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Post-Surgery Care And Services For PwD: How Ayushman Bharat Can Be More Inclusive

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The Ayushman Bharat Yojana, or Pradhan Mantri Jan Arogya Yojana (AB-PMJAY), has benefited numerous poor families since its launch by Prime Minister Shri Narendra Modi in 2018 to achieve the vision of Universal Health Coverage (UHC). The gigantic step was taken to meet the Sustainable Development Goals (SDGs) and its underlining commitment is ‘Leave no one behind’, which fits well with PM’s own slogan, ‘Sabka Sath, Sabka Vikas, Sabka Vishwas’.

Considering the importance of technology as an enabler, PM Modi, on 15th August, 2020, launched the National Digital Health Mission (NDHM), which aims to bring a paradigm shift in our healthcare system and boost AB-PMJAY. We appreciate this new development as digital health has great potential in reducing inequity in provisioning and distribution of healthcare resources and services. We all want a ‘Swasth Bharat’ and NDHM is undoubtedly the right step towards this goal. Hopefully, the government will take care of data safety and privacy issue, which are one of the top concerns of citizens.

Rehabilitation Is A Part, Not Apart From Healthcare

Here, I would like to discuss a crucial, but often ignored part of healthcare system — rehabilitation — without which no medical care is complete. The PMJAY includes three days of pre and 15 days of post hospitalisation,  a laudable step. However, not only in India but also in many other countries, comprehensive healthcare is conspicuously absent. Integration of rehabilitation and therapeutic services in mainline healthcare system is more important.

patients on hospital beds
Considering the importance of technology as an enabler, PM Modi, on 15th August, 2020, launched the National Digital Health Mission (NDHM), which aims to bring a paradigm shift in our healthcare system and boost AB-PMJAY.

Currently, rehabilitation exists as a ‘standalone’ segment under which patients have to bear a considerable financial burden post surgery or hospitalisation; it often represents an out-of-pocket expense, quite unaffordable for the most vulnerable and marginalised population including persons with disabilities, senior citizens and farmers. Rehabilitation often ends up being neglected from the healthcare system of most countries.

Since rehab is an integral part of hospitalisation, patients cannot be left to look at this separately, as an additional financial burden. If rehab is well integrated in government health systems such as Ayushman Bharat, it can provide rehabilitation services at all levels of the healthcare system. Therefore, it is expected of nations to align their health policies with the WHO’s ‘Recommendations on rehabilitation in health systems’, which talks about rehabilitation services at all stages of life.

Universal Health Coverage will not be fruitful if it is sheared from the rest of medical care. The Health Ministry and concerned departments such as National Health Authority (NHA) have to think about rehabilitation services as high-priority interventions so as to make AB-PMJAY effective at all levels – primary, secondary and tertiary healthcare.

Focus On Skill Development

In order to strengthen the rehabilitation segment, it is also crucial to look at the acute shortage of professionals, especially in rural areas. As per a 2017 report by the WHO titled The Need To Scale Up Rehabilitation, there are less than 10 skilled rehabilitation professionals per million people in low and middle-income countries. To correct this, we need to put more effort towards improving and expanding training opportunities, and promoting Community-Based Rehabilitation/Inclusive Development (CBR/CBID) to cut on costs. It will also help us achieve the goal of Universal Health Coverage by 2030, as envisaged by the SDGs.

As per a report by the US National Institutes of Health (NIH) Research Plan on Rehabilitation released in 2017, the development of systems that enable home therapy can minimise cost and maximise access as well as the amount of time that can be spent pursuing rehabilitation activities.

Accessible Rehab Helps All

If a surgery gives life to a patient, rehab enables them to live life once again. People recuperating from stroke, spinal cord injury, traumatic brain injury, etc. have to depend on rehab services for a long time. Persons with disabilities, particularly those with post-polio residual paralysis (PPRP), cerebral palsy and other neurologically disabling conditions, often have to depend on rehabilitation for most of their lives.  Therefore, accessible and affordable rehabilitation that incorporates accessibility in rehab centres is a fundamental requirement.

Accessible washrooms, right gradient ramps, handrails on stairs and ramps, accessible lifts, non-slippery surfaces, wide doors, sign language interpreters, sensitised professionals, etc. will also help make rehab experiences more inclusive and safe for diverse users. Therefore, inclusion of palliative care and rehabilitation under Ayushman Bharat will be of great help for patients with disabilities and the elderly.

