Abstract
In resource poor settings innovative and bottom-up approaches are required to provide services to people with with disabilities. In this context, the present paper explains a community-based model of manpower development and coordination of services for people with intellectual disabilities in unified state of Andhra Pradesh in India. Women with disabilities from the village were identified, and those willing to be trained to work as community resource persons (CRPs) were selected and given hands-on training in a phased manner. A total of 130 women were trained in five groups of 25–30 per group and were deployed in the community to screen, identify and refer children with intellectual disabilities. The training content included basic stimulation and interface with functionaries of other government departments of health, education and welfare to ensure comprehensive service delivery. Neighbourhood centres (NHCs) were established where the CRPs could meet with families collectively. The results indicated that the CRPs were welcomed by the families. The NHCs established primarily as recreation centres, promoted inclusion and functioned as information dissemination centre. The services provided by the CRPs were owned and monitored by the Women’s self-help group and the disability groups thus ensuring sustainability of the model.
Keywords
Sustainability of any programme depends on the ownership of the programme by the stake holders. To ensure such ownership, it is essential to involve the community from the inception of the programme, in a systematic manner, keeping in mind the existing legal status, socio-economic and cultural implications. It is established with evidence that culturally appropriate community participation in rehabilitation programmes is successful in many societies by adapting the strategies to suit the cultural context (Rehman, 1999). Sustainability refers to the ability of the system to perpetuate itself using locally appropriate strategies, so that the system continues till its goals are achieved (Thomas and Thomas, 1999). The number of publications on community involvement in the support and rehabilitation of persons with disabilities has increased in recent years, though most of them are experiential accounts. As rightly noted by Thomas and Thomas (1996), the need for increase in coverage in services has taken precedence over the quality. Twenty years have passed since this publication, but there is not much change in the situation. Top down approaches which are mostly prevalent fail to see the merits in the local resources and the inbuilt traditional methods in support of persons with disabilities. Although some practices may be adversely affecting the person with intellectual disability and be prohibited (such as burning the skin on the forehead as a cure for epilepsy), there are some indigenous practices (such as a ‘swinging crib’ suspended from tree branches to place the child for a nap – now a practice for sensory integration therapy) that can be encouraged and strengthened. In other words, a bottom-up approach with the streamlined practices picked up from the community leads to better acceptability and sustainability within the community. This is expected to result in including persons with intellectual disability in the mainstream community rather than creating special environments for them.
In India, rehabilitation programmes are mostly supported by governments through various schemes that the central and the state governments bring out from time to time. Some of the programmes are supported by the external funding agencies such as World bank, Action Aid, Save the Children and UN agencies, nongovernmental organizations, parent groups and corporate agencies under their mandated programmes of Corporate Social Responsibility.
Setting
Andhra Pradesh was one of the largest states with 23 districts in the south central part of India. Each district was further divided into ‘Mandals’. A Mandal is a smaller unit in a district with about 50,000 populations in 25–35 villages. A district can have anywhere between 35 and 65 Mandals depending on the size of the district with about 9000–10,000 households in each Mandal. The state of Andhra Pradesh had a total of 1099 Mandals with a population of 8.46 crores (84.6 million) people as per census of India (2011) and, Government of India (2011) with 22.67 lakhs (2.27millions; 2.68%) persons with disabilities. Among them 132,380 (0.16%) were persons with intellectual and developmental disabilities. In the selected 100 project Mandals, the number of person with intellectual disabilities was 11,364. In 2014, Andhra Pradesh was divided into two states, namely, Telangana and Andhra Pradesh. This report is about the programme before 2014, when Andhra Pradesh was a unified single state. The data was collected as the project was being implemented prospectively and is being reported here.
Indira Kranthi Patham (IKP), a project of the government of Andhra Pradesh had the main objective to enable rural poor people to improve their livelihood and quality of lives through their own organizations. The project was implemented by SERP, an autonomous body in the Department of Rural Development of the Government of Andhra Pradesh. Among the many focus areas such as health and nutrition, literacy, hygiene and sanitation, irrigation, organic farming and so on, disability rehabilitation was one of the important programmes of SERP. This project was implemented by the District Rural Development Agency at the district level. The various programmes implemented by the Department of Women and Child Development, the Department of Health and the Department of Education and Disability Welfare by the central and the state government are informed made aware among the rural population by SERP, so that people reach out and get their entitlements. This also served as a platform to voice their views, thus encouraging self-advocacy.
