|Year : 2021 | Volume
| Issue : 4 | Page : 346-351
Vision for total care of persons with developmental disabilities
R Srinivasa Murthy, B Divya, S Nischitha
Project ENRICH, Association for the Mentally Challenged, Bengaluru, Karnataka, India
|Date of Submission||11-Nov-2021|
|Date of Acceptance||11-Nov-2021|
|Date of Web Publication||25-Nov-2021|
R Srinivasa Murthy
Project ENRICH, Mental Health Advisor, The Association for the Mentally Challenged, Bangalore-560078, Karnataka
Source of Support: None, Conflict of Interest: None
During the last 75 years of Independent India, there has been significant progress in the care and recognition of the rights of persons with disabilities (PwDs). The setting up of the National Institute for Mentally Handicapped in 1984, Rehabilitation Council in 1992, the National Trust in 1999, the revision of the legislation covering the rights of the PwDs in 2016 are all indicative of the recognition of the rights of persons living with developmental disabilities and their caregivers. However, in spite of the articulation of a need for a National Plan, over four decades back, there is much that needs to be addressed. The most recent program to disseminate from village level to national level, the rights of persons with disability is a positive step. There is an urgent need to initiate pilot programs in geographically limited areas to develop care programs from birth to the end of life. This article presents a comprehensive vision for the future with the hope this will find support from the public, professionals, and policymakers.
Keywords: Autism, caregivers, intellectual disability, legislation, support
|How to cite this article:|
Murthy R S, Divya B, Nischitha S. Vision for total care of persons with developmental disabilities. Indian J Soc Psychiatry 2021;37:346-51
|How to cite this URL:|
Murthy R S, Divya B, Nischitha S. Vision for total care of persons with developmental disabilities. Indian J Soc Psychiatry [serial online] 2021 [cited 2021 Dec 3];37:346-51. Available from: https://www.indjsp.org/text.asp?2021/37/4/346/331134
| Introduction|| |
The last 75 years of Independent India have been a good period for persons with developmental disabilities (DD). For example, the legislative position is a good illustration. Till 1987, mental retardation was part of the Indian Lunacy Act 1912, along with “insanity.” Everything changed initially with the enactment of the Mental Health Act in 1987 and subsequently the Persons with Disability Act, 1996, which was further revised in 2016. The setting up of the National Institute for Mentally Handicapped in 1984 was a milestone. The period of 1990s was a period of rapid changes. The enactment of disability law, the setting up of the National Trust, the Rehabilitation Council of India changed the status of DD radically. The last one decade has seen further revision of the law in 2016 and a number of initiatives at the level of States and Federal level for persons with all disabilities and their families. A good illustration of the recognition of persons with disabilities (PwDs) and their caregivers is the recent priority for vaccination. A range of initiatives has contributed to this progress [Table 1].
|Table 1: Forces that have shaped the lives of persons with disabilities and their caregivers|
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However, there are a number of areas requiring urgent attention. This article presents a vision for total care of persons with DD and their caregivers. A review of few examples from history, the present situation, will illustrate the current challenges followed by a 20-point action plan.
We are living in a challenging time and this time is most challenging for persons with DD. The recent report of the World Hunger index which places India at position 101 out of 116 countries brings home the long journey that we have to make as a country to reach a better position in the world situation and better quality of life for all. It is ironic that in 1974, one of the authors R. Srinivasa Murthy (RSM) had written an Editorial on “Mental retardation-scope for prevention (nutrition) concluded as follows: “In the final analysis, nutritional problem, like mental retardation, has to be considered in the social perspective. For the retarded development when viewed as a problem of the individual, may appear unimportant, but when this occurs in a sizeable proportion of the community, it must be considered a serious consequence from the point of view of national development/the cost of enforcing the preventive methods should prove to be only a small part of what it would cost the society in terms of the loss of productivity and social liability of this group when they grow up to become adults.”
It is unfortunate that nearly 50 years, later we still have malnutrition, stunting of growth which can are easily addressable and can limit intellectual disability along with other benefits to the individuals and the community.
