Swavlamban Health Insurance scheme for persons with disabilities: An experiential account.

CONTEXT: Out-of-pocket expenditure on health in India is high. Many people including persons with disability (PwD) face catastrophic health expenditure. Health insurance is a promising strategy to overcome this burden. Swavlamban was the first health insurance for PwD which also covered mental illness. We conducted regular camps at the National Institute of Mental Health and Neurosciences (NIMHANS) for enrollment in the scheme. In this study, we present the features of the scheme and the sociodemographic profile of beneficiaries enrolled. AIMS: To describe the experience of conducting enrollment camps for the Swavlamban Health Insurance scheme at NIMHANS and the sociodemographic profile of beneficiaries enrolled. SETTINGS AND
DESIGN: The study comprised all PwD and their family members enrolled in the Swavlamban through the camps conducted at NIMHANS from May 2016 to April 2017.
RESULTS: A total of 1248 persons were enrolled, of which 643 were PwD. The beneficiaries (PwD) were predominantly male (69%), with a mean age of 31 years, from Bengaluru (84%), and majority had disability due to mental retardation (43%). Although camps were conducted in mental hospital and publicized among mental health professionals, only 135 persons disabled with mental illness (21% of PwD beneficiaries) were enrolled.
CONCLUSIONS: Mental health professionals need to take the lead in coordinating with various stakeholders so that the PwD can avail health insurance and other welfare benefits. There is a need to lobby and advocate for making these schemes easily accessible.

INTRODUCTION

The World Health Organization (WHO) estimates that out-of-pocket expenditure on health in India is as high as 65.1% (percentage of the current health expenditure) as compared to the world average of 32%.[1] Every year, 3.5% of the Indian population becomes impoverished and 5% face catastrophic expenditure due to medical bills. Catastrophic expenditure is defined as expenditures that account for >40% of nonfood spending or 10% of household expenses.[2] When families face catastrophic health expenditure, they are forced to sell valuable assets, cut down on savings, or borrow, leading to impoverishment.[3] Nearly 13.68% of the Indian households are forced to borrow at exorbitant rates for health expenses, trapping them in debt and poverty, extending to subsequent generations.[4]

It is well known that poverty and disability form a vicious circle.[5] In India, persons with disability (PwD) comprise 2.214% of the population.[6] More than half (51%–53%) of PwD cannot afford health care.[7] Various solutions offered to facilitate the utilization of health care by the needy include prepayment mechanisms such as social insurance, voluntary health insurance, and tax-based arrangements.[7] Health insurance is seen as a promising strategy to enable families in low- and middle-income countries to utilize health-care services without incurring catastrophic out-of-pocket health expenditure.[8]

A range of health insurance schemes are available in the market which differ in terms of inclusion and exclusion criteria of health conditions covered, the network of hospitals, cashless treatment/co-payment clauses, individual/group health insurance policies, etc., The premium paid differs according to age, medical history, risky behavior (including substance use), and no claim discounts for previous years.

Health insurance schemes in India include those[9]

Offered by the Government of India for

Employees:

Central government employees: Central Government Health Scheme

Employees under “Employees State Insurance Act, 1948”: Employees' State Insurance Scheme

Specific target populations:

Below poverty line (BPL) card holders: Rashtriya Swasthya Bima Yojana, Universal Health Insurance Scheme, Rajiv Aarogyasri in Andhra Pradesh, Mukhyamantri Amrutam in Gujarat, The Chief Minister's Comprehensive Health Insurance Scheme in Tamil Nadu, and recently Ayushman Bharat – Pradhan Mantri Jan Arogya Yojana (PM-JAY)

Rural co-operative society members: Yeshasvini Cooperative Farmers' Health Care Scheme in Karnataka.

Offered by insurance companies to the general public

Public sector: Including the New India Assurance Company Limited (NIACL), the National Insurance Co. Ltd., the Oriental Insurance Co. Ltd., and the United India Insurance Co. Ltd

Private sector companies: Including HDFC Ergo, ICICI Lombard, Star Health, Max Bupa, Tata AIG, and Reliance.

