|SYMPOSIUM (THEME SECTION: CAREGIVING AND CAREGIVERS)
|Year : 2016 | Volume
| Issue : 1 | Page : 28-34
Civic and legal advances in the rights of caregivers for persons with severe mental illness related disability
Hareesh Angothu, Santosh K Chaturvedi
Department of Psychiatry, NIMHANS, Bengaluru, Karnataka, India
|Date of Web Publication||17-Feb-2016|
Dr. Hareesh Angothu
Department of Psychiatry, NIMHANS, Bengaluru - 566 029, Karnataka
Source of Support: None, Conflict of Interest: None
Caregivers for persons with disabilities are very important in the process of recovery and rehabilitation, irrespective of the cause of disability. Their services are equally important as of the health professionals. Often it is the caregivers who bear the major burden by assisting for daily needs of persons with disabilities apart from providing financial and social supports to their dependant persons with disabilities. In the process of caregiving they may have to forego their opportunities to attend work of their choice, to earn money, to progress in career, to spend satisfactory social life, and even to spend time leisurely. Yet, the informal caregiving process and the caregivers as a service provider, for persons with disabilities, have received less attention from civic societies and various state systems. However, change of paradigm of caregiving process as family responsibility to society's collective responsibility and a stronger voice of caregiver associations has brought certain recent changes in this field. There are few governments who have recognized the importance of caregivers for their informal services and sacrifices and started providing benefits for them, thus caring for the caregivers. We review and discuss such policies and regulations which protect the rights of caregiver in this article.
Keywords: Caregiver, civic advances, legal rights
|How to cite this article:|
Angothu H, Chaturvedi SK. Civic and legal advances in the rights of caregivers for persons with severe mental illness related disability. Indian J Soc Psychiatry 2016;32:28-34
|How to cite this URL:|
Angothu H, Chaturvedi SK. Civic and legal advances in the rights of caregivers for persons with severe mental illness related disability. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 Jun 20];32:28-34. Available from: http://www.indjsp.org/text.asp?2016/32/1/28/176764
| Introduction|| |
Historically, setting for treatment of persons with mental illness has moved from asylums and institutes. Prolonged institutionalization and poor conditions affecting the rights of persons in such institutes have led to another movement in 1960s called deinstitutionalization, where in the emphasis of treating persons with mental illness was within the community rather than as inpatient. This was also due to the introduction of psychotropic drugs apart from concerns about the rights of persons with mental illness.  With the deinstitutionalization, the need for more or less constant care for the persons with mental illness, by the family caregivers has emerged. When caregivers started taking care of the patients, in addition to the emotional distress associated with caregiving, they also started feeling distressed with little social and government support systems.
Financial burdens both due to patient illness related factors and difficulties in maintaining job due to caregiver burden, started affecting the quality of life, and there is much literature on caregiver burden and poor quality of life in caregivers. A complex interaction of person's ability to provide long-term care for disabled, expectations about the caregiver by the society, available social and financial support systems depending on the cultural norms will determine the amount of burden and perceived quality of life in these caregivers.
| Definitions and Concept of Care Giving|| |
A caregiver is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem, or an addiction cannot cope without their support. Swanson et al. defined family caregiving as: "Provision by a family care provider of appropriate personal and health care for a family member or significant other."  In this article the term "caregiver" is an informal unpaid caregiver caring for a person with disability, who can be a family member or close relative or friend. The term carer is more often used in the United Kingdom and Australia, whereas the term caregiver often is used in Canada and the United States of America (USA).
| What a Caregiver Does?|| |
Services provided by the caregiver depend on the cause, severity, social support, and moral expectations from the society. Apart from helping the patients in recovery, many times they may have to look after the financial, social needs, and personal needs of the patient including hygiene. Services by caregiver also depend on the cultural context and locally available support systems. Working with caregivers reflects stages of caregiving stress and burnout as mentioned below.
| Stages of Care Giving|| |
- Stage of joy, duty, enthusiasm, and purpose. This is the initial reaction and stage and may last for a variable period
- Stage of boredom when caregiving becomes monotonous, a chore to be done; there is no joy or enthusiasm
- Stage of fatigue. The caregiver feels tired and fed up, caregiving becomes a burden, and the caregiver tries to avoid the situation; it is like a brown out
- Stage of burn out. The caregiver feels depressed or has no feelings, gets detached, has depersonalization, emotional exhaustion, sleep, appetite, occupational, and social functioning affected.
