Introduction

There is a loosely defined demarcation between illness, impairments and disability. Illness is a deviation from the normal physical or psychological state, whereas impairment is loss or abnormality of psychological, physiological or structural function (Sohail et al., 2013). Disability is a broader concept where a person cannot meet the social roles expected from him either because of impairment or environmental barriers (Sohail et al., 2013). However, the concept of disability was radically changed when the World Health Organisation released the International Classification of Functioning, Disability and Health (WHO - ICF) in 2001, which conceptualized disability as resulting in dynamic interactions between individual’s health conditions, environmental factors, personal factors, body structure, participation and stigma experienced by the person (Mulvany, 2000;WHO, 2013 ).

As the understanding of the concept of disability evolved over the years and the rights of people with disability needed significant boosts, the United Nations came up with a convention addressing the rights of persons with disabilities in 2006. It was named the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (). India ratified the UNCRPD mentioned above in September 2007, and the convention subsequently came into force in India in May 2008. This step required many modifications to existing Indian laws, policies, regulations, programs, and schemes as the existing legal statutes were not conforming to UNCRPD in the form of not being entirely inclusive for persons with disabilities or failing to incorporate disability inclusive principles like disqualifying persons with intellectual, developmental or psychosocial disabilities from getting married ().

As per the World Health Organization (WHO) report on disability, around 15% of the world’s population are persons with disabilities, and 2-4% of them suffer from significant difficulties in doing day-to-day functions (World Health Organization, 2011). Most of the latter people with disabilities require substantial support and long-term care. The latest legislation of the Mental Health Care Act – 2017 (MHCA 2017) mandates that Persons with Mental Illness (PWMI) should stay in a psychiatric hospital for a period as short as possible, and if there is no family support, the patient should be shifted to community-based establishments like halfway homes and group homes (;Sivakumar et al., 2020). The infrastructure required for the long-term care of these patients in the community is inadequate in India. As per the survey by the Hans Foundation done in 2019, more than a third of patients in mental hospitals in India have been staying there for more than one year. This highlights the absence of halfway homes and other infrastructures essential in reintegrating PWMI into the community (Sirur, 2019).

There has been a significant shift in psychiatric care from an inpatient setting to a community setting. Therefore, addressing the disability-related issues and rights of individuals with mental illness has become more critical than ever before. There has been a paradigm shift in the way disability is conceptualized from ‘individualistic” to a “social” approach, which includes identification and analysis of the social, political and economic barriers that restrict the opportunities for PWMI and reduce their full participation in the community (Berghs et al., 2016). The application of the social approach often shows the complexity and multiplicity of the social restrictions, disadvantages and oppression faced by PWMI and their families. The diagnostic labelling and stereotypes usually make PWMI stigmatized and more disabled than they are, creating a barrier to their full participation in the community (Berghs et al., 2016). So, it shows the importance of functional disability, meaning that the person experiences difficulty performing tasks needed for independent living (Vaish et al., 2020) thus compromising the ability to carry out basic tasks required for daily living. There are very few community-based studies on functional disability among elderly, especially in India. This study was done to find out the prevalence of functional disability and associated risk factors among the elderly in urbanized villages of Delhi.\n\nMethods:\nA cross-sectional study was conducted in two urbanized villages of East Delhi. A semi-structured interview schedule was used to record the socio-demographic and relevant personal details of the elderly (>60 years).

This illustrates the societal rules such as economic rationalism, consumerism and neoliberalism for the delivery of medical and welfare services for people with a psychiatric disability (Zeira, 2022). To understand functional disability, we need to understand the domains regulating the interactions between a person and society, like self-care, interpersonal relationships, employment and behavioural interpretations (Wunderlich et al., 2002). In the absence of community-based establishments, the caregivers take the burden of caring for PWMI. A caregiver stays with the patient constantly and assists in the patient’s daily activities (Walke et al., 2018). In India, it’s generally the family members who act as caregivers. The lives of caregivers and family members in India are affected through multiple pathways. Family members often sacrifice their aspirations and desires while caring for PWMI; their routine and their career goals get disturbed, they may lose social relationships, they face stress-related physical and mental health issues, they lose out on their financial stability, etc. Because of all these issues, the family members are in a disadvantaged position as much as the PWMI (Schene, 1990).