One major aim of SERP was to form SHGs among the villagers. In recent years, SHGs have received recognition in the developing nations as a system in order to help socially disadvantaged groups to address their problems and find solutions be sharing responsibilities including the financial burden among themselves. In this, every member contributes from his savings to a collective fund which in turn is given as a loan on a very low interest to a needy member at a given time for any activity such as starting a business, building house and so on. In Andhra Pradesh, these SHGs are formed by women, with office bearers including President, Secretary and Treasurer and other key members elected by them from among them. Mandal Mahila Samakhya (MMS), as it is called (to mean Mandal Women’s Forum), is an active group in the village, and every developmental activity is carried out with their cooperation and commitment. This has resulted in overall development in the villages, increased awareness on the rights and entitlements of people, better facilities on health, education and employment, economic empowerment, improved expression in terms of their demands and increased self-esteem. SHGs are also formed in the villages with disabled members of society, called Mandal Vikalangula Samakhya (MVS) meaning, Mandal Disability Forum. MVS admitted both male and female members. In the case of those with disability who cannot advocate for themselves as in the case of those with severe intellectual disability or some of the developmental disabilities, the parents or guardian could be the member of MVS. The MVS is federated to MMS so that the persons with disabilities are mainstreamed.
The overall objectives of the project with regard to empowering persons with disabilities were implemented in all the Mandals of the state, which included institution building, advocacy, livelihood, community-based rehabilitation and linkages with the Department of Health, Education and Welfare. The training of community resource persons (CRPs) was implemented in selected 100 Mandals from all the districts of Andhra Pradesh as a first phase which is reported here. Each of the selected Mandals had a community coordinator for disabilities (CC-Ds) to monitor and oversee the disability related activities. The CC-D had the responsibility of helping persons with disabilities form SHG at village level and federate the group at Mandal level. This would in turn lead them to form strong linkages with the other activities of IKP giving access to programmes of health, education, nutrition and so on. The CC-D had community development workers (CDWs) at grass roots level to help facilitate the activities of persons with disabilities and their families and link to Mandal level activities. The most interesting part, which is the strength of the programme, is that the work carried out by CC-Ds and their team members was monitored by MVS. This reflects the fact that the programme is initiated and monitored by the persons with disabilities and their family members (in the case of intellectual disabilities) from within the community. The total programme is supported and monitored by district project manager at district level and project director (PD) at state level. A project manager at state level would coordinate the technical aspects of assessment, training of human resources and rehabilitation.
The need
The human development unit of World Bank (2009) as quoted by Karpur (2013) reported that in India, the status and living conditions of persons with disability are worse than the average which is due to lower educational attainment and living standards when compared to national levels and lack of access to health services. In the state of Andhra Pradesh, persons with disabilities have to deal with inadequate and poor quality services in terms of social and employment assistance, limited availability of accessible public transportation, accommodation and lack of specially designed materials and accessible schools (Karpur, 2013). With the implementation of Sarva Siksha Abhiyan (SSA, meaning education for all), a centrally sponsored scheme by the Department of Education of the Ministry of Human Resource Development and implemented by the state governments, the situation in the primary and elementary schools are changing for the better in terms of improved barrier free environments, and accessibility and, engagement of resource teachers to assist the teachers to meet the additional needs of children with special needs.