| Burden Related to Care Giving|| |
Sociodemographic studies revealed that women were more likely to be informal caregivers than males. Recent changes in health care policies for early discharge and community-based treatment for various reasons has led to more women to be as informal caregivers.  Though often it has been noticed that informal caregivers report higher complaints of poor health, no significant difference in terms of mortality in caregivers was noticed.  Burden related to caregiving for persons with schizophrenia was found to be more than for caring for persons with affective disorders and mental retardation. 
| Care Giving in Persons with Mental Illness versus Persons with Physical Illness|| |
The tasks of a caregiver might be more challenging particularly when they care for persons with mental illness. As mental illnesses often start at younger age, the overall burden can be even more. This can also be challenging due to the issues of autonomy and right to refuse treatment in persons with mental illness. Lack of insight in person with mental illness about the condition causing disability and can pose additional burden on caregivers. Persons with mental illness may abuse and assault the caregiver depending on symptom severity, which can frustrate the caregiver. Legal proceedings to admit the person under involuntary category can be tiresome. Arunima and Rajnee observed that caregivers of psychiatric patients were having more distress, more frustration, more sadness, less comfort, and more disruption in their daily routine activities in comparisons to the caregivers of cancer patients. 
| Assistances Sought by Caregivers|| |
Often it is the needs of the care recipient which defines the type of service or assistance sought by the caregiver. Caregivers for children with intellectual disabilities felt the requirement of early intervention services and respite care services, whereas the caregivers for dementia person sought more of information services and respite care. Whereas, when the caregivers themselves were elderly they sought more of financial assistance and social support.
| Civic Advances which Lead to a Better Caregiver Support System|| |
There has been a significant change in understanding the concept of caregiving model, and its impacts including its economic impacts. This was mainly due to understand the issues of loss of productivity on the caregiver due to the process of caregiving. This is also due to the understanding that the government needs to spend unusual amounts to provide for the physically challenged, if family caregivers were not there. Better research findings and data about the impacts of caregiving and strong voices by the associations of caregivers such as in Australia, the USA, and the United Kingdom has lead to changes in social perspectives and legislations.
| Economic Impact of Informal Care Giving|| |
Arno et al. observed that the value of informal caregiving for all disabilities in the USA was $196 billion which was higher than the combined formal national health care expenditure and nursing home care which was calculated to be $114 billion.  We could not come across any studies which particularly looked at the economic value of caregiving in specific mental illnesses. However, this figure itself tells us the economic importance of informal caregiving.
| Support Systems to Care Givers for Persons with Mental Illness|| |
Majority of the support systems for caregivers are for those who care for persons with physical disabilities. Among the mental illnesses, majority of support systems were for caregivers those who care dementia patients and children with intellectual disabilities.
| Need for this Review|| |
In India, though there are few benefits to caregivers are being provided, like tax exemptions and travel benefits, there is so separate funding agency or department under Government of India (GOI) which primarily intends to help these informal caregivers. 2.68 crore people are having one or other disability as per census 2011, which means, these many are dependent on others for their needs As per this census, 22 lakhs were having more than 40% disability due to either mental illness or mental retardation.  This simply states that an additional 2.68 crore people in India might have difficulties in their lives to provide care for these people. There are no detailed studies or reviews which looked at the lost work hours or lost national productivity in India due to the process of caregiving for persons with disability (PWD). There is a greater need for reviewing the existing legal and civic support systems for these caregivers in India and in comparisons to other nations, as it helps in planning for improvising the existing systems. This kind of reviews would be initial and important steps in moving forward for better policies for caregiver in our systems.
| Review Methods|| |
A PubMed search of different combinations of keywords "caregiver," "mental illness," "legal," "civic," and "rights" in abstract or title was done, which did not yield any article. Search using the keywords caregiver rights and mental illness either in abstract or title was carried out, and it yielded two articles. Abstracts of these articles were reviewed and it was observed that neither them were related to the rights of caregivers for persons with mental illness. , A further search with key words "informal caregiver," "rights" yielded 16 articles. These were either opinions or studies or reviews. Of all these 16, none was related to legal rights of caregivers. In few of these articles, however, there is some mention about the requirement of such policies.