Because of the above-discussed disadvantaged position of PWMI and their caregivers, they are entitled to support from the Government. In this article we discuss such support programs across the developed countries like united States of America, United Kingdom and Australia. We also compare and contrast those programs with the programs available in India and discuss the recommendations that can be implemented in India.

Methods

We restricted our exploration to three developed countries: United States of America (USA), United Kingdom (UK) and Australia, as these countries represent services on different continents and may have well-developed disability services.

Using search terms such as ‘disability’, ‘disability benefit’, ‘psychiatric disability’, ‘mental disability’, ‘assessment’, ‘measurement’, an extensive search in PubMed, Embase, and Google Scholar was carried out. Having found a limited number of articles, which would not justify a systematic review, a further search of official government websites of these countries was carried out to collect the required information.

Results

United States of America

As a developed country, the USA has a systematic disability assessment system. Disability evaluation can be requested by different authorities, such as employers, government institutions, insurance agencies, or either party in litigation. The Global Assessment of Functioning (GAF) Scale is generally utilized to assess functioning (Sohail et al., 2013).

The Social Security Administration (SSA) offers two disability benefit programs for persons with mental illness: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Both benefits are available only if the mental illness is likely to cause more than 12 months of unemployment. SSDI is available for someone who has been earning in the past, meets the employment criteria, has paid the social security taxes, and is currently disabled and unable to gain meaningful employment (NAMI, 2023). SSI is available for disabled adults and children if they have limited income sources and assets. Another difference between SSDI and SSI is that SSDI won’t get affected by the individual’s assets, unlike SSI, which is not provided if the person has assets more than a particular threshold (NAMI, 2023).

There might be multiple impairments in a person where one single impairment cannot cause severe dysfunction, but altogether, several disabilities can cripple the person. In that case, the person will be considered disabled. The person wanting to get disability benefits can request an assessment from the district offices (DOs), after which a team consisting of Disability Analyst and a Reviewing Medical Consultant will review the medical records documented by the private or Government psychiatrist or general practitioners. Listing of impairments is done as per the Psychiatric Review Technique Form (PRTF) (Kennedy, 2002).

The next step of disability assessment enquires about the severity of the illness, i.e. whether it precludes workability. If the severity is not enough to meet the criteria, then it has to be assessed through the Reviewing Medical Consultant, who provides additional input into the decision by completing the Mental Residual Functional Capacity Assessment (MRFCA). MFRCA assesses four domains, namely (1) understanding and memory, (2) sustained concentration and persistence, (3) social interaction, and (4) adaptation. If the Disability Analyst finds that the claimant can do previous work, the claim is denied, but if the claimant cannot do previous work, the claim continues one final step in the initial review. The last step is similar to the previous one, where the analyst will decide about the claimant’s work capacity (Kennedy, 2002;Okpaku, 2009).

Disability Assessment

The Social Security Administration (SSA) uses the “Mental Residual Functional Capacity Assessment” (MRFCA) to measure psychiatric disability. This structured process involves two main criteria: the presence of an identifiable psychiatric illness and the assessment of the individual’s functional capacity across four domains. These domains help determine how the mental illness affects the individual’s ability to perform daily activities and maintain employment. Here’s an explanation of each domain and the rating system:

1. Understand, Remember, or Apply Information

This evaluates the individual’s ability to learn, recall, and use information. It includes tasks such as:

• Understanding instructions

• Remembering procedures

• Applying knowledge to carry out tasks

2. Interact with Others

This assesses the individual’s capacity to interact appropriately and effectively with other people. It includes:

• Ability to communicate clearly

• Engaging in social interactions

• Maintaining relationships

3. Concentrate, Persist, or Maintain Pace

This measures the individual’s ability to focus on tasks, sustain concentration, and maintain a consistent pace during work or daily activities. It covers:

• Sustaining attention to tasks

• Performing activities within a schedule

• Completing tasks promptly

4. Adapt or Manage Oneself

This domain evaluates how well individuals can manage their needs and handle changes or stress. It includes:

• Managing personal hygiene

• Making plans independently

• Coping with changes in routine or unexpected events

Rating System (0-5 Scale)

The SSA rates the severity of impairment in each domain on a scale from 0 to 5:

• 0: No limitation

• 1: Mild limitation

• 2: Moderate limitation

• 3: Marked limitation

• 4: Extreme limitation

• 5: Unable to function in this area

These ratings help determine the overall impact of the mental illness on the individual’s ability to work. If the ratings indicate significant limitations, the person may qualify for disability benefits. The SSA uses these assessments, medical records, reports from healthcare providers, and other evidence to determine disability status (Social Security Administration, 2023).

Disability Benefits

The financial support received under the above-discussed schemes is the following: Under SSI, the individual can receive up to 943$ per month, and the couple can receive up to 1415$ per month (SSI Federal Payment Amounts for 2024, 2023). The financial benefit that the individual gets under SSDI depends upon the contribution he has made while he was earning. The average SSDI payment in 2021 was 1483$, and the maximum amount one can receive under SSDI is 3627$ per month (Laurence, 2023).

In the case of substance addiction, rules are complicated. One is entitled to get benefits if they have been suffering from substance dependence, which has induced irreversible medical, neurological or psychological illness, brain damage, liver damage, pancreatitis, gastritis, peripheral neuropathy, seizures, anxiety disorder, major clinical depression, or personality disorder. If the SSA believes that the illness will subside once the substance is quit, then they will probably deny the claim. If one wins the disability claim but the SSA believes they are still using drugs, the SSA may require that person to attend treatment for drug addiction and have a representative payee. A representative payee will receive the Social Security check and manage payments on behalf of the disabled person. The representative payee can be a person that the patient can trust, such as a parent, or it can be a qualified organization. The representative payee is expected to prevent the person from spending the money on drugs (Goldsmith, 2023).

Australia

In Australia, persons with psychiatric illness are provided disability support services under the national disability agreement. Social Security Act 1991 part 2.3 details about disability support programme (Govt of Australia, 2023d)

Disability Assessment

Medical practitioners focus on different domains of assessment, such as self-care, independent living, interpersonal relationships, social/recreational activities, concentration, task completion, behaviour, decision-making, and work capacity, which are taken into consideration. Medical doctors use the nationally recognized “Impairment Tables” to determine whether a person whose qualification for DSP is being considered meets a qualifying impairment threshold stipulated under “Social Security”. The individual has been diagnosed with mental health conditions, including chronic depression and Complex PTSD, which significantly impact psychiatric and cognitive functions. These conditions are reasonably treated with therapy and medication but result in long-term impairments that are expected to persist for more than two years. The impairments include difficulties with memory, concentration, comprehension, and significant emotional distress and anxiety. This aligns with the criteria under the Australian Disability Assessment Tables, indicating a substantial and ongoing impact on the person’s daily functioning and quality of life, necessitating continued support and treatment. The impairment in functioning can be rated as no or mild or, moderate or, severe or extreme impairment. (Govt of Australia, 2023d).

Disability Benefits

TThere are different schemes under disability support services, which are discussed below. Firstly, Disability Support Pension: This is financial support provided for people who are not able to work due to impairment caused by physical, intellectual or psychiatric conditions. Eligibility criteria to claim this pension include age more than 16 years, scoring more than 20 points on impairment tables due to psychiatric illness and having continued inability to work for more than 15 hours in a week. The disability is based more on functional impairment rather than psychiatric diagnosis. The condition should be diagnosed by a specialist doctor, it should have been fully treated and fully stabilized, and it should be likely to persist for more than two years. The disability assessment is not solely based on the information given by the patient but also based on the supporting documents that are produced. Patients with autism, dementia and Specific learning disorders are not covered under this program. The disability medical assessment is a must before anybody can get disability benefits, and it is done by a doctor appointed by the government. The evaluation is carried out using the Diagnostic and Statistical Manual of Mental Disorders (DSM) or the International Classification of Diseases (ICD) based tools (Govt of Australia, 2023). The amount of pension one gets depends upon age, marital status, assets, debts and income that the patient is getting from other sources (1096.70 to 1653.40 AUD per fortnight) (Govt of Australia, 2023c ).

