National Trust is part of the department of empowerment of persons with disabilities under the ministry of social justice and empowerment. It works in particular for the welfare of people with four intellectual disabilities. Purnima Sharma spoke to its joint secretary and CEO CK Khaitan on how it is trying to bring change in the lives of persons with disabilities, or PwDs.

Why does National Trust address only four intellectual disabilities?

It’s easy to take care of physical disability but impairment and development disorders require focused attention and care. So, special four disabilities were chosen by the special Act of parliament, and thus the National Trust was created. The National Trust Act, 1999, was enacted to address the four disabilities – autism, cerebral palsy, mental retardation and multiple disabilities; and to support PwD Act, 1995 as persons with these disabilities need continuous support throughout their life.

The department of empowerment of persons with disabilities (DEPwD) is going to give us a budget of '80 crore for two years.

How does the ministry define intellectual disabilities?

The intellectual disability is a generalised neurodevelopment disorder characterised by significantly impaired intellectual and adaptive functioning. It is defined by an IQ score below 70 in addition to deficit in two or more adaptive behaviours that affect everyday routine.

How much are you focusing on rural and urban areas?

We only work through NGOs which are registered with us and we call them ROs (registered organisations). We work through almost 600 NGOs/ROs. The list is available on our website. Many of them are working in rural areas, but most of them are in urban areas. As of now, the coverage in rural areas is less but I am hopeful with the new schemes the NGOs working in rural areas will also register with us and will spread scheme benefits to the differently-abled persons in rural areas.

Since you are working with 600 NGOs how do you monitor their efficiency?

We have created key performance indicators. We had a system wherein a report had to be received by the office, where it was evaluated. It then depended on the concerned officer to consider it or not. However, now we have made everything online. This will enable NGOs to generate online report based on the key performance indicators and we have given weightage to that. So, if there are five key performance indicators, 100 percent marking will be done. If the NGO is getting more than 50 percent, automatically the grant will continue. So, now at no level any clerk or officer can stop the grant if the monitoring report has been received electronically. Now the report from the NGOs will be clocked electronically, as to when the report of key performance indicator was received from the RO. We have to take a decision within 15 days.

What kind of challenges do you face and how do you resolve them?

As per the records, there are almost 85 lakh persons who have four intellectual disabilities and it is very difficult to take care of them because they are spread across the country. Earlier, schemes were not working fine because they were not able to take care of even one percent. Now with the new schemes, we will try to cover the maximum. Earlier we used to spend '4.31 crore on schemes and now we would be spending '45 crore every year.
The other challenge is to create awareness about the four disabilities in society. This can be achieved through new and revised schemes of National Trust, especially ‘Badhte Kadam’ scheme, which is made for community interaction and awareness generation.

How will these schemes address the needs of four intellectual disabilities?

All the new and revised schemes are made keeping in view the needs of the four disabilities covered under the National Trust Act. Also, these disabilities are conditions which cannot be cured, but can be contained or improved with proper training and therapy and by creating conducive environment through mass awareness and sensitisation of various stakeholders.
We made a matrix of requirement of the four disabilities. First is personal life and family support. Second is health, third is education, fourth is employment and fifth is legal guardianship, because they require special care. Sixth is community interaction and awareness, because we want to mainstream them in society. So, considering all these [six] components we try to make schemes which can cover them from birth to death. So, we have three categories, 0-10 years of age, 10-18 years of age when they attain adulthood, and after adulthood; and we have created schemes for all these.

How do you plan to address health and accommodation-related needs of the differently abled?

Health issues can be addressed mainly by the Niramaya Health Insurance Scheme which provides health coverage of '1 lakh per year per PwD. Also, the Disha scheme, which is an early intervention scheme, will address early detection of impairment, development disorder and preparing the child for school through training, therapy and counselling. Schemes like ‘Samarth’ and ‘Gharonda’ provide residential care and ‘Vikaas’ provides day care.

Accommodation of the destitute, orphans, and families in crisis can be addressed by the two residential schemes ‘Samarth’ and ‘Gharonda’, which will not only provide residential facilities to the PwDs but also provide opportunity for doing work, as per their capabilities in the specially set up ‘work centres’.

How would you address education and employment-related needs?

Education-related needs will be addressed by Disha scheme, which provides early intervention and school readiness programme. Children with disabilities and their parents will be trained for this purpose. Gyan Prabha scheme will provide opportunities to these persons to pursue educational, vocational programmes at higher level which will lead to their employment. In addition, the Vikaas scheme will help the PwDs in enhancing their skill on vocational, skill development programme and getting employment.
Development of these intellectual disabilities takes time, and it’s not fully developed, so employment becomes a big issue. But, still there are very successful examples that limited employability is possible. For example, Lemon Tree Hotel is employing autistic persons, so there is a batch of eight people who are working with the hotel located near the (Delhi) airport. And, we are trying to create a skill development scheme which will run at Samarth and Gharonda centres and also wherever possible. So, we will prepare them for a particular kind of work, so they are more confident and support themselves to some extent and their contribution to society comes to the fore.

How are you planning to sensitise society and increase awareness about the intellectual disabilities?

The Badhte Kadam scheme is for creating awareness and sensitisation among different stakeholders. We have been organising workshops in various parts of the country to sensitise the registered organisation and the state governments about the new schemes of the National Trust. In addition, we are publicising schemes and activities in all the programmes of the DEPwD.
Under Badhte Kadam, we had once a year event, Vishwas. Now, we have made it throughout-the-year event. We have also conducted road shows, workshops sensitisation of students, sensitisation of professionals like advocates, school principals, teachers, CAs, industrialists and so on. Awareness campaigns are carried out by NGOs.

One of the key objectives of the Accessible India initiative is making infrastructure and facilities disabled friendly. What role does National Trust play in this?

Accessible India is basically for removing the physical barriers whereas we are trying to remove the mental barriers. Acceptance of mentally retarded children or adults, and autistic or cerebral palsy children and adults is very low in our society. Though our society is educated, the acceptance of intellectually disabled is low. So we want to remove the mental barriers.

Is the whole process of registration and application to schemes digitised?

As a part of the Digital India programme, there is no need for an NGO to come to our office for registration, they can do it online. For example, an NGO working in the rural areas of Tamil Nadu can apply online. After registration they can apply for any scheme they are eligible for and even their registration in the schemes would be approved online. 
A scheme management system (SMS) is available, which is a time-bound sanction process. So, if any clerk or officer is not processing any information within 15 days, an automated alert would be generated to the higher level officer and action can be taken. n

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(The interview appears in the February 16-29, 2016 issue)