Children with intellectual and developmental disabilities have additional challenges to be addressed due to the nature of the disability. A major difference between intellectual disability and other disabilities in service delivery and empowerment is that persons with intellectual disabilities need suitable training at different stages of life as they grow older to meet their physical, social and economic demands. Persons having other sensory or motor impairments with intact intellectual abilities need to compensate for their loss through perhaps, a corrective surgery, assistive aids and/or appliances, accessibility in the environment, education and guidance to lead independent lives (Narayan and Reddy, 2008). Often, intellectual disability is evident only as the child grows older. By the time family members are convinced that the child needs help, the precious early years may be lost. The nature of the disability demands that the family members are oriented to identifying children at risk for developmental delays/disabilities, so that they are referred for support and intervention. In addition, it should be ensured that they go to school as they have a right to education (Government of India, 2009; UNCRPD, 2008) so that efforts are geared towards bringing out optimum potentials of those with intellectual/developmental disability.
Considering the specific needs of persons with intellectual/developmental disability and the existing structure within the system, a specific model was developed by the disability wing of SERP that is described here. Using a client centred, bottom-up approach, with total participation of the persons with disabilities within the community, involving the community members, the model was developed.
Aim
To identify and select women from the community who have motor disabilities, to provide them with competencies and skills to screen and identify children with intellectual/developmental disabilities or those at risk for developmental delay and to refer for assessment and further guidance for certification leading to entitlements.
To guide parents of persons with intellectual and developmental disabilities and their family members to reach the service providers with regard to health, education and welfare to meet their specific needs.
To establish neighbourhood centres (NHCs) where all members in the community including those with and without disabilities to come together and spend time in a relaxed and enjoyable manner.
The service delivery model
In India, the state and central governments have certain schemes offering benefits and concessions such as assistive devices, appliances, corrective surgery, maintenance allowance, free travel concessions for persons with disabilities. The functionaries working in the system of SERP were competent in helping the persons with disabilities receive these supports. But they were at a loss as to what to do with persons with intellectual disabilities as many of the persons with intellectual disabilities did not need any referral for surgery, medications or assistive devices. They needed training for independent living which the functionaries at SERP had no competencies to provide.
Phase I
Training of field functionaries
Realizing that the persons with intellectual disability and their families required training and that the existing aids and appliances are not of benefit to most of these children, the state PD organized a training programme for 25 CC-Ds and CDWs from different districts of Andhra Pradesh. The training included lecture-discussion and hands-on opportunities by qualified professionals to ensure understanding among the participants. The manual on intellectual disability for CBR workers (Narayan, 2007) was translated to Telugu, the regional language, and was given to the participants as resource material for self-study. After 3 months, a follow-up workshop was conducted for the same participants who reported that they are in a better position to deliver services to persons with intellectual disabilities and support the family members. They also gave feedback that there is a need to strengthen the programme by involving the local community members. Based on the outcome of this effort, the second phase of the programme was planned, aiming at involving community members.
Phase II
Training CRPs
Intensive efforts were taken to identify persons, particularly women with disabilities from the villages. Women were chosen as they less likely to move out to cities seeking employment. In addition, the mothers and family members within the villages were comfortable having women informing them in terms of training their children with intellectual disabilities in activities such as self-help skills as it was more culturally appropriate in the villages. They were informed about the purpose of the training. After detailed discussion, those who were willing and volunteered to participate were selected. It was interesting to note that many of them indicated that they volunteered to undergo the training as they felt that by doing so, they get an opportunity to prevent the children of today from going through the societal exclusion that they underwent as a children due to their disability. Such a response was anticipated by the trainers while narrowing down the selection of persons from the community and it proved to be correct. Most of them had elementary education (grade VIII) as that was one of the basic requirements for selection, while some had attended high school. Most of them had upper and/or lower limbs affected. In the case of intellectual disabilities, instead of the person affected, there were young mothers of children with intellectual disability who were included in the training programme.
Method of training
The method of training included lecture discussions, case studies, demonstrations, working hands-on with children/adults with intellectual disabilities and group discussions. It was an on campus training and the participants stayed on campus for all 5 days. Considering that all the participants had a disability, arrangements were made to see that they were comfortable and not having to commute every day. Each day’s learning in class was made into a poster presentation by participants in groups the next day that served as a recap of the previous day’s learning as well as clarifying concerns before moving to the next content. The participants were encouraged to be innovative in composing small poems in Telugu (regional language) that described the role of community, importance of nutrition for good mental health, early intervention and the rights of persons with disabilities. Between sessions, the trainers visited some of the villages to observe CRPs at work and facilitate their smooth functioning. The training was carried out by a team consisting of qualified professionals in psychiatry, early intervention, special education and community-based rehabilitation, psychologist, speech pathologist and professional social worker.