Legal Anomalies

The Rights of Persons with Disabilities (RPWD) Act, 2016, covers issues such as social security, health and rehabilitation under Chapter V, and mandates in Section 27 (1) that respective governments and local authorities shall, within their economic capacity and development, undertake or cause to be undertaken services and programmes of rehabilitation, particularly in areas of health, education and employment for all persons. But, it is surprising that rehabilitation for persons with disabilities has been left to be implemented through financial assistance to Non-Government Organisations that is further subject to be within the economic capacity and development as well as discretion of the appropriate government and local authorities who may grant financial assistance.

Though Section 28 of the RPWD Act mandates research and development on issues that shall enhance habilitation, rehabilitation and other such issues that are necessary for the empowerment of persons with disabilities, it remains completely detached from the healthcare sector and left to be undertaken through individual and institutions. Such a fragmented approach to rehabilitation is bound to fail in realising the goal of ‘comprehensive healthcare’ for all.

Accessible ICT

The Covid-19 pandemic has considerably changed the world and disrupted the healthcare delivery, especially in services that require physical interaction, such as rehabilitation. As the government has now added Digital Health to its Ayushman scheme, Information and Communication Technology (ICT) has the potential to revolutionise medical rehabilitation with mobile applications and real time monitoring. However, if the ICT is not accessible, it would fail to benefit all. Therefore, empowering every stakeholder is crucial.

A paradigm shift in our healthcare system would not be possible unless healthcare is understood in its comprehensive form, right from diagnosis to effective rehabilitation.

This would also be in line with Chapter 1, Section 2(n) of the RPWD Act, 2016, which mandates accessibility in every mode of information to make it ‘inclusive’: “….information and communication technology includes all services and innovations relating to information and communication, such as telecom services, web based services, electronic and print services, digital and virtual services.”

Talking about the lack of accessible communication, Mr Som Dutt Tyagi describes his ordeal: “I am a deaf person and have to face a great deal of difficulty whenever I visit a hospital; staff and doctors remain clueless about what I say. Presence of a sign language interpreter would help many more people like me when we step out to seek these services.”

We need to ensure that that every document, app and website, including the Health ID, is in a format accessible to visually impaired users. Telemedicine is increasingly being used due to the pandemic. Closed captioning would help make communication between doctors and people with hearing impairment smooth and effective. Employing sign language interpreters at each level of care is also crucial to prevent communication gaps.

We need to focus on needs-based evaluation of the ICT and testing of new technology solutions suitable for rehabilitation in virtual healthcare environments that can be integrated with home healthcare. Emphasising on the need of improvement in the basic infrastructure and services, Ms. Sminu Jindal, Founder, Svayam, says:

“Ayushman Bharat and National Digital Health Mission are brilliant steps. However, we should also focus on the basics – making infrastructure accessible for all. We don’t find any accessible toilet in hospitals or primary healthcare centres. Accessible healthcare infrastructure is the fundamental right. Therefore, the appropriate governments and local authorities must ensure primary, secondary and tertiary healthcare infrastructure is accessible to all. No medical care system is complete without rehabilitation, so obviously it should be included in the system.”

Conclusion

The paradigm shift in our healthcare system would not be possible unless healthcare is understood in its comprehensive form, right from diagnosis to effective rehabilitation. To achieve this goal, rehabilitation has to be considered an essential part of healthcare. Rehabilitation of persons with disabilities cannot be implemented in isolation through discretionary grants by the Ministry of Social Justice and Empowerment to NGOs alone. There is no denying the fact that the voluntary sector has a lot of expertise in rehabilitation that can come handy to supplement the efforts of the nodal ministry i.e. Ministry of Health. However, there is a need to prioritise integration of rehabilitation with the Indian public healthcare system at the earliest so as to make the AB-PMJAY effective, affordable and accessible for all.

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  1. Waqar Wani

    Hi sir, i like the way you analysed things here about Ayushman Bharat. If you allow, i would like to publish your article in our magazine ie “Street Voice Magazine” . The September’s editon of magazine will be published on 10th of sept.
    You can whatsapp me your reply at 6005920432.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

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Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

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MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

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A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
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Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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