In 1979, Dr. B. Shankaran, DGHS, Ministry of Health set up an “Expert Group on National Planning for the Mentally Handicapped in India [Figure 1].” The goal was to “remedy the deficiencies found in every aspect of services for the mentally handicapped.” The committee was commissioned to produce a comprehensive National Plan for the development of services for the mentally handicapped in India. The Group met from November 12 to 17 and produced a comprehensive report of 23 pages along with over 200 pages of background documents [Table 2].
The third document we want to refer is a recent editorial by Prof. Chavan titled, “Issues of Persons with Intellectual Disability are Bigger than Just Educational and Health Needs.” In this insightful paper, he recognized the need for a wide range of services, including the importance of law enforcement agencies, addressing poverty and disability, and accessible health services. He specified the following areas for immediate attention PwDs to live independently, in their own places, not in nursing homes or institutions. PwDs need financial security, and they need to be paid at par with other employees, protection from physical harm and exploitation. Disability policies and programs are implemented by people who understand the needs and priorities of PwDs. Access to medical care and integrated approach to training, executive, legislative, medical, and corrective system.
| Need to Look Ahead|| |
It is appropriate to recognize that the current situation is one of fragmentation of services and programs. In a way, for the large majority, getting comprehensive, continuous, coordinated, compassionate care (5c's) is still a dream. This is the next step in disability care in the country. We want to recall this vision of Prof. Chavan.
In December 2018, as part of visit of one of the authors (RSM) to the Department of Psychiatry, GCMH, Chandigarh, he worked with Prof. Chavan, and his team of Government Rehabilitation Institute for Intellectual Disabilities (GRIID) and Department of Psychiatry, to develop a comprehensive plan for “Tricity” (Chandigarh, Mohali, and Panchkula) to develop a model for care from birth to grave of persons with DD. The plan included 20 levels of interventions. This dream needs to be realized in the coming years, along with the development of similar initiatives for rural areas. This will be a fitting tribute to the professional commitment of Prof. Chavan.
The positive outcome of such an effort can result in total coverage of services, lifetime care and support for the PwDs and their families, and multi-dimensional, multi-disciplinary contributions towards empowerment of individuals, families, communities, society at large, with the involvement of all institutions like education, housing, employment, etc., state administration and international organizations. The initial plan developed in 2018, is updated and fully developed.
| Vision for the Future|| |
The following are the components of a life-course approach to support the persons with DD, their caregivers, and the community.
Primary prevention of developmental disabilities
Risk factors of DD are multifactorial and interventions also have to be multidimensional and multisectoral. Specifically, antenatal care, Iodized salt, and immunization, nutrition, early stimulation through child care centers, early recognition, and treatment of illnesses like epilepsy, brain infections, etc. Availability of universal health coverage will limit disabilities as a consequence of other illnesses. Education of Anganwadi/Balwadi personnel, all categories of health personnel, and school teachers can result in early identification, early interventions along with empowering of parents with caregiving. The November 10, 2021, initiative of the Ministry of Social Justice and Empowerment is a good start.
Programs to increase public awareness to minimize stigma and discrimination
Understanding and acceptance of the persons with DD as citizens are important to assure the rights of persons with DD. Campaigns of awareness-raising through the mass media is important. The emphasis should be on the personhood of the persons with DD and their rights.
All newborn children should be screened for identifiable disabilities/diseases
Screening helps to identify children of medical conditions such as Down's syndrome and autism. Experience has shown that disability detected and intervened in early stages have a much better quality of life. Wide dissemination of developmental milestones along with culturally sensitive screening approaches will be effective. There are beginnings made in this area by the department of biotechnology to screen children for genetic conditions.
All individuals, families, should receive all welfare benefits
Since 1977, there is recognition for support to family members with a person with DD. Both Central and State governments have provided benefits such as pension/unemployment pension, scholarships, insurance, education, and employment reservations. However, there are wide variations in the available supports across the States and UT; s and their implementation. Urban/rural populations are not fully aware and are not able to access the benefits. There are many barriers to reach out for the benefits they are eligible for. There is a need to make these supports reaching the families, through the proactive efforts of government functionaries and the voluntary organizations. The new initiative of the Rehabilitation Council of India is a very important start toward this goal.