Each programme had three levels of training and each level lasted for 5 days. Between the levels, there was a gap of 3 months. The method used was ‘teach – work-teach – work. The first level included content on elements of intellectual/developmental disabilities, basic screening and referral for assessment. They were provided with a simple screening schedule prepared in Telugu language and validated for this purpose. Face validity exercise was carried out by giving the questionnaire to 12 experts in the field of disability rehabilitation and their comments were obtained. The experts were to respond on the appropriateness of each item either as ‘apporpriate’, or ‘not appropriate’. ‘Not appropriate’ had ‘delete’ or ‘modify’ as options and the experts had to suggest modification or reason for deletion. The responses were analysed, suitable suggestions incorporated and the questionnaire was finalised. After the training, the participants were expected to go back to their villages and screen the babies and young children for risk factors using the tool and refer to their medical counterpart working in the village for further referral for diagnosis and intervention. In the second level, they were to report the screening experiences they had after the first phase implementation, including the number of children screened, the strengths they felt and challenges they faced. The training content in the second phase included home management for self-help skills, management of problem behaviours and linkages to special service in the NHCs and schools. On completing this training, they would go back to the village and identify children who needed such training and help them accordingly. The last level included livelihood related input targeting the older individuals with intellectual disability and an overall comprehensive content with a focus on the family and community involvement. All the trained persons were called CRPs.
Phase III
CRPs in the field
The trained and deployed CRPs were given a certain number of villages to work in terms of children with intellectual/developmental disabilities. This included screening and referral, linkage to medical, legal services, referral to school and NHCs and activities related to livelihood. Parent support was part of the overall service delivery. The CRPs were initially paid by the SERP, later to be absorbed by the system within the village linked to MVS and/or the parent group.
A total of five groups, each group having a minimum 25 participants, from the selected 100 project Mandals from all 22 rural districts of Andhra Pradesh resulted in the training of 130 CRPs in 3 years. Although the requirement was for 100 CRPs, 30% more were included in training, thus accommodating for dropouts. Considering the nature of the work and the fact that the CRPs themselves had a disability, drop out was anticipated after starting the training programme, and a total of 130 were trained.
To function effectively within the system, the CRPs were to be linked to other service providers within the system. The CRPs were oriented to other services in the village and were interfaced with the early childhood centres called Aanganwadis in each village established by the Department of Women and Child Development, health workers of Department of Health and the inclusive education programme through SSA and referred children appropriately. SERP also had an assessment and intervention team consisting of a physiotherapist, a speech therapist and a special educator who would visit the villages periodically to assess and provide intervention to be carried out at home. The CRPs were linked to this team, so that they would ensure that the parents take the children for therapy and training.
Establishment of NHCs
In addition to preparation of CRPs, the NHCs, established by SERP within the villages served as a major link for therapies, awareness, information dissemination and leisure and recreation activities for all children. An NHC is a place designed by the functionaries of SERP by involving the local community to have all members in the community including those with and without disabilities to come together and spend time in a relaxed and enjoyable manner. Such a centre is established in buildings situated in the middle of the villages, so that all members of the community had access to it. This was a parallel programme along with the training of CRPs, so that children with intellectual/developmental disabilities had the benefit of all services within the village. CRPs are linked to NHCs, so that they can encourage the children with intellectual disabilities and their families to be participating in the activities of NHCs. They took care to facilitate recreation and leisure time activities for children with and without disability who came to the centre, by introducing them to activities such as songs, dance, drama, storytelling, art and craft. The CRPs had access to MVS and MMS, so that any issue related to individuals and families that needs to be looked into by these committees are promptly brought to their notice.