Secondly, Carer Allowance is available for people who provide constant care for a disabled person. There is no asset limit to obtain this benefit, but one must satisfy the income test (total taxable income of the family less than 25000 AUD). Carer allowance is approximately 144.80 AUD per fortnight (Govt of Australia, 2023b).

And finally, Carer Payment: This is provided for people who provide constant care to those having a disability, severe illness, or frail age, and because of the demands of caring, they are unable to gain any meaningful employment. To be eligible to get this, a person should be providing care to a disabled person for a minimum of 6 months and should meet the income and assets test. The amount paid can vary from 1096.70 to 1653.40 AUD per fortnight (Australia Services, 2023).

United Kingdom

The Disability Discrimination Act 1995 addressed the rights of persons with disability, it was amended in 2005 and was finally replaced with the Equality Act in 2010. As per the above legislation, a person is said to have a disability if he has a physical or mental impairment and that impairment has a substantial and long-term adverse effect on the person’s ability to carry out normal day-to-day activities.

Disability Assessment

In the UK, the Health of the Nation Outcome Scales (HoNOS) is widely used to assess disability. The HoNOS includes 12 domains that evaluate various aspects of mental health and social functioning:

1. Overactive, aggressive, disruptive, or agitated behaviour

2. Non-accidental self-injury

3. Problem drinking or drug-taking

4. Cognitive problems

5. Physical illness or disability problems

6. Problems associated with hallucinations or delusions

7. Problems associated with depression

8. Other mental and behavioural problems

9. Problems with relationships

10. Problems with activities of daily living

11. Problems with living conditions

12. Problems with occupation and activities

Each item is rated on a scale from 0 to 4, with a total possible score of 48. The average score is calculated by dividing the total by 12. Scores between 2 and 4 indicate significant disability. This comprehensive tool helps in understanding the severity and impact of various issues on an individual’s life, contributing to targeted treatment and support planning ().

There are four different types of financial benefits offered to people with disability and to their carers: Disability Living Allowance, Personal Independence Payment, Attendance Allowance and Carer’s Allowance.

DDisability living allowances: This is a tax-free amount paid to eligible candidates who have personal care and/or mobility needs as a result of mental illness. Currently, it has been replaced by Personal Independence Payment, but it continues to stay active for those who are already enrolled under this and are getting these allowances. Also, those under 16 years of age can apply for Daily Living Allowances. There are two components to this benefit, i.e., the care component and the mobility component. This allowance can be claimed by anyone between 3-65 years of age. After receiving the application, the Department of Works and Pension might or might not send the applicant for a medical examination. The amount of the care component varies between £26.90 per week to £101.75 per week, and the amount of the mobility component varies between £26.90 per week to £71 per week (GOV.UK, 2023c).

Personal Independence Payment: Personal Independence Payment was introduced in April 2013, which replaced Disability living allowances. Personal Independence Payment differs from Disability Living Allowances in various features. It has different qualifying rules for disability assessment; it is done by an independent health professional, the evaluation is done on a 12-item scale, which is usually a face-to-face interview and disability is generally awarded for a fixed period of time, after which the claimant has to reapply for it. The rest of the provisions are similar to those of the DLA. There are two components: the Daily Living Part and the Mobility Part. The amount of the Daily Living Part varies between £68.10 per week to £101.75 per week, and the amount of the Mobility part varies between £26.90 per week to £71.00 per week. The 12-item scale assesses the following domains: Daily living activities (Preparing food, taking nutrition, managing therapy or monitoring a health condition, Washing and bathing, managing toilet needs or incontinence, dressing and undressing, Communicating verbally, Reading, Mixing with other people, Making decisions about money) and Mobility activities (Planning and following a journey, Moving around) (GOV.UK, 2023e ).