The health insurance schemes offered by the Government of India do not exclude PwD but cater to specific populations (employees or persons BPL). Health insurance policies offered by insurance companies to the general public do not cover preexisting conditions (including disabilities) and charge high premium fees.

PwD from lower or middle socioeconomic status, who do not meet criteria for other government-offered health insurance schemes, are at a disadvantage in accessing quality health care. It is important to facilitate access to subsidized health insurance schemes for this population. Niramaya Health Insurance is one such government-run health insurance scheme targeted at PwD due to mental retardation, cerebral palsy, autism, and multiple disabilities under the National Trust Act, 1999.[10] There were no special insurance schemes for PwD due to other conditions till 2015. On October 2, 2015, the Department of Empowerment of Persons with Disabilities signed a Memorandum of Understanding with the NIACL to launch Swavlamban Health Insurance Scheme for the benefit of PwD covered under PwD Act, 1995,[11] the relevant legislation for disability at that time. As mental illness was one among the seven disabilities under this act, the insurance scheme was the first insurance scheme to include persons disabled with mental illness in India.

Swavlamban Health Insurance Scheme: Features

The launch of the scheme was not publicized much, and the authors got to know about the scheme[12] while updating pamphlets on “Welfare benefits for persons with psychiatric disabilities.”[13]

The information about the scheme was sought through the customer care of the NIACL and E-mail. Officials from the company and third-party administrator (TPA) (Vidal Health) were invited and participated as resource persons in “Caregivers support and education program workshops” (organized on the 3rd Tuesday of every month since July 2013 at the Psychiatric Rehabilitation Services [PRS], National Institute of Mental Health and Neurosciences [NIMHANS]) on February 23, 2016, for sharing the details of the scheme. The important features of the scheme are presented in Table 1.

Table 1

Swavlamban Health Insurance Scheme

	Features
Type	Group health insurance/family floater
Sum insured	Rs. 2 lakhs for the individual/family
Premium	A central government-subsidized premium of Rs. 356 per PwD/family (p.a.); with 90% subsidy (total premium: approximately Rs. 3500 p.a.)
Period	12 months from the date of issue of the policy
Age band	0-65 years
Primary person insured	PwD (as per Persons with Disabilities Act, 1995)
Family insured (years)
PwD <18	Parents/legal guardians
PwD >18	Spouse and up to two children, till they cross 18 years of age
Income limit	Family annual income of ≤Rs. 3 lakhs to be self-declared in proposal form (income of PwD/family of procreation for a major)
Services covered
OPD cover for persons with mental retardation and mental illness: Rs. 3000 p.a. (only for the disability for which disability certificate is issued from network hospitals)
Inpatient care for a minimum of 24 hours. Any ailments including preexisting medical conditions are covered
Specified procedures (medical treatment and/or surgical operation) done in day-care centers
Pre-/post-hospitalization
Room expenses, intensive care unit/cardiac care unit expenses, and ambulance services
AYUSH for inpatient/outpatient care. Naturopathy is not covered

OPD – Outpatient department; AYUSH – Ayurveda, Unani, Siddha, Homeopathy; PwD – Persons with disability; p.a. – Per annum

Conditions with respect to mental illness that are excluded

Substance use disorders and deliberate self-harm

Health insurance policies cover only treatment in facilities covered under the Clinical Establishments Act, 2010. Hence, it does not cover expenses incurred at rehabilitation facilities such as day-care/halfway home/long stay facility.

The salient feature of this policy was its coverage of all preexisting conditions and not requiring a premedical checkup. This was a boon to PwD as health insurance policies usually mandate a medical checkup before issuing policy and exclude preexisting conditions and their complications for a few years.

Besides, the policy offered an outpatient coverage of Rs. 3000 per annum. For a person with mental illness, the policy offered a good deal. By paying a premium of around Rs. 350, they could get reimbursement of Rs. 3000!

Camps for enrolling persons with disability in the Swavlamban Health Insurance Scheme at the National Institute of Mental Health and Neurosciences

In the workshop, officials explained that PwD would be enrolled through camps and not directly through their office or agents. Camps could be conducted by government institutes/nongovernmental organizations (NGOs). As the scheme was an important step forward for persons with mental illness, the responsibility of conducting the camps was taken up by the PRS, NIMHANS.

