Background

Definition of Disability
A Person with Disability has been defined as one with restrictions or lack of ability to perform an activity in the manner or within the range considered normal for a human being. It excludes illness, injury of recent origin resulting into temporary loss of ability to see, hear, speak or move. However, disability has been defined variously by different groups and bodies.

While there is no universally agreed definition of disability, in India, the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 defines disability as one or more of the following: blindness, low vision, leprosy cured, hearing impairment, loco motor disability, mental retardation and mental illness. It further says that to be considered disabled, a person must suffer from not less than 40 per cent of any disability, as certified by a medical authority.

The extent of the problem
Information on the number of people living with disability (PWD) is available from the Census 2001 and the sample survey of the National sample survey organization (NSSO) July-Dec. 2002. However, in view of the different definitions and methodology used by the two and the complexity and sensitivity in eliciting this information from people in large scale surveys, accurate numbers are not known. According to government data, In India, approximately 21 million population is disabled; approximate 3% of the population. This information, however, is disputed by disability organizations.

This is further made complicated by the international data on disabilities where it is estimated that approximately 10% of the world’s population suffers from some or the other type of disability and that nearly 85% of the world’s children with disabilities under the age of 15 years live in developing countries.

Types of disability
Estimates on the kind of disability also vary widely between the two sources of information in India. While the estimates of Census 2001, suggest that nearly half of all disability is on account of Visual disability (49%), NSSO data gives this share to the loco motor disability. This is on account of the varying definition of disability used in the two surveys and the general difficulty in assessing these numbers in large surveys. Thus, there is no accurate data on the extent of disability in India. This is perhaps the first sign of neglect of the topic.

Women and children the disadvantaged amongst the disabled
Even within the disabled population, women and children are the disadvantaged group. Disability manifests itself first in early childhood and many a times it is preventable or its intensity can be reduced if efforts are instituted early on. Age specific distribution of disability provides information on the extent of disability in children. As per the estimates, with inputs from Indian Census records, United Nation’s (UN) country specific age wise statistics database and the United Nation’s Development Program’s (UNDP) rate of disability calculations prevalence rate, 16.7% of children in India suffer from disabilities.

Developmental disability in children
Signs of delay in the normal development of children are perhaps the first signs of impending disability. In 1991, the NSSO sample survey found that 29 of 1000 children in rural India had developmental delay which are usually associated with mental illness and another 3% of children had developmental delay due to mental retardation; taking the total number of children with any developmental delay to approximate 6%. In their study on 149 children below 12 years with disability in a few cities of Gujarat, Pathak, Doshi & Szymanski, found that 32.9% children have cerebral palsy, 20.8% have mental retardation, 14.8% have autism 14.1% have idiosyncratic developmental delay, 4.7% have cerebral palsy with mental retardation and 2.0% have other non specific disabilities. Cerebral palsy remains the first identified problem where 91.8% children are identified by the age of 30 months. Autism remains the least identified disability where 90.5% children are identified only by the age of 4 years.

Health seeking behavior of parents of a child with disability
The research study also provided a glimpse of the health service seeking behavior of the parents of these children. There was lack of awareness among parents on the signs of developmental delay; consequently only 50% of the children with disability could be recognized by their parents to have some developmental problem in the first year of life. This was directly related to the type of disability the child had: children with physical disabilities were noticed first and those with psycho-social problems like autism, later. Further, only 40% of children out of these were provided a confirmed diagnosis by a medical or rehabilitation professional within the first year of life. The mean gap between the age of noticing the symptoms for the first time and seeking confirmed diagnosis was 13.0 months: Families preferred to wait for an average of 13 months before seeking appropriate help. The statistics revealed in the study suggest that the delay in noticing the symptoms for the first time and finally admitting the child for early intervention service or not seeking mainstream schooling is not entirely a result of parental neglect or apathy. In most case, interactions with parents reveal that they are not informed or guided appropriately by professionals. One of the most common comments heard during interactions with professionals is; “What can you do with such a young child?”

The study further observed that only 74.9% children in the sample avail early intervention services in some form; 41.3% children begin the early intervention services before 1 year, followed by 20.2% between 1 to 2 years, 12.1% between 2 to 3 years and 1.3% between 3 to 4 years. Out of all children availing early intervention services, an overwhelming 90.6% go for physiotherapy, 70.5% for cognitive inputs and 69.1% for language inputs. Counseling is availed by only 43% families. The mean gap between confirmed diagnosis by a professional and early intervention service provision was 16.3 months. Consequently, parents wait for 29.3 months between noticing the symptoms for the first time and admitting a child for early intervention services. Back

Need assessment

Multiple factors are responsible for the poor redress of the children with disability. Providing services early on in their life is a vast challenge. This requires action at many levels since the problem occurs at several levels. Setu has identified five major causes of the problem in providing the Early Intervention services to the children “At risk” or with disability in Ahmedabad. These problems of poor awareness amongst parents, community members, health care providers, poor provision of early intervention services, lack of comprehensive services that cater all kind of disability, dearth of human resource to work in this area and lastly poor interest shown by stakeholders weaken the effort to provide proper EI care to children with disability. Moreover, the action is required at three levels to ensure that the child responds to the EI care- at the level of the parents (and the family), health care providers and educators, and finally at the level of the government functionaries. All of the causes are critical and Setu has been trying to address these through its action over time.