Attendance Allowance: this is the social security benefit paid to elderly disabled people who need help with day-to-day activities or need continued supervision. This is available only to persons aged above 65 years and who satisfy the conditions of disability for at least six months. This benefit is not available for those who are receiving DLA or PIP before turning 65. The amount paid varies from £68.10 per week to £101.75 per week (GOV.UK, 2023a).

Carer’s Allowance: This is the taxable amount paid to those who care for a disabled person for at least 35 hours a week. The disabled person must be receiving either Disability Living Allowance (middle or higher rate for personal care), Attendance Allowance, or Personal Independence Payment. The claimant must have been present in the United Kingdom for two out of the last three years, must be aged more than 16 years, must be earning less than £120 per week from paid employment and must not be in full-time education. The amount paid is £76.75 per week (GOV.UK, 2023b).

Employment and Support Allowance: This was introduced in 2008, replacing the incapacity benefit, which in turn had replaced the Severe Disablement Allowance in 2001. This is financial support given to people who have difficulty finding a job due to disability. To claim this benefit, one has to get a sick note signed by their general physician saying that the person is not fit for work. Then, the claimant has to contact the Department for Work and Pensions, who will send a questionnaire to the claimant, which has to be filled out and sent back. Then, the “Work Capability Assessment” is done by an independent health care provider, and the claimant will be placed in either a work-related activity group or a support group depending upon the level of impairment in work capacity assessment. The amount paid is up to £84.80 a week if one is in the work-related activity group and up to £129.50 a week if one is in the support group. The claimant in the work-related activity group is supposed to go to regular interviews with an adviser, who will help with things such as job goals and improving job skills. The benefit amount might be reduced if the claimant misses the interviews with the adviser or if the advice of the adviser is not followed (GOV.UK, 2023d).

Indian Scenario

The concept of disability assessment is comparatively new in the Indian subcontinent. Only in 2002 was the Indian Disability Evaluation and Assessment Scale (IDEAS) approved by the government, even though WHO defined the concept of disability in 1993. The IDEAS is adopted from the WHO Disability Assessment Schedule 2.0 (WHODAS 2.0). It has four domains: self-care, interpersonal activities, communication and understanding, and work. In each domain, impairment is scored from no impairment to mild, moderate, severe and profound impairment. Weightage is given to the duration of illness, and later, the summated score is interpreted on the grounds of the percentage of disability. A board of three members consists of a medical superintendent, principal, director, or head of the nearest medical college. A psychiatrist and physician are required to validate the assessment and certificate. A score of above 40% is considered the benchmark for disability in the Rights of Persons with Disabilities Act (RPWD Act) - 2016, which is essential to get any kind of benefit. A score of more than 70% is considered a high support need (Basavarajappa et al., 2017). Some of the benefits provided to persons with disabilities and their caregivers include monthly pension, travel concession up to 50%, transfer of family pension, income tax concession, finance and employment benefits. The financial support is provided only to those with mental illness in India, and no such assistance is provided to the caregivers. The financial support given varies between different states of India from 1000/- to 2000/- rupee per month, and it is subject to the economic condition of the state (Department of Social Welfare, Women & Child Development, 2023, 2023). Any person wishing to get disability-related benefits has to enrol on the government website (Govt of India, 2023). During the procedure enrollment, the patient will be asked to select where they want to get his disability assessment done, and the patient can choose it either from the treating psychiatrist or from a nearby public psychiatric setup. Following the appraisal using the Indian Disability Evaluation and Assessment scale, he will be issued the disability certificate, and PWD can avail of the disability pension using this certificate by approaching the Department of Social Justice of their respective states. Compared to other countries that are discussed above, we do not have elaborate financial support schemes in India for people with disability and those who care for them.

Comparison of Disability assessment tools and procedures between India and other countries:

Different countries use different tools for assessing the disability. Tools that are used in the USA and UK appear more comprehensive and detailed. There is no weightage given to the duration of illness in scoring the disability, though the USA and Australia require the illness to cause disability lasting for a minimum period of 6 months – 2 years. In India, the IDEA Scale is used to assess disability. IDEAS is being criticized for its overemphasizes on the facet “duration of illness” (DOI). Because of this, many get disability benefits even though the severity of illness is not severe. WHO-DAS does not give any weightage on DOI, whereas IDEAS gives 20% weightage. So, the recommendation is there to use a single scale (WHO-DAS) across all medical and psychiatric disorders instead of IDEAS to solve such issues, which definitely needs large-scale field trials (Basavarajappa et al., 2017).