Official permission was granted to the NIACL to enroll PwD in the Swavlamban Health Insurance Scheme at camps organized periodically at the information center for PwD located at the NIMHANS (funded by the Directorate for Empowerment of Differently abled and Senior citizens, Government of Karnataka, and coordinated by Seva in Action, an NGO). The first camp was conducted on May 21, 2016. It was attended by the nodal officer for the Swavlamban Health Insurance Scheme from New Delhi. The camps were conducted subsequently on the 3rd Saturday of every month.

Publicity for the enrollment camps at the National Institute of Mental Health and Neurosciences

Enrollment camps were advertised through flyers, E-mail (to faculty and students at NIMHANS, E-mail group of Indian Psychiatric Society (IPS)-Karnataka chapter, e-IPS, and organizations of PwD), and PRS Facebook page. Press release was also sent to newspapers about the camps. Publicity was started at least 1 week before the camp. Academic sessions were conducted at NIMHANS to sensitize students/faculty to spread awareness and refer eligible persons. To begin with, persons availing services at PRS were referred for the camps. Over a period of time, we anticipated word-of-mouth publicity among PwD/family members to pick up.

Procedure for enrollment in the Swavlamban Health Insurance Scheme

The enrollment camp was open to all PwD. The central location and connectivity to the institute helped PwD enroll for the scheme at the NIMHANS.

The officials from the NIACL, Vidal Health, Information Centre for PwD, and volunteers (including students posted in the PRS) were involved in coordinating the camps.

The PwD and family submitted the application form with relevant documents to representatives from the NIACL who verified the document and collected the premium amount and sent the documents and premium collected to New Delhi office of the NIACL which issued the policy after getting the remaining premium from the Government of India. The policy document was directly sent by post to the address of beneficiary.

Policies were issued for those who applied till April 2017. The reason for stopping the scheme was not made public. All issued policies were honored.

Aim and objectives

To describe the experience of conducting enrollment camps for the Swavlamban Health Insurance Scheme at the NIMHANS and the sociodemographic profile of beneficiaries enrolled.

SUBJECTS AND METHODS

Subjects

The study population were all PwD and their family members enrolled in the Swavlamban Health Insurance Scheme through the camps conducted at the NIMHANS from May 2016 to April 2017.

Methods

The details of sociodemographic profile of beneficiaries enrolled in the camps were extracted from register maintained at the Information Centre for PwD.

As it was a retrospective chart review of beneficiaries, the institute's ethics committee approval was not required.

Statistics

Descriptive statistics were used.

RESULTS

A total of 1248 persons were enrolled of whom 643 were PwD. The sociodemographic details of beneficiaries are presented in Table 2. The beneficiaries (PwD) were predominantly male (69%) with a mean age of 31 years, ranging from 1 to 64 years, from Bengaluru (84%), and majority had disability due to mental retardation (43%).

Table 2

Demographic and clinical characteristics (n=643)

Variable	Mean (SD) or n (%)
Age (years)	31.31 (15.16)
Range	1-64
Gender
Male	446 (69.36)
Female	197 (30.64)
Location
Bengaluru	465 (83.63)
Rest of Karnataka	80 (14.39)
Other states	11 (1.98)
Disability
Visual	44 (6.85)
Hearing	22 (3.43)
Locomotor	166 (25.86)
Mental retardation	275 (42.83)
Mental illness	135 (21.03)
Number of persons enrolled
1	297 (48.85)
2	68 (11.18)
3	192 (31.58)
4	51 (8.39)

SD – Standard deviation

DISCUSSION

Most beneficiaries were from Bengaluru (84%) where the camps were conducted. Interestingly, PwD from other states (Andhra Pradesh [2], Kerala [2], Tamil Nadu [5], and Bihar [2]) were also enrolled for the scheme at the camp.

Nearly 49% of the PwD enrolled did not list any other family member. As data on marital status of PwD were not collected at the time of enrollment, it is likely that most of them were adults who were unmarried. Almost 32% of the PwD were enrolled with two more family members. In most of them, child had disability (n = 166) and both parents enrolled as beneficiaries.