Frericks et al. compared the elderly care policies in Denmark, Germany, and the Netherlands. In these family care policies, an elderly care seeker can choose a family caregiver and welfare states will support the caregivers.  Chan and O'Brien reviewed the challenges posed by Ontario personal health information protection act of Canada. In this article, the caregiver rights in terms of access to information pertaining to patient health status were discussed. The issue of privacy and confidentiality can be significant barriers in engaging family caregivers in patient care.  Jorgensen et al. studied the unmet needs of informal caregivers in New Zealand. It was felt that informal caregivers were not getting adequate respite support, reliable information, and financial assistance. Informal caregivers responded that they were not getting recognition for their services by the system.  Mauduit and Sayn have opined that there are inadequate legal measure for protecting the rights of caregivers, for those who provide care for dementia. 
| Civic Advances in the Rights of Care Givers|| |
One of the important civic advances in this area is that caregivers have started forming associations sometimes based on the type of condition causing disability and sometimes the geographical areas of their living. The formation of associations has helped caregivers in raising awareness of burden and loss of productivity, associated with informal caregiving process.
National alliance on mental illness formed in 1979 in th USA, though not a typical caregiver association, it helps in educating the people about mental illnesses, empowering them, advocating them, as well as policy makers toward a better society. There are many caregiver associations like Canadian Caregivers Association, European Federation of Families of People with Mental Illness (EUFAMI), children of parents with mental illness, and Carers Association Queensland. EUFAMI has a membership from 26 countries and advocates the policy makers about the needs of caregivers.
| Indian Scenario in Terms of Civic Advances|| |
In India also in the past two decades, caregivers for persons with developmental delays and mental illnesses have formed association like Autism Society of India, Alzheimer's Association, families Alliance on Mental illness (facemindia), Schizophrenia Awareness Association, and several other nongovernment organizations (NGOs) with caregivers as partners. These are now actively advocating the policy makers about the needs of persons with mental illness as well about the needs of caregivers for persons with mental illness. These caregivers associations have played an important role in changing the paradigm of the civic society of viewing caregiving as private and family responsibility to collective social responsibility. These associations acted as platforms for knowledge dissemination pertaining to mental illness, rights of persons with mental illness, and also about the support systems and services available to the caregivers. Several NGOs and caregiver associations are instrumental in India in raising awareness about mental illnesses and about existing policies and support systems to care for both patients with mental illness and their caregivers. Civil society's perspectives about caregiving process and about caregivers have changed a lot due to these associations' awareness programs, factual information dissemination to the public, and propagating the success stories of recovered persons from mental illness. Several NGOs catering to the needs of physically challenged persons due to mental illness and caregivers were active and vocal in advocating the polices for Newly Proposed PWD Act 2014 in India. Chapter V, Section 29, clause 2(i) of the PwD draft biil,2012 mentions about the caregiver allowance which suggests that GOI has considered the loss of work to caregiver due to the process of caregiving.  However, this could not be found in the draft PWD Act 2014. Section 8, of this bill, states that unless the competent court decides the person with special needs should not be separated from a parent. Which means that onus of caregiving is parent's private responsibility but this bill remains silent on the kind of respite services or other support systems available to these caregivers.  As of now there is no mention of any caregiver support system and or allowance in the existing PWD Act 1995.
| Existing Literature about Legal Rights of Caregivers' for Persons with Mental Illness|| |
As of now, we could not find any studies comparing the benefits for caregivers across countries or review articles pertaining to legal and civic advances of the rights of caregivers for persons with mental illness. A report prepared on informal caregiving and submitted to the National Health Committee could be traced in which the policies in New Zealand and impacts of caregiving were discussed.  Hence, we thought of alternative search method, i.e., searching the websites of ministries of social welfare and health care with the keywords of caregiver benefits and rights.
| Regulations and Legal Rights for Caregivers - Global Picture|| |
United States of America
The Family and Medical Leave Act provides certain employees the right to 12 weeks of unpaid, job-protected leave per year to the caregiver.  In certain states of the USA the insurance Medicaid Company provides benefits for family caregivers. The USA Department of Health and Human Services provides assistance to the caregivers by various programs through National Family Caregiver Support Program. Important service provided through this is respite care for caregivers.  Though there are several government programs for caregivers there is not much emphasis on caregiving for mental illness. Only dementia is one mental illness which received support from government for caregivers
Canadian Government is providing assistance to caregivers for persons with disabilities in many ways which range from caregiver job protection by unpaid leave to providing money to caregiver including savings on tax returns.  The condition causing disability can be physical or mental impairment and as such there are no separate regulations concerning the rights of caregivers for persons with mental illness. Compassionate caregiver benefit (CCB) is a scheme in which, money would be provided to the caregiver based on a calculation of loss of income due to caregiving process by a detailed method in which both interruption in earnings and insurable weekly earnings would be calculated based on their previous year earnings.
