Introduction: Defining The Problem
Residential institutions for people with disabilities (or indeed any facilities or services for persons with disabilities or other groups disproportionately affected by risk) around the world have been created with the best of intentions – often designed to provide quality care, support, opportunities, treatment (and rehabilitation / therapy where needed), a safe harbour, and a place to grow and learn. The well-intentioned founders of such places could have never foreseen that the institutional model would, by its very design and structure, could ultimately and inevitably result in misery, deprivation, and loss of human dignity and potential In our very midst, the complex of Delhi’s Asha Kiran provides an example of just such a situation of a service meant to provide decent lives for its residents, and yet has proven to fall short of the mark.
Established to serve both children and adults with significant developmental disabilities who have been abandoned by their families, lost, orphaned, or unwanted, the facility has been plagued with familiar problems of rampant overcrowding, deindividualization, over control of residents, rights violations, and poor morale of staff and residents. Efforts to make improvements have been short-lived and the institutional ways seem intractable.
In large measure this is not because of a failure of individual people, administrators, or staff The problems faced in Asha Kiran are problems faced by segregated institutions around the world, and they are problems which are built into the model Segregated institutions the world over result in consistent outcomes.
Once people with disabilities are placed all together, isolated from society, a familiar litany of problems result in poor outcomes for the people. The unique individual identities of the people begin to get lost in the minds of everyone, and they begin to be deeply de-individualized Freedoms and rights of individual people start to be flagrantly violated in the name of control and management. Management of a large group of disabled people becomes the top priority, and developmental potential that every human holds becomes overlooked.In the name of protection and safety, the people living there become surveilled and guarded, kept apart and away from typical people and typical Indian society Because of the lack of regular exposure to typical life, the people served do not learn how to be in regular society, and are further ostracised The staff tend to be overwhelmed by the needs of so many people , and begin to distance themselves from the people. The cycle of devaluation is almost inescapable.
Our recommendations for improvements at the Asha Kiran complex are rooted in a deep commitment shared by all members of the team that there is certainly a need to improve conditions at Asha Kiran The recommendations of this report, if implemented,
will result in better lives for the people living at Asha Kiran, at least for now In fact, institutional improvements are necessary to make life more bearable and even survivable for the people living there at the present. However, it must be communicated clearly that the way forward is to shift our mindsets towards the simple fact that large-scale institutions such as Asha Kiran are fundamentally unfixable. We must indeed put in place life-affirming changes that will make things better for the people living there now. They deserve and need better. However, we also must understand and apply our efforts towards alternatives to large congregate institutions such as Asha Kiran, and set the foundations for workable community-based alternatives such as well-supported family-based care, kinship care, supported living, and even small-scale community-based group living for people.
The Way Forward
Asha Kiran is the largest institution in India for people with intellectual and developmental disability People live highly segregated lives and are functionally imprisoned for life with little hope of change Education, livelihood, family, relationship, and citizenship roles are beyond hope for most people living there, and, as has been sufficiently documented, little progress has been made with the best of efforts.
There is an energetic and emerging leadership in India, with the enthusiasm to spark real change for and with people with disabilities. While we must work to improve conditions and mindset at Asha Kiran, we also must propose that large-scale institutional models hold little hope for change, and we must seek to develop community-based models of support.
Over the last few years, we have seen the advancement of new ideas, and new models of service that support a radical shift in perspectives and design. We propose that people with even the most severe impact of disabilities can live within communities That families, with holistic support, can and will care for their family members, and that people with disabilities deserve to contribute, to belong, and to have a fair chance for full, meaningful lives in their communities.
It is acknowledged that this is a long-term vision which must be committed to and built over time. Carefully done, our work together will serve as a catalyst for the development of a service system in India which better safeguards vulnerable people, establishes thinking which works towards good things, respects the voices and perspectives of people with disabilities and their families, and facilitates India towards a democracy that works for everyone.
There are beacons of hope across the country to show us the way forward Pathways to community living have been forged across India in the ‘Home Again” project, developed by The Banyan and currently operationalized across 9 states by The Banyan and 15 civil society organisations. The state of Tamil Nadu has adopted it as an approach. Close to 600 persons have transitioned from custodial institutions such as mental hospitals, beggars’ homes, rehabilitation homes, and destitute homes. Well-researched and well documented, this approach has been applied to women and men at risk of institutionalisation, or institutionalised, because of mental health disorders 1
Modelled from the work at The Banyan and adapted for people with significant intellectual and developmental disability, a project in Uttarakhand called “Community Lives” has helped women leave a government shelter home and establish themselves as full members of the community, Indeed, evaluation shows that those women are better off in everyway that we can measure A robust family reunification program has helped 20% of the institutional population be reunified with families, with a 100% success rate after more than one year. Other such beacons of hope have appeared across India , and we invite you to take heart at what is possible.