Specific activities of the NHCs are as follows: To serve as a place where persons with and without disabilities can be together. To be a recreation centre for persons with and without disabilities of all ages. To function as a place where therapeutic equipment for physiotherapy, occupational therapy and so on is available for persons with disabilities who need to use them on the advice of the therapists. To serve as a play centre where small children with developmental delays can receive stimulation activities. To function as a referral centre for medical, educational, certification and legal issues on disabilities. To be a place where minor repairs of aids and appliances/assistive devices of the persons with disabilities can be carried out. To provide respite care services to parents of young children with developmental delays/disabilities.
Evaluation of the CRPs
Each phase of the training programme had its own inbuilt evaluation systems. Each phase had a pretest and a post-test. The first session of the first phase had provision for appraising the attitude, interest and competencies of the prospective CRPs. This included written test in the form of multiple choice questions and brief open-ended questions followed by group discussions. After each training session was completed, a post-test on the content of the session was carried out. Between two training phases which was on an average a gap of 3 months, the participants would be working in the field which was monitored by the supervisors. The final session had a comprehensive test with case presentations. As the participants were expected to be skilled workers, continuous monitoring of performance throughout the training and field work was carried out taking into account, specific parameters for grading them in the varied tasks.
Results
Through the CRPs, 3671 children with delayed development were identified and mobilized for assessment and provided with required support through qualified professionals. It was observed that the CRPs played a critical role in ensuring the beneficiary was provided with follow-up services. NHCs were used by CRPs to have their meetings with beneficiaries in small groups in addition to the home visits that they carried out.
As of 2013, the achievement of NHCs with involvement of CRPs in the state included the following: One hundred and two NHCs are operational in 22 rural districts of the state. Three thousand two hundred eight-nine persons with disabilities have been enrolled in the NHCs. One hundred trained CRPs have been deployed and are providing services. Three thousand six hundred seventy-one children with developmental delay/disability have been identified and supported. Two thousand eight hundred nineteen children are being provided with early intervention support. One thousand three hundred seventy-two children with development delays have shown considerable improvement in their mile stones. Four thousand ninety-six persons with disabilities are using centre-based training. One thousand ninety-two under nourished children with intellectual/developmental disability have been identified and provided with nutritional supplements. On the advice of physician, 690 children with intellectual disabilities have been provided with medication for conditions such as epilepsy. Two thousand seven hundred thirty-six parents of intellectual disabilities have been trained on home care, management and support for their sons and daughters. Fifty-two associations of parents and care givers of persons with intellectual disabilities have been formed with the initiative of CRPs, and they meet regularly at the NHCs. The trained CRPs facilitate these meetings.
The SHGs were found to be sensitive to the needs of the families having children with intellectual/developmental disabilities and extended support to CRPs and NHCs. It is satisfying to see that the families no longer feel ashamed or hide children with intellectual disabilities as was the case in the past, but come out to demand the rights and entitlements, education and other supports for their children. The village community, by and large, was observed to be sensitive to the needs of these families and empathized as well as recognized the role of the CRPs and respected them as important members of the community. The CRPs were observed to have increased self-esteem.
Discussion
The impact of any programme in a community depends to a large extent on the human resources required to carry out the programme. Careful selection of persons with disabilities from within the community was a major contributing factor in the success of the programme. The CRPs reported that they enjoyed the importance and elevated status that they received in the village after they became CRPs as it was a matter of pride for them. They added that it was such a contrast to their status as a child having a disability earlier in their lives, when they were bullied and shunned. In some instances, it was visible that they were happier with this elevated status more than the financial gains that they had by virtue of becoming CRPs. In addition, their empathy towards the person with intellectual disability and their families was genuine because of their own disability. The emotional connections and therefore the acceptance levels between the CRP and the family were evident in many occasions.