It was anticipated that NGOs and mental health professionals would register PwD in huge numbers for enrollment in the scheme. An online form was created to enable beneficiaries enroll for the camp in advance, which would help us organize camps efficiently. By the second camp, it was clear that enrollments were not happening in the way anticipated. Most PwD enrolled were referred directly to the Information Centre for PwD on the 3rd Saturday of every month.

Referrals for disability certification were received by the authors, especially from other organizations (including NGOs, missionary hospitals, and private sector) so that their clients could also enroll for the insurance scheme.

In a year of conducting camps, only 1248 persons (including 643 PwD) were enrolled in the scheme at camps conducted at the NIMHANS. Among PwD enrolled, 43% had mental retardation and 26% had locomotor disability. The high proportion of enrollment of PwD with mental retardation was due to referrals from NGOs (including parents' associations of persons with mental retardation) and word-of-mouth publicity. The number of persons with locomotor and visual disability was high in initial camps. Later, organizations working for the empowerment of persons with locomotor and visual disability organized camps at their premises for enrollment. When the number of PwD was small, insurance company officials directed them to come to the NIMHANS camp for enrollment. Persons with mental illness and other disabilities from community-based rehabilitation (CBR) program at Jagaluru taluk at Davanagere district (where the authors are involved) were also enrolled in the scheme due to efforts by the Association of People with Disabilities (an NGO partner for the CBR program) in liaison with the NIACL officials at Davanagere.

Section 24.3 (j) of the Rights of Persons with Disabilities (RPwD) Act, 2016,[14] and Section 21.4 of the Mental Healthcare Act, 2017,[15] create provision of insurance for PwD, especially PwD due to mental illness. To comply with this provision, the Insurance Regulatory and Development Authority of India directed all health insurance companies on August 16, 2018, to provide medical insurance for the treatment of mental illness on the same basis as is available for the treatment of physical illness.[16] Currently, Ayushman Bharat: PM-JAY covers mental illness for eligible families, i.e., deprived rural families and occupational categories of urban workers' families as per the Socioeconomic Caste Census data.[17]

Disadvantaged population like PwD need equal access to health care to ensure that the vicious circle of disability and poverty is broken. While health insurance can be an effective health-financing mechanism for some, it cannot substitute the public system.[18] India ranks as one of the most heavily dependent on out-of-pocket expenditure and private health care in the world.[19] Private sector accounts for nearly 80% of all outpatient visits and more than half of all hospital stays for general health care.[202122] Key opinion leaders have advised that public spending on health in India should be increased from 1% to 6% of the gross domestic product, and the public should be covered by an entitlement package of health care with financing from a combination of public, employer, and private sources.[19] Government health facilities need to be accessible and sensitive to the needs of PwD. Government-subsidized health insurance schemes tailored for PwD is one more additional way of facilitating access to quality health care from a convenient facility (which is likely to be private sector in view of the existing situation), especially for those from lower socioeconomic status. Analysis of reimbursement claims in publicly funded health insurance schemes in India showed that 80% is for services availed from private sector.[3]

When an important expenditure is taken care of, family members/relatives/well-wishers find it easier to provide shelter, food, clothes, medical care, and life with dignity for PwD. The PwD with high support needs have a higher chance of being taken care of by other family members even when parents are no more.[2324]

Challenges

In India, private sector accounts for 85% of mental health treatment.[25] Spending on treatment often drives families to economic crisis.[25] Families spend about Rs. 1000–1500/month for treatment and travel to access care.[25] The high out-of-pocket expenditure greatly influences treatment gap. As disability certificates are issued mainly in government hospitals, many persons disabled with mental illness being treated in private sector are not certified for disability and cannot avail welfare benefits.

More than 1000 disability certificates are issued every year, mostly for mental retardation and mental illness at the NIMHANS. The number of persons admitted per year and treated on an OPD basis is an exponentially much higher number. It was a disappointment that only 135 persons disabled with mental illness (21% of PwD enrolled) were enrolled in the camps. Most of them were referred from the PRS team.

