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MINAL DOSHI

India,

Minal Doshi is reversing the tragic national practice of neglecting children's disability to the point when it is too late for optimizing treatment and rehabilitation. She is opening new opportunities for disabled children and their families through multidimensional education on early diagnosis, prevention, and rehabilitation. Minal is addressing her pattern-changing education to all related professional groups and to high-risk families and caregivers.

This profile below was prepared when Minal Doshi was elected to the Ashoka Fellowship in 2003.

INTRODUCTION

Minal Doshi is reversing the tragic national practice of neglecting children's disability to the point when it is too late for optimizing treatment and rehabilitation. She is opening new opportunities for disabled children and their families through multidimensional education on early diagnosis, prevention, and rehabilitation. Minal is addressing her pattern-changing education to all related professional groups and to high-risk families and caregivers.




THE NEW IDEA

Minal is effecting a dramatic shift in the way professionals, family, and the larger community approach the development needs of disabled children. She is replacing the traditional rehabilitation approach that typically begins after a child has outgrown the stage of maximum readiness to learn with a preventive approach focused on young children (infancy to 5-years-old) and aimed at optimizing every bit of potential that a disabled child has to attain a near-normal condition.

She is working with parents, medical professionals, the government, and various institutions like hospitals and schools to ensure that disabled children are not consigned to a lifetime of merely "coping," but are enabled to maximize their potential through a combination of early detection, prevention, and potential-optimizing therapy. In the process, she is taking the first steps toward both stemming the country's huge waste of human resources represented by the underutilization of disabled persons and reducing the financial burden on society by significantly reducing the number of children who may require exhaustive rehabilitative and supportive services throughout their lives.




THE PROBLEM

According to the National Sample Survey Organization Report of 1991, approximately 5.8 percent of the Indian population suffer from some form of disability. The human tragedy implied by this statistic is intensified when one realizes that many in this population have actually had their potential to lead productive lives ignored and thereby destroyed because of the country's approach to disability.

As a country, India tends to wait until a child is clearly detected as "handicapped" before it provide services, instead of taking a medical or educational approach of trying to diagnose early and thus remedy the problem. This preference for a "wait and watch and then correct" approach typically results in children coming into a rehabilitation program after they have outgrown the stage of maximum readiness and effectiveness.

Most healthcare professionals dealing with babies are aware only of the medical issues and not the developmental aspects of children under their care. Hence, they are unaware of different developmental disabilities. This and a general societal tendency to wait for miracles prevent the medical community from stressing the need to address the problem at the earliest. Poor medical practices lead to poor–and at times late–diagnosis, resulting in poor management of the problem. A handful of pediatricians in India employ screening methods to see whether the newborn will be healthy at the time of birth. Very few use the newborn-screening devices to assess infants. The exorbitant cost of prenatal checkups that could identify developmental disorders makes it difficult for most couples to go for them even if they are aware of their importance.

Also, a considerable number of medical and rehabilitation professionals have a rigid mindset about children with disabilities because of their poor awareness and the general scenario in the field of disability. According to them, no amount of training or effort on the part of parents or institutes will improve these children's chances. This bias affects the support and options they extend to parents.

Because of the apparent "non-returns" on the investments they make on their disabled children, most parents are unwilling to spend anything more than a minimum amount toward care and training of the child. Low expectations lead to poor quality of services as well as lack of accountability on the part of institutes providing services these children. Most parents have no information on how a child develops.

Most of the teacher training courses in the field of rehabilitation address a specific disability rather than the overall field. Out of approximately 90 institutes registered by the Rehabilitation Council of India to offer training, only one offers a course on early intervention. Almost all other courses deal with managing children above age 5. This absence of available training programs results in most special educators and rehabilitation professionals being ill equipped to deal with young children.

Regular teacher training does not cover developmental disorders. Teachers getting a degree have no information on how to recognize a child with a developmental disorder, or even if they do, they do not know what steps to take to manage the situation.