Until recently, disability assessment procedures in India were not very structured. Every state had their own set of rules. In the last few years, there have been attempts to streamline the disability certification procedure; there is a dedicated website through which one can apply for a disability certificate and get the required identity card to obtain the benefits of a disability. In the USA, UK, and Australia, the procedure for obtaining disability benefits appears clear as it is clearly mentioned on government websites, with most procedures being online.

Comparison of Disability benefits between India and other countries

In India, the pension provided is between 1000 – 3000 Indian rupee (INR) (equivalent to 12 to 36 USD) in most of the states, and this is provided depending upon the financial condition of the state, which makes it a charity-based approach rather than rights-based. The amount received as disability pension is on the higher side in those countries, which ranges from around 23,000 INR (UK – 215 Pounds) to 1.8 lakh INR (Australia – 3370 AUD). Even though direct comparisons are difficult to make, the sum of 1000 – 3000 received per month in India is grossly inadequate to meet the day-to-day needs of an individual per month.

Comparison of caregiver support between India and other countries

Another important issue addressed in other countries is the caregiver burden. There are dedicated financial welfare schemes for PWD caregivers. In India, there are inadequate number of rehabilitation setups to address integration of PWD into community. Often the carers must look after the disabled with their own savings. The carer allowance is nonexistence in India except few states where they might get as low as 10 USD per month.

Discussion

The whole process of applying for disability certification, assessing disability, and availing the provisions available for PWD in India needs a significant overhaul when compared to developed countries. Disability assessment is often done by treating psychiatrists in India, which could bring bias in assessment, leading to overscoring to avail maximum facilities for their patient. Due to the scarcity of professionals, it is a distant dream to have a dedicated disability psychiatrist or forensic psychiatrist in India in the near future. However, a second-person approach can be employed in disability assessment, where the treating psychiatrist will advise the patient to visit another government-appointed psychiatrist for a disability assessment.

Unlike the UK and the USA, India does not have work capacity assessment guidelines, so fitness to work assessment is done by a regular psychiatrist in an unstructured manner. While providing the disability benefits, other socio-economic factors like the marital status, dependents, assets, income from other sources etc, are never taken into consideration in India: it is an environment of equality but not equity (Juda, 2020). Moreover, caregivers are not provided any benefit even though their lives are significantly affected by the illness of the patient.

Conclusions

There is significant scope for improvement in the procedure related to disability assessment and awarding disability benefits in India. We need to find a more comprehensive tool for disability assessment that can assess the actual functional disability caused by the illness rather than just evaluating the severity and duration of symptoms. We also need to streamline the procedure of applying for disability certificates to obtain all the disability benefits through a single point of application. We also need to address the caregiver burden by incentivizing them to compromise in their personal and professional life

DECLARATIONS

ACKNOWLEDGEMENTS

No Acknowledgements

CONFLICTS OF INTEREST

The authors declare no conflict of interest in conducting this review.

ETHICAL APPROVAL

As no new data was collected for this study, no ethical approval was necessary.

FUNDING

This review did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

INFORMED CONSENT

As no new data was collected for this study, no informed consent was required.

Abbreviations Use:

World Health Organisation - International CADAT - Adult Disability Assessment Tool

DSM-GAF- DSM– Global Assessment of Functioning

IDEAS- Indian Disability Evaluation and Assessment Scale

MHCA 2017 Mental Health Care Act – 2017

MRFCA- Mental Residual Functional Capacity Asssessment

PRTF- Psychiatric Review Technique Form

PWMI- Persons With Mental Illness

SSA- Social Security Administration

SSDI- Social Security Disability Insurance

UK- United Kingdom

UNCRPD- United Nations Convention on the Rights of Persons with Disabilities.

USA- United States of America

WHO-ICF- World Health Organisation -International Classification of Functioning, Disability and Health

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