The welfare benefits in our country are not comprehensive, and it takes a lot of effort to avail them. Despite efforts to make the process easy, the number of referrals from mental health professionals in OPD and inpatient department was lukewarm. In contrast, there were more people referred by snowballing. The lukewarm response may be due to multiple factors such as low penetration of health insurance among the general public including mental health professionals who are not aware about its need, busy OPD, doubts about practical utility to PwD, perception of mental health professionals that it is not their job, and persons availing free medicines/subsidized services from hospital do not need health insurance. The last factor is due to ignorance about the need for taking health insurance: to cover risk for unanticipated health expenditure. For example, a person may be getting free antipsychotics from hospital but may have to spend out of pocket for some other medical expenditure (such as fever, accident, and heart ailments). The authors came across PwD and family members enrolled in the scheme who benefited for such nonmental health expenditures.

Although welfare benefits for PwD in India are minimal in comparison with that of developed countries, they do make a difference in the rehabilitation process. When persons report of difficulties in getting welfare benefits, mental health professionals get an impression that schemes are available only on paper and time is better spent on other issues of “clinical relevance.” This leads to a “chicken and egg” situation where professionals do not discuss about disability certification and welfare benefits with every person. Rather, disability certificate is more likely to be issued when the person or family member requests for it or in case of very poor persons where the treating team perceived that disability pension will help the family. While it is true that there are bureaucratic hurdles, there are several benefits (such as income tax exemption) which can be easily availed without running from pillar to post. Due to the general pessimism about the receipt of welfare benefits, utilization of welfare benefit such as the Swavlamban Health Insurance Scheme was low even when there were no hurdles to avail the scheme and camps were conducted at the OPD premises. More work is needed to sensitize mental health professionals, students, and government officials about the benefits available and their impact on the lives of PwD and their families.

Facilitators

Similar to camps conducted at the NIMHANS, efforts were made by other organizations across the country to coordinate such camps. A key challenge reported was support from various stakeholders. The camps at the NIMHANS were made possible by the support of various stakeholders:

Seva-in-Action: To establish and run “Information Centre for PwD” at the NIMHANS where the camps were conducted. Enrollment for the Niramaya and the Swavlamban Health Insurance Schemes was a key activity of the center. The Information Centre for PwD was shut down for want of funds in 2018. Efforts are being made to revive it

NIACL, Bengaluru: The representative who was the pillar of support for coordinating the camps stated that he “was spending half a day in a month for social capital.” Coming prepared with a bag of one and two rupee coins to give change for PwD who paid the premium of Rs. 356 was a small example of personal investment to the cause. The representatives of the NIACL, Bengaluru, were felicitated for their contribution to PwD in the program coordinated by the NIMHANS for the International Day for PwD in December 2016

Many beneficiaries needed help in filling the application forms. They were assisted by our students across disciplines posted in the PRS.

Limitations

Because the insurance coverage is for the entire family, the details of family members enlisted could have given more information on the family structure.

Future directions

Analysis of claims under the Swavlamban Health Insurance Scheme needs to be studied to know the utility of the scheme to PwD and their families.

While PwD are marginalized from the general public, persons with mental illness are a marginalized group among PwD. The barriers to quality health care among PwD and their families and the impact of schemes to facilitate access/utilization need to be studied systematically.

CONCLUSIONS

The Swavlamban Health Insurance Scheme was the first government-subsidized health insurance for PwD in India. It has been stopped and reasons were not made public. Currently, mental retardation, cerebral palsy, autism, and multiple disabilities are covered under the Niramaya Health Insurance Scheme and mental illness under the Ayushman Bharat: PM-JAY.

Mental health professionals need to take the lead in coordinating with various stakeholders so that PwD/caregivers can avail health insurance and other welfare benefits. We also need to lobby and advocate for making these schemes easily accessible for PwD.

Financial support and sponsorship

The Information centre for PwD located at NIMHANS where swavlamban health insurance enrollment camps were conducted was funded by

Directorate for Empowerment of Differently Abled and Senior Citizens, Government of Karnataka

Seva-In-Action, Bengaluru, Karnataka.

Conflicts of interest

There are no conflicts of interest.