Mainstream schools in India have been reluctant to admit children with disabilities mainly because of a lack of trained staff and infrastructure, the cost of training, and the high number of children per class. In the few schools that do, it is usually a token gesture, as they segregate the "normal" and "disabled" populations, allowing the two to interact for a limited number of activities only.

Though India boasts of its good programs on maternal and child healthcare, there is no coordination of services related to prevention and detection and management of childhood developmental disorders. The ICDS (Integrated Child Development Scheme) emphasizes prevention of nutritional deficiencies–apart from basic education–does not address the developmental needs of children.




THE STRATEGY

Minal has set up SETU ("bridge"), an organization dedicated to young children with cerebral palsy, mental retardation, learning disabilities, autism, attention deficit disorder, and hearing and visual impairments.

Minal's first strategy is to optimize utilization of available resources, both personnel and material, to cater to all therapeutic requirements of a single child under one roof. For example, a child with cerebral palsy undergoes an integrated program of physiotherapy, speech therapy, and behavior therapy for the socialization process. Minal is thus making the entire spectrum of necessary therapeutic inputs available to that child. Her strategy is to ensure that each of her specialist practitioners (physiotherapist, speech therapist, and others) meet each child's needs.

It is mandatory that a parent accompany a child coming to SETU. Parents come five days a week and work with the children under the guidance of the therapists. Minal ensures that SETU becomes the bridge between the parents and the children, enabling the parents, especially the mothers, to take care of their children's therapeutic needs. They are empowered to be active partners in a process that has as its goal their child's well-being along with greater acceptance, ownership, participation, and responsibility on the parents' part.

Another strategy behind involving the parent so closely is to enable the child to integrate with the larger environment at home and the community. Outstation parents accompanying their children to SETU are provided with three months of training and then a home plan that is closely monitored and development milestones recorded. Minal has established parent groups to put forth suggestions and alternatives for a better future for children with developmental disorders. There is already one "e-group" on Yahoo! for parents and professionals interested in disabilities. Another chat group on Yahoo! Messenger functions as a support group for parents of children with disabilities.

Minal's second strategy is to encourage all government and private hospitals to make prenatal and developmental screening of newborns mandatory and have the infrastructure and facility to provide developmental intervention to newborns diagnosed as "high-risk" (i.e., likely to be susceptible to disability) in the hospital itself. Discussions are underway with pediatricians based in Ahmedabad to encourage developmental screening of all high-risk babies admitted in their hospitals. As a result doctors have started to use SETU services, and since August 2002, the SETU team has assessed six newborns in the Neonatal Intensive Care Unit (NICU) and at their residence. At present, the focus is on private clinics but will widen to include general hospitals.

In the near future, information about various neonatal assessment tools and their importance will be made available to parents, either in a booklet form or as part of the counselors' sessions in the hospitals. As part of their Managing Social Project, Nirma Institute of Management students placed at SETU for their fieldwork prepared a booklet on newborn screening for parents. This, too, will be distributed to maternity and pediatric hospitals to enable parents to conduct a "self check" and seek help if needed. SETU will soon publish simple handbooks on disorders and home management, making them available to parents.

Minal has also prepared pamphlets in English and local languages on typical developmental milestones of children between three-months and three-years-of-age. These have been distributed to more than 40 pediatricians for their waiting rooms and reception areas.
Information dissemination is another important strategy. Sessions with doctors and rehabilitation professionals on building awareness about developmental intervention are a part of SETU's ongoing activity. Minal also uses posters in the local language and English describing the success stories of 13 children with developmental disorders. A SETU Web site, articles in newspapers, television shows to discuss early developmental interventions, and a quarterly newsletter are some of the tools Minal uses to spread awareness and information.

Minal's other strategy is to work with schools to mainstream children with disabilities in regular classrooms. Of the 89 children who joined the therapeutic services in the last 30 months, SETU has successfully placed a total of 44 in regular schools. At a 49.43 percent rate, Minal has proved through sheer numbers that her strategy works.