In Canada, they use the concepts of interruption in earnings. A reduction of the time usually devoted to one's business or job by more than 40%, if it is as a result of events like illness, injury, pregnancy, or the need to care for someone, it would be considered for CCB. To be eligible for financial assistance, the caregiver should provide at least 20 h per week caregiving. In the Province of Nova Scotia, Canada, a caregiver allowance of $400 will be paid after assessing the needs of person with impairment and net family income of the caregiver. The entire process will be monitored by the Department of Continuing Care.  A maximum of 6 weeks of compassionate care benefits may be paid to eligible people. The goal of the CCB is to enable employees to take a temporarily secured leave from work to provide care or support to a gravely ill family member at risk of dying. As per this provision, the caregivers can get up to $524 per week. During this period, they should not be in full-time employment. However, they can do part time job where their earning cannot be more than $50 per week. More importantly the family members can share this CCB, so that they can rotate the caregiving at the same time being supported financially by the government.  Employment insurance benefits are paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death within 26 weeks (6 months). Even if the care giver is self-employed, based on the previous year earnings divided by 52 they would calculate the caregiver earnings and accordingly a CCB would be calculated.  Caregiver can claim the caregiver amount on tax return from $4608-$6701 depending on the income of the physically challenged and caregiver and net income of the family.
Family caregiver leave and family medical leave
In British Columbia Province of Canada, under Employees Standard Act 2000, since 2006, family caregiver leave is job-protected and unpaid leave for eight weeks duration per calendar year can be availed periodically or consecutively, in serious conditions wherein the family member has significantly increased the risk of death in the next 26 weeks.  This leave is just like pregnancy leave, or parental leave and family member can be spouse or sibling or grandchild or grandparent as per the ESA act. In the case of a critically ill child, the caregiver can take a maximum of 37 weeks of leave under this act. 
Carer's allowance, an earnings replacement benefit, is the main benefit for carers. A caregiver will be eligible if they are looking after someone for 35 h a week or more. Carer's allowance is ≤62.10 a week to help to look after someone with substantial caring needs. 
There are legislations in this regard like the Carers Act 1995 and the Carers Act 2004. As per these, there are systems in place for the assessment of caregiver support requirements and different benefits would be provided including weekly payment almost similar to England.
Carers in Scotland are regarded as "partners" in the provision of care. Because of this support services provided to carers are regarded as a part of the overall package of care to the person being looked after. This is important as in this system it tells us that carers are not service users, and they are not responsible for the cost of overall package. A carer assessment would be made by the local social department and caregiving an allowance of ≤62 per week would be paid, for carers, who care for persons with substantial needs.  Two important legislations in Scotland pertaining to carers are a strategy for carers in Scotland 1999, and Community Care and Health Scotland Act 2002.
The long-term care insurance is a mandatory social insurance scheme funded by employer and employee contributions. This scheme supports family caregivers by the provision of cash payment. Caregivers are also eligible for getting their skills enhanced by skill training program and up to 4 weeks respite care in a year. An assessment-based three categories will be made for benefit calculation and accordingly monetary benefits would be paid to caregivers.
Education allowance of €129 per month would be paid for the caregiver toward education of physically challenged children. In the case of physically challenged children, a detailed assessment of needs, functional capacity, disability, and loss of income to the parent would be carried out by the committee for the rights and self-dependency of physically challenged persons and a supplement ranging from €97 to €1103 would be provided. A daily parent allowance €43 to €51 would be paid if the parent is looking after physically challenged child without attending the work. For the implementation of these, there are systems and funding agencies.