As you read the recommendations in the ensuing report, please remember that improvement of today’s institutions, starting with Asha Kiran, matters. However, custodial institutions in India do not solve the problem of how we can help the most deeply marginalised peoples of this nation, those with significant impact of developmental disability, take their place in Indian society, and contribute the gifts that their presence and engagement brings to us. We must look to the community for this, and advocates and activists across India stand at the ready to create new social forms that work for everyone.
1 Guidance on community mental health services: Promoting person-centred and rights-based approaches , WHO 2021 https://www.who.int/publications/i/item/9789240025707
Asha Kiran as microcosm of what ails India’s care support structure : THEMATIC RECOMMENDATIONS
Inputs from :
Poonam Natarajan, Vidya Sagar, Tamil Nadu.
Radhika Alkazi, Astha, Delhi
Elizabeth Neuville & Geeta Mondol , Keystone Institute India, Delhi.
Shabnam Aggarwal, Anandini, Delhi & Chandigarh.
Deepika Easwaran, The Banyan, Tamil Nadu, Kerala & Maharashtra.
Sudha Ramamoorthy, Special Educator
Rajive Raturi, Consultant and support from many others, too numerous to name.
RATIONALE
Conditions prevailing in Asha Kiran home for intellectually impaired in Delhi have been under scrutiny since 1997, by high powered committees as well as National institutions for protection of child rights, namely;
● Government appointed High Powered Committee in 1996;
● The 2006 Audit Report of Asha Kiran;
● The NDTV expose in 2007 and the unnatural deaths reported year after year in the media ;
● The 2010 report of the DCPCR;
● The 2010 report of the NCPCR;
● The 2010 IHBAS report;
● The report of the surprise visit done by the High Court appointed team in 2012;
In spite of these inspections and recommendations there was little or no improvement in the conditions of the residents in the home and the appalling state of affairs in the Asha Kiran Home for mentally challenged adults and children in Delhi was brought to the attention of the Delhi High Court in 2012
Dissatisfied with the orders of the Delhi High Court, experts from Civil Society approached the Supreme Court vide Civil Appeal No. 11938 of 2016 (Reena Banerjee Versus Government of NCT of Delhi & Ors.)
Despite the filing of the counter affidavits which produced little data and even less enthusiasm nationally to improve the conditions of homes the situation remained unchanged. Recognising the gravity of the problem and the condition of homes for abandoned, orphaned and destitute children and adults with intellectual disabilities as well as persons living in homes for mentally ill across the country, by order dated 26.3.15 the Supreme Court expanded the scope of the Petition to include all States and Union Territories.
Further, on 8 12 16 the Supreme Court gave further directions for evaluation, treatment and upgrading of mental health services by the governments. Replies filed by the Government have been tabulated and filed in the Supreme Court and reveal a pathetic situation across all homes in the country with no standardisation of programmes on caregiving, therapy, education, health,vocational training, recreation and nutrition.
Alarmingly there are no exit policies and little or negligible efforts made by CWC to reinstate abandoned and destitute persons with families and most are destined to leave the homes only on death.
It is high time that accountability is fixed and attention is paid to these children and adults languishing in homes run by the Government and NGOs as well as charitable organisations and all efforts made to ensure a life of dignity and worth to the residents
WHAT DISABILITY LAW SAYS
The UN Convention on Rights of Persons with Disabilities, ratified by India in 2007, in Article 14 - liberty and security of the person states;
1 States Parties shall ensure that persons with disabilities, on an equal basis with others:
(a) Enjoy the right to liberty and security of person;
(b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty
2. States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others,entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of this Convention, including by provision of reasonable accommodation
India’s Rights of Persons with Disabilities Act of 2016 states;
3
EQUALITY AND NON-DISCRIMINATION
(1) The appropriate Government shall ensure that the persons with disabilities enjoy the right to equality, life with dignity and respect for his or her integrity equally with others.
(4) No person shall be deprived of his or her personal liberty only on the ground of disability.