Lack of awareness on developmental disability among children and availability of support

Lack of education in families, lack of information in the medical community and insufficient human resources have resulted in poor awareness about disabilities and available alternatives to train children.  Parents need to be shown living examples of what their children can do and who they may become after a certain years of intervention to motivate them to send the children for developmental and educational services; mere information about benefits of working with the children is not sufficient motivation for them. The situation is exacerbated due to lack of awareness and interest on the part of the government machinery Moreover, out of the six other centres/ organizations in Ahmedabad which have started provision of EI services following Setu’s work, all except two cater to middle to higher income groups spread all over Ahmedabad.

Service provision

Too few service providers: In Ahmedabad, there are merely six organizations apart from Setu offering services to children with disability; not enough to address needs of all children at risk, both from high income as well as low income population pockets.

Moreover, all-round developmental and educational activities need to be offered in the neighborhood as transportation costs keep the services out of reach for a large number of families. More importantly, the range of services is not extended to “screening or assessment” of newborns and infants in medical establishments where young children usually go for health related services; this denies the chance to identify these children early on in their lives.

Total development and inclusion

In order to take advantage of the accelerated growth period in early childhood, “comprehensive programs” need to be offered. These programs need to include all-round developmental stimulation, assistance to procure orthotic and prosthetic devices and other benefits, provision of educational opportunities and other rehabilitation services, if the intervention provided has to have any long-term impact. Additionally, keeping in mind the provisions of the PWD Act (1995), a sustained effort needs to be made to provide mainstreaming and inclusion opportunities to these children, failing which; their residual capacities will not be utilized.

Most organizations offering early intervention services in Ahmedabad focus on physical development at the cost of all other areas of development. This does not allow them to exploit the windows of opportunities children have before five years of age. Even those which promise all-round intervention merely provide token services due to lack of understanding on how children develop and trained human resource shortages.

Training and capacity building

Attitudinal change is the most important aspect of a successful program. At present, due to lack of training and information, most stakeholders: families, educators, medical professionals, local organizations and government officials shy away from initiating programs for this group of children. To remove the barrier of ignorance in these players, sustained training and capacity building activities need to be carried out.

Lack of interest from stakeholders

Children with disability are on no one’s radar at the moment, especially where disability services are concerned. To highlight the issues being faced by these, intensive advocacy measures need to be implemented. These measures will also help in creating stakeholders’ interest in initiating new programs and sustaining ongoing ones.

As a result, the human tragedy implied by the statistics available on disability is intensified when one realizes that the potential to lead productive lives is ignored and thereby destroyed because of various gaps existing in the current environment.  Back

Philosophy and Logo

Setu in most India languages means 'a bridge'. We wish to be the bridge to help the family and the child to cross over from a state of despair and darkness to a state of 'known' acceptance and hope.

Keeping with the philosophy of the organization, our logo represents the mother and her child walking together towards a common goal. We are represented by the small support they are standing on.

Like a bridge, we wish to remain there for the family and the child but at the same time, would like to encourage the family to feel responsible for the child and have faith in their ability to help the child overcome her limitations. With this in mind, we have made it mandatory for the mothers to attend the centre daily with the children. If the mother is unable to, then someone from the family has to attend. They help the child along with the therapists at the centre to learn new skills. They also learn to look for abilities and not disabilities.This exposure to therapeutic intervention helps the mothers to work with the children at home. Back

Values

• Equal rights:  Setu believes individuals with disabilities have equal rights to opportunities to a better life and education, to experience joys, sorrows, pains and pleasures like any one else and to a better quality of supportive rehabilitation services.
• Empowerment of parents:  Setu believes that the parents must be empowered to take not only the responsibility for their child's development, but also for making informed decisions about her future.
• Value addition:  Setu believes that one must question the benefit(s) of services offered and be aware of the fact that as a public institution, every rupee we charge/ spend is hard earned. This calls for an outcome or result-orientation, rather than just effort-orientation.
• Passion: At Setu, this is the most critical ingredient. Without passion for the task ahead, one will make do with average performance: from self as well as the children and their families.
• Accountability & transparency: Setu believes that transparent dealings with all our clients and actions and decisions that can be accounted for are our critical foundations as we are "trustees" of the taxpayer's resources, and our actions must be open to scrutiny and questioning. Back

Vision

A future where, institutes for special needs education as a way to segregate children with disabilities are made obsolete.

Mission

To work towards bringing about positive changes in lives of people with disabilities by providing innovative, high quality services which fill existing gaps in the field of disability development Back

Goal

Setu is dedicated to the idea that all children are equal and that they deserve the opportunity to learn and experience success regardless of their limitations. Our goal is to nurture the child's normal desire for independence and high sense of self through assisting and facilitating development of skills, concepts, a sense of responsibility and discipline. Setu further promotes achievement of independence in daily life skills with the view that this manifests itself in the form of better relationship between the child and the care takers. Additionally, Setu seeks to establish a positive link between the child's learning success and parents' participation in her care and education. Back