Free to fly!

Amrit Foundation of India promotes the development and well-being of all Indians so that they may individually and collectively reach their full potential. Their 'Patang Project' is a survey reflecting the needs and difficulties of children with intellectual and developmental challenges. Dr. Suneeta Singh Sethi, Founding Board Member, Amrit Foundation shares her thoughts on the lives and challenges of the families of children with special needs.

1. What is the significance of the name Patang? And can you tell us more about what you aim to achieve through this study?

We chose the name Patang for its symbolism. The Patang flies high in the sky, unfettered, free to roam and to be itself. That is what we wish for all children. Unfortunately, that is not the case for children with intellectual and developmental disabilities.

The Patang Project is an effort to shed light on the situation of Children with intellectual and developmental Challenges (CwCs) in Delhi. An effort has been made to document these factors and gather empirical evidence to understand what needs to be changed – and how – to ensure better services for children with challenges.

Patang epitomises the courage with which these children approach their life and aspire to a better future, to fly as a kite in the sky.

2. What are some preconceived notions about people with developmental challenges that the Patang Survey is trying to dispel?

There are several misconceptions about why people have challenges, who they are at the core, what they can or can’t do, what they can aspire to or not, and worst of all, that they somehow have no personal identity.

This is all that is being sought for CwC. Some way of dealing with the special needs that they have – be it difficulties in social skills, in locomotion or in abstract thinking.

There have been some outstanding films that have discussed some of these issues. Taare Zameen Pe was a game changer. Suddenly, people realised that this was not some other people’s problem, it was ours, it was everyman’s issue. There have been others such as Koi Mil Gaya, Barfi and My Name is Khan.  The outstanding Margarita with a Straw makes it clear that persons with challenges have the same life cycle as everyone else, and that blossoming sexual desire is the same on the Island of Different.

3. In your opinion, what are the biggest hurdles to cross with regards to specialized care for people with developmental challenges? And what would be the first steps to overcome them?

The first and most important issue is the sheer unavailability of affordable services in the areas where CwCs most need them. The Patang Project finds that almost all (99%) caregivers use their own household income as the primary source of funds to pay for the assistance that their child needs. Very few have access to any other funds. The high cost of services and transportation further act as major barriers to utilisation.

Over half of all CwCs have never seen a psychiatrist or psychologist. Diagnosis by a psychiatrist or psychologist is generally the first step to recognition of the problem and taking definitive treatment. Only 41% of caregivers reported that they received information about other services from their professional provider.

There is high, unfulfilled demand for services. Most of the CwCs (i.e. mode from our sample) use only 1.4 services. But many would like to use another 2 – 3 services but just can’t afford them. The situation of CwCs belonging to the poorest section of society and of those with especially severe challenges is the worst.

To overcome barriers to services it is essential to improve the state of main service provider – the government (75%). Unfortunately, this service is seen by caregivers to lack quality.

4. The survey aims to understand the interplay between social factors as they relate to the utilization of specialized services, can you talk a little bit about these factors and why they are so important in this context?

Living with challenges puts both CwCs and caregivers at a disadvantage in a world not willing and not organised to be inclusive.

CwCs experience bullying and direct discrimination in interpersonal settings. Hostile circumstances create an adverse environment that they have to negotiate every day of their life. It is not surprising that CwCs are not comfortable outside the shelter of their own homes.

Caregivers are isolated and have to rely on their own psychological and material reserves. Social factors such as fear of being judged, refusal of services, opposition from family members, rampant discrimination during school admissions etc., result in their using ‘protective’ strategies to cope. Because of their anxiety and the discrimination that they face, they deny and conceal the difficulties that their child experiences.

Caregivers struggle to provide CwCs with the care that they need. They have to look for information and resources and leap barriers and work crises. The most common barriers are distance to a service facility, transportation and cost of the service itself.

5. To what extent does the family’s income level play a role in the access to and utilization of specialized services?

The Patang Project captures data from some of the poorest in Delhi. We looked at the differences between the poorest and the wealthiest among this group. What came out is an undeniable link between poverty, access to services and outcomes in terms of productivity and inclusion. Even when poverty does not directly contribute to poor health, it can compound the effects of other negative social determinants. Those with the least income have the hardest time. 

Stigma and discrimination against CwC is real and has clear consequences. One in three caregivers reports a CwC-linked job change and several reported having to switch to part-time work. All caregivers are almost equally likely to experience work crises. Clearly there is a society wide discrimination against CwCs.

6. Have you come across anything interesting about the way people with developmental challenges and their caregivers navigate their obstacles?

Every caregiver’s journey begins when they notice something unusual about their child’s development. The process of seeking a diagnosis even in a well-resourced city like Delhi is difficult, and has consequences for the emotional health of the entire family

As time goes on, caregivers become more accepting of their child’s condition; but it often means resigning themselves to a situation in which their child is stigmatised. Hope is sometimes linked to education – many caregivers believe that if their child gets into a school, s/he will somehow become more acceptable and tractable. High on every caregiver’s list is employability or the ability to earn a livelihood by some means. So vocational training is highly valued.

Acceptance is very important to humans. Caregivers of CwCs want their children to be accepted, but this means that society would have to be open and inclusive. In an open and inclusive society, CwCs would have the chance to make friends, to maybe run errands for their family safely in public spaces, and be hired into an organisation that makes them feel welcome and makes the most of their skills.

7. Are there any interesting, local case studies we can learn from?

A welcome but fledgling step is the institution of the Rashtriya Bal Swasthya Karyakram or RBSK. This is the first government program that addresses developmental delays from a health perspective.

Many more schools are taking in students with challenges. The Sarva Siksha Abhiyan has opened that door in government schools – although there are concerns about whether they are equipped for the kind of personalised attention and have the skills set to provide it. But private schools in Delhi such as the Srijan School and Vasant Valley School, and colleges such as IILM, Amity and IIFT have embraced diversity.

Swayamkrushi is a voluntary organisation established in 1991 which is run by Ms. Manjula Kalyan. By following a dual system of rehabilitation -both socio-cultural and economic- Swayamkrushi promotes all round development, self-confidence and empowerment. Young adults live in groups of 8 in Group Homes and go to work as possible in sheltered workshops or the mainstream. Truly an outstanding example.

8. What do you think the key reasons for shortage of trained professionals are? And how can we overcome them?

An initial problem is the simple lack of information. We don't know the actual extent of the problem. The difference between Indian figures of disability prevalence – 2% – and the world’s – 15% – is stark. It is indicative of the lack of readiness to tackle the problem. When we are not ready to accept the size of the problem, we don't have the information we need to respond – we don't have the will to put in place the programs to identify, diagnose, treat, support, create recreational facilities for, train and employ those with challenges.

The World Report on Disability 2011 notes that ‘physicians worldwide generally lack training about caring for people with disabilities, thus frequently compromising their health care experiences and health outcomes’. MCI had in 2013 decided to include Physical Medicine and Rehabilitation (PMR) as a mandatory subject in the existing MBBS curriculum; this change is yet to be notified by the health ministry. Special educators, schools, training institutes, vocational training institutes, inclusive workplaces – all are in short supply.

At Amrit, we believe that young people have the same aspirations and needs. So we support a program of skills development, which leads to job placements in corporates that receive our sensitisation training.

From this year, we are going to introduce the Amrit Scholarships to support scholars pursuing Master’s level research in intellectual and developmental challenges.

(as responded by Dr. Suneeta Singh Sethi, Founding Board Member, Amrit Foundation of India; Find out more about the PATANG PROJECT here – http://amritfoundationofindia.in/)