All children with developmental disabilities should be identified by age of three years (in contrast to the present identification at the age of 6 years and above)
Early identification and intervention is the key to a better quality of life of persons with DD. Most of the DD can be identified by the age of 2–3 years through parental education, assessments as part of well-baby clinics. There is a need for educating parents and teachers about the importance of observing, recognizing developmental delays and they also should be encouraged to reach professionals as early as possible. The school-based health program, Rastriya Bala Swasth Karyakrama, covering a large number of school children is an important program toward this goal of early identification and early intervention.
Every child with developmental disabilities will be included in an early stimulation program
Early intervention services are essential to support children with DD. It is vital to provide parents with the right kind of information about early intervention programs as early as possible to avoid a child from having additional problems. Community-level volunteers and other community resources can be valuable toward this goal.
All families will be empowered through training and sharing of skills to care/train children with developmental disabilities and their own personal emotional health
Family is the strength for individuals. Families are changing worldwide including India. All parents who are the caregivers need support. Lack of support increases the burden of caring for children, especially for mothers. Many studies have documented this increase in emotional needs of caregivers. Fathers of children with special needs hesitate to share caring. The following actions such as (i) creating opportunities for sharing their feelings; (ii) creating opportunities for personal emotional care; (iii) sharing of skills to master the challenges at the home/community; and (iv) help-seeking guidelines. The approach from the clinical perspective should also change from client-centered to family-centered and strength-based interventions to empower the parents with the necessary skills to care for their children with special needs. Interventions, in this critical area, need to relevant in the local, cultural, social, and economic context of families. At The Association for the Mentally Challenged, Bengaluru, the project, (ENRICH) to “empower” caregivers with skills of self-care for emotional health as well as understanding, caring, and planning for the future of persons with DD. We will be glad to share details of this initiative.
There will be inclusive schooling for all the children with developmental disabilities
RPWD Act, 2016 emphasizes the goal of inclusion is to be able to provide the necessary support individualized or otherwise in environments and reasonable accommodations that maximize academic and social development. To achieve the practice of inclusion schooling system effectively barriers to inclusive education should be minimized. Understanding that accessibility needs to go beyond corridors, stairs, and ramps to playground areas that need to be developed. Counseling the parents on the components of inclusive education and giving them an opportunity to share their problems with the teachers or counselors at school level is needed. Teachers need to be sensitized about inclusion to manage and teach in the classroom better. In every school, there should be special teacher(s) and activity centers.
Children who cannot be accommodated in an inclusive setup should be enrolled in education and training in special school/National Institute of Open Schooling/home-based care/community school
Every child undergoes the assessment based on the severity the professional, psychologist, and special educators can recommend and educate the parents about special school/National Institute of Open Schooling/home-based care/community-level programs to work with their children. The disabled children who are placed in special schools should be considered for integration into common schools once they acquire the communication and daily living skills at a functional level.
There will be daycare services for those in need of services
Daycare services became a boon for working mothers of children with special needs as well as for the persons with DD. Daycare services are important to improve nutrition and health status of children; to promote physical, cognitive, social, and emotional development of children; to educate and empower parents/caregivers for better childcare; and give the caregivers respite from caring. There is also a need for daycare services for adults with DD.
Evaluation programs for the transition from childhood to adolescents and independent living in different domains of life
With better services, a larger proportion of persons with DD are reaching adolescence and later on to adulthood. As the child grows into an adolescent, parents also experience stress and worry about their future. Parents often find difficulties to find the appropriate resources to support and help their children to adjust to the transition phase. Programs suitable for the different social-economic and cultural groups needs to be developed in the community. It is important to hold the hands of the parents to empower them through sharing knowledge in a wide range of options such as vocational rehabilitation, disability management, and inclusion to shape the future of their wards.