5. COMMUNITY LIFE.
(1) The persons with disabilities shall have the right to live in the community.
(2) The appropriate Government shall endeavour that the persons with disabilities are,—
(a) not obliged to live in any particular living arrangement; and
(b) given access to a range of in-house, residential and other community support services, including personal assistance necessary to support living with due regard to age and gender
The Mental Healthcare Act (MHCA), 2017 also reiterates the importance of living in the community.
SECTION 19. RIGHT TO COMMUNITY LIVING.
(1) Every person with mental illness shall,—
(a) have a right to live in, be part of and not be segregated from society; and
(b) not continue to remain in a mental health establishment merely because he does not have a family or is not accepted by his family or is homeless or due to absence of community based facilities
(2) Where it is not possible for a mentally ill person to live with his family or relatives, or where a mentally ill person has been abandoned by his family or relatives, the appropriate Government shall provide support as appropriate including legal aid and to facilitate exercising his right to family home and living in the family home
(3) The appropriate Government shall, within a reasonable period, provide for or support the establishment of less restrictive community based establishments
including half-way homes, group homes and the like for persons who no longer require treatment in more restrictive mental health establishments such as long stay mental hospitals.
HEALTH & EMOTIONAL WELLBEING
Children and persons with disabilities who come into Asha Kiran live with a range of impairments. While intellectual disabilities run across all groups there are residents who have cerebral palsy, hearing, vision, and locomotor impairment as well as mental health conditions Many residents coming into the facility are likely to have been abandoned or were homeless. Even when they come through other hospitals or other homes, the trauma of being abandoned, being homeless and all that they may have faced on the streets, affects their mental and physical health.
Many residents at Asha Kiran have complex health care requirements and are on regular medication for epilepsy, drugs prescribed by psychiatrists, medication for acute chronic infections such as respiratory tract infections, skin infections and illnesses such as TB. Many children and adults are malnourished when they first come to the facility.
However, Asha Kiran is not a hospital, nor should it become a hospital with a focus only on curative aspects of health and crisis intervention. Instead, better health for residents at Asha Kiran would involve a focus on the determinants of health with preventative, promotive, therapeutic, and curative aspects of health being planned with a long term vision and implemented.
Preventative:
Factors that can prevent ill health include good nutrition, adequate food and clean drinking water, hygiene, cleanliness of the facility and the people living there Reports by IHBAS have also indicated that the health issues faced by the residents are not always intrinsic to the disability of the person. They have indicated a rise in health care issues during winters and that measures need to be taken to address these. Provisioning of proper bedding and covers to protect from the cold and adequate clothing along with other factors need to be kept in mind in the planning to prevent health issues.
De congestion of an overcrowded facility is a major strategy of preventing recurring infections and illnesses in the facility.
There are a number of persons at Asha Kiran with high support needs who have multiple disabilities resulting in restricted mobility. Regular movement, posture change and therapy besides any medical intervention that is recommended are important in
preventing further disability and preventing contracture Meaningful activity on an everyday basis for all residents is one of the best determinants of good health
Promoting Well Being as a Priority
It is important to have a policy and a plan to promote well being amongst the residents of Asha Kiran and other such facilities. Many residents have faced abuse including sexual abuse before they enter the facility Some residents may become violent or aggressive or harm themselves These behaviours are to be understood in the larger context of the difficulties they have undergone.
Clear protocols that do not involve using restraints or aversives or violence to deal with such situations need to be developed. Access to mental health care professionals and counsellors is extremely important
Some of the other important aspects of promoting well being include:
● Nurturing self esteem and building resilience
● Enabling self determination by building on the participation of children and adults
● Enabling the building of strong and nurturing relationships amongst residents and amongst residents and caring staff
● Protecting the physical and mental integrity of residents
● Creating an atmosphere of safety and security
● Being involved in meaningful activity
In creating this the importance of moving out of the institution and interacting with society and community should not be underestimated.
Creating systems for redressal of grievances, whistleblowing and reporting any instances of abuse are also necessary to ensure no rights of residents are violated Training sessions on rights must be done with residents to create awareness about their rights and what constitutes abuse and the recourse in case of any violation.
Early Detection
Protocols of regular medical screening, identification of children and adults who may be at high risk of a crisis or who may need more attention because of a condition need to be developed in a facility such as Asha Kiran
Caregiving and other staff members must also be trained and sensitised to be able to pick up early signs Caregivers are likely to know the residents and their ways of communicating much better than others.
