as vocational skills. Often the deficit is in more than one area, severely affecting their quality of life. However, intervention strategies can be devised to help the individuals overcome these deficits.
(a)
Cognitive Skill Deficits
Neurocognitive dysfunction has been postulated as a core deficit in many major mental illnesses. Individuals with schizophrenia present severe impairments in attention, executive functions, working memory and processing speed. Studies have suggested that patients with other psychotic disorders could also demonstrate a disruption of normal cognitive performance, but results have not always been consistent (Reichenberg 2010). Two recent studies (Zanelli et al. 2010; Reichenberg et al. 2009) involving large epidemiological samples have compared neuropsychological functioning between psychotic patients with a diagnosis of schizophrenia, bipolar mania and depressive psychosis and have shown that differences in neuropsychological performance between schizophrenia and other psychotic disorders are quantitative and not qualitative. Cognitive deficits are present in all psychotic disorders, but are most severe and pervasive in schizophrenia, and least so in bipolar mania. Schizophrenia and mood disorders are characterised by deficits in various domains of cognition, e.g. learning memory, working memory, executive function, attention, verbal fluency and information processing. Cognitive disturbances are considered a major determinant of social outcome (Sumiyoshi 2012).
Assessment of Neurocognitive DeficitsStay updated, free articles. Join our Telegram channel
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