Appropriate prevocational training program (acceptable to the individual and family)
Persons with DD need skill-based programs as early as feasible, based on their interests and needs in the industry. Special schools/integrated schools have to mandatorily add vocational training programs as part of their curriculum. Providing certificates on the level of support needed for the individual with special needs to work independently shall help the employers increase confidence to hire them more often. Action research in this field is required immediately.
Availability of comprehensive medical care
Persons with DD need compressive, continuous, and coordinated medical care, more than the general population because of the comorbidities. This should be provided as a right. Programs like the Niramaya health insurance are valuable. It is important to create awareness about the availability comprehensive care and health insurance like the Niramaya program of the National trust. Services should include health promotion, diagnosis, treatment, prevention, referral to other providers, rehabilitation, and emotional, social aspects of the individual.
Provision of aids and appliances
Persons with DD need support of aids and appliances. This need is recognized and support is available in a limited way. One of the goals is to empower persons with DD, to be functional through assistive devices and appliances. The use of technological advances in aids and services is improving the quality of life with respect to mobility, communication, and daily activities of individuals with special needs. The important step here is to identify the specific services or types of support from the assistive devices required for each individual and take the necessary steps to provide them. All the States/UT's need to increase the availability and information of appropriate support of devices and mobility aids along with easy accessibility and maintenance services.
Vocational training and employment
Every child with a disability has the ability and rights to get a suitable job to fully utilize the skills. Vocational training when given with appropriate support can help to lead an independent life. We need more vocational trainers and counselors to help children with disabilities to place them in appropriate jobs based on their functional skills level and requirement in all kinds of regular sectors and should be paid minimum wages and treat them equally. Government takes appropriate measures and removes barriers which slow the process of successful placement and welcomed to be a part of the community.
A range of residential services for those needing these services
Some persons at different life course period with require residential support. It is like a “home away from home.” Some organizations are experimenting to encourage group home options where 4/5 individuals with special needs living together with supervision. The Government should create residential facilities, close to the communities.
Legal aid throughout the lifespan of the individual and their families
Persons with DD and their families need additional legal support. There is a need to educate Nongovernmental Organizations, professionals, psychologists, and special educators, about the available legal aid. Structures and processes should be created to ensure that persons with DD and their families can access legal aid services.
Monitoring, evaluation, and creating new understandings of developmental disabilities
There is limited information about all the earlier outlined areas both at the National level and much more at the local levels. Robust structures and processes should be built to monitor, evaluate and continuously create new understanding of DD at the level of individuals, families, and communities. Utilization of indicators of care and implementation of programmers and human rights will help understand the ground-level situations. What we can measure, we can change. Such a list is given in [Table 3]. Such a dynamic approach will create Indian models of care.
Developmental of appropriate human resource development for above services
The need for a comprehensive program like this will require a wide range of human resources from community-level volunteers to specialized personnel for specific services. A plan to identify the different personnel, the skills needed, the level of care they can provide, and the limits of care need to be developed. Every attempt should be made to utilize all the community resources in this area. An another need is for the training centers at state levels as much of the personnel will have to have the knowledge of the local language and culture. The W. H. O. optimal mix of services is a good guide for such planning [Figure 2].
Documentation and dissemination of information
Documentation and dissemination of information serve many purposes such as promotion and encourage to practice effective care methods; recognition of the gaps in the field which needs further research; improve the quality of care and reduces errors from past practices and record information that can help support persons with DD and their families.
| Looking Forward|| |
There is significant progress in the care of persons with DD is seen in the changes in the city of Chandigarh. In 1972, there was facility for the care of persons with DD, and in 2021, the GRID provides comprehensive, coordinated, continuous care for over 10% of all persons of DD in the city. This is a major development. The feasibility and practicability give hope that the lessons learnt at GRIID can lead to a National level program.