One other reason for successful training of CRPs was that the training content was simplified and was tuned to prepare the CRPs to screen and refer for further diagnosis, follow-up with the family for meeting the therapists and simple stimulation activities to enhance the all round development of the child. The (do’s) and (don’ts) were clearly specified, so that they stay within the limits and respond appropriately to the referrals. For example, the CRPs were aware that their role was identification and referral and not making a diagnosis. Under the guidance or with the approval of the qualified trainer, they could help the parents with simple training in daily living skills, reminding and insisting on the importance of taking medicines for epilepsy and so on. As rightly noted by Thomas (1992), CBR workers are generalists whose training must be simplified to avoid over specialization. This was exactly the caution exercised in developing the content for the training. As most of them had only elementary education, considerable content transaction was through demonstrations and hands-on training. Every training programme had a field application before moving to the next level which helped in ensuring that the CRPs had learnt and applied what is learnt in their local context. It was observed that this gave them confidence in applying what they were learning as well as clarifying their concerns. It is well known that class room learning and field realities can vary, and hence, the train – work-train – work method was a good way of transferring skills to the CRPs.
Establishment of NHCs along with training of the CRPs gave a base for the community members, the individuals with intellectual disability and their families and the CRPs to interface with each other. Parent groups could be formed as they had a platform to meet and interact. Updating with the developments and trends, announcements by the governments regarding the entitlements and benefits for persons with disabilities and such information were shared within a short period. The fact that the NHC was not termed as a centre for person with disabilities but was a recreation centre for all was a smart move towards natural and spontaneous inclusion without imposing inclusion. The attitudinal barriers were broken right away by opening the doors of NHCs for all. As seen in the data above, the reach out through NHCs was remarkable.
As noted in the ILO-UNESCO-WHO (2004) approach to CBR, within community development of integrated programme is the utilization of approaches and techniques which rely on local communities as units of action and which attempt to combine outside assistance with organized self-determination and effort and which correspondingly seek to stimulate local initiative and leadership as the primary instrument of change. Such an approach is tried out in the training of CRPs and establishment of NHCs which has led to the reach out and sustainability of the programme. The services of CRPs and the NHCs are continuing in most of the Mandals after the division of the state. As both state governments are in the process of planning and implementing new programmes, there is a likelihood of changes with newer schemes. However, the trained CRPs will continue to use their knowledge, skills and competencies with the support of the village forums and the community members.
Lessons learnt
Women with disabilities with basic literacy can be trained to identify and refer children with developmental delay or at risk for intellectual disability for further assessment and diagnosis.
As the women are disabled, the training should be in a place as on-campus training to help them stay in one place. The trainer should be sensitive to signs of fatigue in them and address it suitably.
If the village has an organized body such as MVS and MMS, the programme can be sustained with the involvement of the local support.
Interfacing the trained CRPs with functionaries in other services will ensure accessing the services of health, women and child welfare, disability welfare and education for children with intellectual disabilities.
The trainers’ visit to the villages to oversee the work of CRPs is essential to understand the ground realities and adapt the training accordingly.
Establishment of NHCs as a way of sustaining the programme was well thought, as it is also a means to promote spontaneous inclusion.
Replicating and scaling up the programme will require funding initially until the CRPs are trained and absorbed by the local community.
Footnotes
Authors’ note
Sudhakara P Reddy is the former director of Disability Division, SERP, Andhra Pradesh, India.
Acknowledgements
Mr B Rajashekar, IAS., CEO, SERP for support throughout the project. The untiring efforts of the trainers of the CRPs, Dr Swapna (early intervention specialist and physiotherapist), Dr George Reddy (psychiatrist), Ms Maithreyi (special educator), Mr Janga Reddy (Project Manager, Institution Building, SERP), Dr Hari Prasad (audiologist and speech pathologist), Dr Beula Christy (rehabilitation specialist in visual impairment and additional disabilities), Dr Naveen Kumar (psychologist), Mr Joshi (programme manager, Cleft lip programme) and Mr Mallesham (computer programmer) are gratefully acknowledged. The persons with intellectual disabilities and their family members who cooperated for the hands-on training of CRPs are acknowledged and appreciated. The supports of the trained CRPs of early batches, CC-Ds and CDWs who coordinated the CRP selection and training are highly appreciated.
Authors’ contribution
Author names are given in alphabetical order as all the three authors have contributed equally.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the State Government of Andhra Pradesh and World Bank. World Bank funding was through SERP.