Training is an important component of all of Minal's strategies. Minal will be coordinating with the Department of Human Development and Family Studies to offer courses on infant assessment to medical, educational, and rehabilitation professionals. This will start in Ahmedabad and depending on the response of the targeted group, other cities in Gujarat and the country will follow.

Minal's final strategy to move things at the policy level so that her approach becomes institutionalized is to urge government and other agencies to release funds for various activities planned for prevention, detection, and intervention to address developmental disorders in young children. Government programs like the Integrated Child Development initiative (ICDS) offer additional avenues of intervention.

Minal also plans to take advantage of the Gujarat government directive making it mandatory for government schools to have an integrated classroom under the integrated education scheme. Minal will approach the ministries of social justice and empowerment and education both to allow SETU to place students from their teacher training course in these classrooms and to provide necessary developmental interventions to the children attending the integrated class.

Having set up SETU, Minal now wants to start "neighborhood developmental intervention centers" in cities and towns so that affected children do not need to come all the way to SETU. She also plans to spread her idea by helping existing centers update and introduce new services. Minal has already done this successfully with Antarnad, a mental health organization, and another institute in Bhavnagar to upgrade existing services offered to clients. As a result of her work with schools to create "general stimulation" in the classroom, five schools in Ahmedabad already offer this facility to children with special needs, and Minal is coordinating with them to convince other schools, especially vernacular medium ones, to offer this facility to children. At present, Minal is catering to children from all over Gujarat. There are also families from the United States, Canada, and Kenya who come to India for a 3-to-12-month period to enable their children to benefit from SETU's interventions. Plans are in the works to set up franchises in other parts of Gujarat with SETU in a consulting role.

Minal believes that financial independence is important. The developmental interventions offered are paid services, which helps to underwrite SETU operations. However, to cater to children from lower socioeconomic strata, SETU has sponsorship schemes whereby individuals can sponsor a child for the specified period. At present, two children are being sponsored. Minal also is trying to enlist celebrities in championing the cause of developmental intervention at the national and international levels.

SETU has become a member of the National Trust, making it eligible for government funds. Minal is in touch with the Gates Foundation under the project of Women and Child Health to help set up information booths in hospitals. She has placed donation boxes at restaurants to spread awareness and raise funds. Minal is also in touch with UNICEF and WHO to raise funds to publish booklets and literature to spread awareness.




THE PERSON

As the second girl child in the family, Minal's birth was met with tears. However, her father, a renowned doctor, was a role model. From childhood, she was rebellious and did things her way. Feeling stifled in her home environment, she enrolled in school away from home. During her college years, she decided to work in child development. During a period of postgraduate work, Minal witnessed the disintegration of a friend's marriage due to the stress on the relationship caused by the birth of a baby with Down's syndrome. Minal was upset and her inability to do anything for her friends started to haunt her. The experience led her to think about setting up a school for children with mental retardation. While her postgraduate years had given her enough theoretical inputs, she now needed on-the-job training.

She joined Anandalaya, a school run by the National Dairy Development Board, in order to work with children and get administrative experience. She worked there for three years and set up the home science department, teaching food and nutrition, sewing and weaving, home management, and child development to students in classes 11 and 12. However, there were not many takers for this optional subject, and from the second year she started questioning her right to earn a salary that was incommensurate with her workload. Later, she joined the Eklavya Education Foundation and helped set up a school and its curriculum, classroom design, furniture, and learning aids for the junior school. When the school started, she was in charge of class three.

After two years at Eklavya, she left to pursue a diploma in special education with a specialization in mental retardation at Thakur Hariprasad Institute in Hyderabad. By the end of her coursework, her experience and discussions with leaders in the field led her to conceptualize SETU Developmental Intervention Center. By June 2000, SETU started functioning in Ahmedabad, Gujarat.




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