Residents of Asha Kiran ( children and people with disability) should not be seen as passive recipients of care. Instead, every opportunity must be taken to inform children and adults of how to take charge of their health and when to approach the doctor.
Systems For Regular Monitoring and Review of Health Plans
Large numbers of residents of Asha Kiran are on regular medication for conditions such as epilepsy, TB, HIV and mental health conditions. Reports of the AEGP and IHBAS (2010) underline that significant numbers of residents, including children, were on more than one antipsychotic drug
Systems need to be put in place for regular disbursal of medication Equally important are systems of review of medication and interventions required. It is important to prevent undue psychiatrization and medicalization of normative behaviour.
Availability of Rehabilitation Professionals and Assessments
Along with doctors and nurses, the residents of Asha Kiran will also require occupational and physical therapists, speech and language therapists and counsellors to be part of the larger team that supports them.
Coordination between team members in terms of assessments as well as planning is extremely important if the person with disability is not to be subjected to multiple isolated interventions and assessments Further coordination between doctors/ therapists and other professionals linked with the care of the residents is important to ensure a holistic approach to treatment and evaluation.
Put Active Referral System in Place
A dedicated referral system for anticipated emergencies and illnesses and seriously ill residents needs to be in place Systems must be put in place to ensure that people from Asha Kiran are attended to on priority.
The doctors at the hospitals identified should be sensitised on disability, especially in the area of diverse forms of communication. Talking to the person with disability under their care, explaining what is being done, taking consent, asking them questions and how they are feeling are important to the treatment of the person Handling, lifting, carrying are again important aspects that hospital staff and functionaries of the institution would benefit from.
NUTRITION
Nutrition is key to good health, growth and development and must be addressed by professionals who need to chalk out diet plans for each group of residents. The children and adults must be made part of the decision-making process in working out menus based on the diet plans. The specific requirements of persons with high support needs or those who have unique dietary requirements must be on-boarded while working out diet plans
Constitute a Diet Committee with Residents as Members
There is an urgent need to ensure that no resident remains malnourished.
A Food Committee that looks into the nutritional requirements for different groups of residents and plans the meals can be set up. The residents must also be part of the committee and active decision makers in all different aspects of planning food and diets for residents. Children would not like to eat khichdi or dalia every day. A lot can be done within prescribed budgets to make the food more appealing to the residents. Instead of one menu for all the residents, it could look into the needs of at least children and adults separately along with the people who require special diets
Along with de centralization of living spaces it is possible to see whether cooking facilities can also be decentralised with cooking facilities in different dormitories and living spaces. In the long run this will make it easier to cater to special requirements of the individual and enable more participation by the residents including children.
Planning and coordination of responsibilities to ensure that people get what they require; who will support the person to eat; if the resident requires to be fed smaller portions, every couple of hours- who can ensure this is done; what is the time when food needs to be served…all these need to become part of the system and the manual that is being written again should highlight these aspects to prevent it becoming an ad hoc system.
As part of the independent living and life skills program, residents can be enabled to eat and drink as independently as possible. Necessary modifications in seating, tableheight/positioning/ cut-out tables, plate, bowl, spoon, straw for drinking water, sipper cups etc. must be made based on an assessment of individual requirements.
Cooking and making food is a very major life skill and many residents of Asha Kiran would be able to contribute to the process This should be encouraged as it can become an avenue for work and jobs after training.
HIGH SUPPORT NEEDS & INDIVIDUALISED CARE
There are residents in Asha Kiran who are confined to beds or just lying on the floor. These residents urgently need assessments by a Multidisciplinary Rehabilitation Team of Physio, Speech, Occupational Therapists and Special Educators They need to recommend individual needs of assistive devices, therapy and educational programmes Therapists and teachers must ensure these programmes are implemented.
Residents lying all the time on beds or on the floor are leading extremely passive lives and are at risk of developing contractures and deformities. They will also suffer from poor health and this may be the cause of early and untimely death. At present, there are hardly any wheelchairs or other devices which can enable residents with multiple disabilities and high support needs to participate in their community
People with high support needs can do many tasks, if they are provided with appropriate aids and adaptations. Some may be able to work and get employed. Those with a penchant for structure and order could opt for assembly line tasks. At present the staff is not trained for supporting people with high support needs These modules need to be included on an ongoing basis Peer support can also be developed, for support of wheelchair users and people using any other devices.