The challenges of caring for persons with intellectual disabilities and autism are seen in both rich and poor countries. Excerpts from a recent article about the United Kingdom situation, illustrate this. A 2021 Health and Social Care Committee report noted that “the current system of community support in England is “broken,” “systematically failing” or otherwise inadequate“… High-quality community support is essential to prevent hospital admissions and facilitate successful discharges. The building the right support plan stated that the proposed bed closures would release “tens of millions of pounds which will be invested in community-based support to prevent hospital admissions.”… It is now time for a radical review of this policy with the view of reforming services on the basis of serious analysis of the needs of people with intellectual disabilities and autism, including a realistic assessment of the number of specialist beds that are required to meet their needs safely and effectively.
In an another article, titled, Disabled people need more help to live, not to die, Jane Campbell) of member of House of Lords, calls for: “I want a world in which disabled people are valued and compassionately supported until the day they die. But I don't see us investing in this choice currently.”
The most recent Government of India program (November 10, 2021) “Government functionaries to be sensitized on disability issues” is very important initiative with great potential to change the quality of life of persons living with disability and their families. as part of the program, government functionaries, from ASHA and Anganwadi workers at the grassroots level to senior officers and Members of Parliament at the national level, would soon be trained and sensitized regarding Central sector schemes and facilities for PwDs Ministry to release five training modules for different categories of government officials. The Rehabilitation Council of India would be the nodal agency to coordinate the training sessions for government departments, schools, colleges, health and allied professionals, ASHA workers, and Anganwadi workers through a network of 700 training colleges, a senior official said. The respective training modules would be shared with the stakeholders, who would also get financial support and the services of a resource person, the official said. The training modules were drafted in simple language and would soon be translated into seven regional languages. For senior government officers, there would be half-day sessions, while school and college principals and health workers would have day-long sessions. The training for Anganwadi and ASHA workers would be for 2 days, the official said. The official said the first-of-its-kind initiative was aimed at sensitizing all government functionaries to the various Acts and schemes for PwDs, including the Rights of PwDs Act, 2016, the Accessible India Campaign, and the Unique Disability ID for PwD.
This program on implementation could be the game-changer for PwDs.
These observations bring a sense of urgency to the need to develop comprehensive, coordinated, continuous, and compassionate care programs for persons with DD and their families. A good way to develop this rather ambitious program is to take it up in specific centers like “Tricity” of Chandigarh, Panchkula and Mohali, Pondicherry, Goa etc., so that the nitty-gritty aspects can be fully worked out, prior to rolling it out for the whole country. I hope this will become a reality in the coming decade. Such a development would be a fitting tribute to Prof. B. S. Chavan, a pioneer in this field of service to persons with DD and their caregivers. The future is thus full of both challenges and opportunities to “make a difference.”
My sincere thanks to Late Professor BS Chavan, Chandigarh, Prof. Priti Arun, HOD, Dr. Wasim Ahmad, and the staff of GRIID and the Department of Psychiatry, Government Medical College and Hospital, Chandigarh, for these ideas which were initially discussed in 2018.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
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Rehabilitation Council of India, Government of India. Ministry of Social Justice and Empowerment, Government of India. New Delhi; 1992.
Rights of Persons with Disabilities Act, 2016. Ministry of Social Justice and Empowerment, Government of India. New Delhi; 2016.
World Hunger Index. Concern Worldwide, Bonn, October, 2021.
Srinivasa Murthy R. Mental retardation-scope for prevention (nutrition). Indian J Ment Retard 1974;7:49-57.
Sinclair S. (ED) National Planning for the Mentally Handicapped, DGHS, New Delhi, WHO, New Delhi and AIIMS, New Delhi; 1979.
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WHO(2003) Mental health policy and service guidance package: Planning and budgeting to deliver services for mental health. World Health Organisation. Geneva, 2003
Taylor JL. Transforming care for people with intellectual disabilities and autism in England. Lancet Psychiatry 2021;8:942-4.
Campbell J. Disabled People Need More Help to Live, Not to Die. The Guardian, October 22, 2021.
Nath D. Government Functionaries to Be Sensitised on Disability Issues. The Hindu, November 08, 2021.
[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3]