Department of Human Resources, Australia is concerned with caring of carers and it is done by different programs. Carer payment is for people who are unable to enter better-paid employment because of their caregiving for substantial period, i.e., more than 6 months and about $700 would be paid. A different carer allowance which is not taxable of $123 per fortnight would be paid.  An annual lump-sum payment to assist carers with the costs of caring for a person with a disability or medical condition called as carer supplement would be provided and it would be about $600 per annum.  A child disability assistance carer allowance of $1000 per child would be paid.  Such carer allowance for informal caregiving is being paid only a few countries like Australia, New Zealand, The Netherlands, Denmark, Finland, Belgium, Canada, Hungry, Ireland, Norway, Sweden, and the United Kingdom. 
| Asian Countries|| |
Cross-cultural difference might have played a role in the perceptions of caregivers about the process of caregiving, in Eastern countries compared to Western countries. Family support and cohesive living with the person with disability is expected norm in several Eastern countries including India. Caregiving process is mainly viewed as a responsibility to be fulfilled even when there is no or less external support. Caregiving for a family person with disability itself is viewed as one of the family members' responsibility, who often happens to be a woman in family. The culturally accepted belief of women need not be occupational earners, could have been the reason behind poor caregiver associations in India. The process of caregiving in India and other similar countries is more or less by choice and voluntariness, but this can also because of lack of appropriate state systems to take care of persons with disability. In contrast in Western countries, the process of caregiving can be more voluntarily than an obligation, wherein the state systems have to step in if there are no caregivers.
Rehabilitation Council of India has recognized the need of caregiver support for the persons with disabilities and has initiated caregiver training program which can last up to 10 months. Though this program is on paper, its real translation into practice to make a difference in the lives of carers is negligible. There is a financial benefit for caregivers with physically challenged dependants in income tax returns. As per the income tax India section 80 DD, the caregiver is eligible for income tax exemption of Rs. 50,000-100, 000. Disability can be due physical or mental health problems. Recent amendment of this law has increased this exemption to Rs. 75,000-125,000 depending on disability which will come into effect from April 2016. 
There is another benefit for the caregiver who has a dependant physically challenged child. GOI provides child education allowance for its employees through reimbursement of expenditure incurred on children education. The government reimburses up to Rs. 36,000 for the disabled child education if the child is studying without getting admitted in hostel and up to Rs. 108,000 if the disabled child is studying in a hostel facility. Unfortunately, there are no equivalent schemes for employees working under several state government employees.  A caregiver while accompanying the person with a disability in Indian railways is eligible from 25% to 75% concession depending upon the type of train and class of compartment.  Exemption from transfer can be availed by the government employee if he or she is providing care for a dependant who has a disability.  First of its kind a free legal aid clinic for the caregivers is established at NIMHANS, Bengaluru, which provides assistance in several legal issues that can arise in the lives of persons with mental illness and their caregivers.
| Discussion|| |
From the information obtained through an online search of several government websites it was observed that few developed countries have recognized the important role played by the informal caregivers. Policies were brought into effect in these countries to support the informal family caregivers in many ways. Few impacts of caregiving on informal caregivers are that they have to forego their opportunity to work, opportunity to progress in their career, and lose their opportunity to earn. Few governments have come up with policies like providing direct money transfer to these caregivers who lose their employment opportunities.  Moreover, one more important policy that could be found in few country policies is that protection of job of the caregiver by unpaid or paid leave, this leave is just like maternity and paternity leave by legislation.
| Conclusions|| |
Every person has a right to lead a satisfactory and productive life with an equal access to all the available services in a society. Rights are often talked about the people with disabilities who may not have access due to their impairments. But also there is a need to talk about the rights of the persons who care for these physically challenged persons as current Indian government and cultural frameworks implies that caregiving is a responsibility of relative of the person with mental illness.
It is debatable to what extent, it is the responsibility of the relative and to what extent it is the responsibility of the civic society. There is a bigger need to assess the quality of life, economic and social burden on the caregivers due to the caregiving process.
There is a greater need for stronger and collective caregiver associations for mental illness related issues. People in key positions in government who also act as caregivers should actively participate in these. Indian society needs to understand that caregiving cannot be just a private duty, but it should be a collective duty of the society. Such change would happen through wider campaigns, larger debates. Caregiver associations should be aware of conceptual changes in caregiving policies in developed countries. Mental health professionals including psychiatric social workers should take a lead in guiding caregivers so that they can put pressure on the government to adopt better policies to suit their needs.
Future directions for legal advances in India
Legal provisions should be brought in Indian labor legislations to protect the jobs of caregivers by providing job-protected paid or unpaid leave. An adequate number of respite care facilities should be established, and separate department should be established to assess the needs of caregivers. There should be a system of assessment of lost earning due to caregiving, and State should take the onus of either providing care for the disabled or by providing the compensation to the caregiver. Unless there is accountability, services may never reach those who require it; hence, chosen social justice and empowerment officials should be allotted these duties, and they should be made accountable for carer assessments.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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