EDUCATION AND LIFELONG LEARNING
Asha Kiran as envisaged by the expert group is not merely a home for care and protection. It has a very large rehabilitative component aimed at enhancing the potential of persons with disabilities besides providing them educational, recreational and vocational facilities in an endeavour to equip them for supported independent living
All programmes, whether they are in the domain of education, skill building, vocational training, life skills training etc. must be designed keeping in mind the rights of the persons and work towards ensuring a better quality of life, optimising potential and building independence
Institutions such as Asha Kiran house children and adults as well as senior citizens Children and persons with disabilities come into facilities such as this at different points in their lives. Every person can learn and they do; provided the opportunity to learn, teaching material, facilities and an environment of learning are put in place.
Children between the ages of 6 to 14 have a fundamental Right to Education as per the RTE Act 2009, which is extended to the age of 18 for children with disabilities Further the Rights of Persons with Disabilities Act 2016 outlines in detail the actions that need to be taken to realise this right as well as the right to secondary and higher education. The
UN Convention on the Rights of Persons with Disabilities further outlines the right to lifelong learning
Importance of having a plan:
Nothing should be ad hoc, all programmes must be structured and goals for each child/person should be maintained.
Children as young as 6 years enter Asha Kiran to remain there throughout their lives, unless they are reunited with their families, which is only limited to a few.
All children, including those with high support needs living in Asha Kiran must be enrolled in the schools nearby- government, private or the special school run by government or civil society organisations. A resource mapping of all education facilities in the vicinity of the institution should be completed and the schools and institutions sensitised to the requirements of students from Asha Kiran
Going to school will give the child an opportunity to socialise, learn and know how to deal with the outside world and every child must have this opportunity. Accessible transport with trained support persons, for going and coming must be arranged and children must attend school regularly
All children enrolled in schools must be extended the necessary support and accommodations in class so that they are able to cope with the curriculum, complete assignments and assessments. They must give their exams with the necessary individualised support and accommodations [ which includes extra time, scribe, modified question paper, modification in evaluation methods, wherever necessary.]
A dedicated social worker could become the link person between the school and the personnel at Asha Kiran to :
● Ensure a whole school experience for children i.e. ensuring that they are part of all school activities.)
● Ensure the regular attendance of children at the school
● Follow up work done in school at Asha Kiran - this would ensure that the children are truly learning.
The teachers and schools must receive support on creating inclusive classrooms and child-specific teaching learning methodologies from trained professionals and organisations working with children with disabilities
Social Workers along with disability specialists must work with the teachers as well as children in the school, to sensitise them towards the needs of children with disability They would also be the key persons for the children in supporting them to work towards forging friendships and peer group formation, and in getting holistic school experience. Buddy systems in class and support persons beyond the class, during play activities, in the activity classes [ art, music, theatre, dance, hobby classes etc.] must be put in place.
Teachers would need to be appointed by the institution and post-sensitisation on disability and diversity, teach the NIOS curriculum to students who require it Students should have a regular time table for this learning to take place. All necessary support systems, modifications, aids/appliances/ devices; teaching-learning material in alternate modes; modified content and individualised sessions and all other necessary child-specific material must be made available.
Children who require a more flexible approach to education and adults who come into Asha Kiran without much exposure to education, or are unable to attend school regularly due to health reasons, must be enrolled with the NIOS [ National Institute for Open Schooling]. Under the NIOS system, they can choose the subjects of their choice and sit for an exam when they are ready for it. Some of these subjects include those that can lead to a vocational stream.
Children who enter Asha Kiran,must be prepared for school, through a bridge course Trained teachers must hold classes [Monday to Friday] so that children are able to cope with learning at age-appropriate level. These teachers must also provide after-school support to children attending regular school. The teaching must be tailored to address the needs of each child. Teachers would also need to be appointed to transact the NIOS curriculum to individuals enrolled with the system
Life Skills & Independent Living Programme for All
A structured life skill training programme must be rolled out for all residents. These are skills that are essential for everyone and an integral part of independent living. Individuals would require opportunities to put these skills in place and these need to be provided
Functional Literacy programme
A structured functional literacy programme must be rolled out to all persons above the age of 14 who have not had access to schooling, especially adults. This must incorporate components of literacy, functional math, life skills including concepts of money and time; language and communication skills and other skills necessary for daily living