NATIONAL TRUST USHERS IN NEW INITIATIVES FOR AUTISM, CEREBRAL PALSY, MENTAL RETARDATION AND MULTIPLE DISABILITIES

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Various initiative taken by the National Trust

Introduction

The National Trust is a statutory body constituted by an Act of Parliament namely The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999.

The objectives of the National Trust are as follows:-

  1. To enable and empower persons with disability to live as independently and as fully as possible within and as close to the community to which they belong;
  2. To strengthen facilities to provide support to persons with disability to live within their own families;
  3. To extend support to registered organizations to provide need based services during period of crisis in the family of persons with disability;
  4. To deal with problems of persons with disability who do not have family support;
  5. To promote measures for the care and protection of persons with disability in the event of death of their parent or guardian;
  6. To evolve procedures for the appointment of guardians and trustees for persons with disability requiring such protection;
  7. To facilitate the realization of equal opportunities, protection of rights and full participation of persons with disability; and
  8. To do any other act which is incidental to the aforesaid objects.

The National Trust has been set up to discharge two basic duties- legal and welfare. Legal duties are discharged through Local Level Committees and providing Legal Guardianship. Welfare duty is discharged through the Schemes.  The activities of the National Trust inter-alia include training, awareness and capacity building programmes and shelter, care giving & empowerment.  The National Trust is committed to facilitate equal opportunities, protection of rights and full participation of persons with disabilities (Divyangjan), covered under the Act.

Registration of Organizations

  1. As per section 12(1) of the National Trust Act, any voluntary organization, the association of parents of persons with disabilities or the association of persons with disabilities, working in the field of autism, cerebral palsy, mental retardation and multiple disabilities” already registered under the Societies Registration Act, 1860(21 of 1860), or section 25 of the Companies Act, 1956(1 of 1956), or as a Public Charitable Trust and under Persons With Disability Act, 1995 in the concerned state, can apply for registration in the National Trust. The registration of such organization shall be necessary with the Trust for availing benefits under the schemes of the Trust.
  2. On the new website of the National Trust, which has been launched on 24.11.2015 along with the 10 new / revised Schemes, the entire process right from applying to processing and approving or rejecting is online. Registration fee is also to be deposited electronically. The NGO have to enclose all the documents with the on-line application.  It is not only on-line but also very transparent as each applicant automatically receives an email alert informing the status of application. Registration of Organizations is done all around the year.
  3. The NGOs who are registered with the National Trust and whenever their registration under  PWD Act expires, shall be given a grace period of 6 months to one year, for getting new registration under PWD Act.

Local Level Committee

Under Section 13 of the National Trust Act 1999,  a Local Level Committee is required to be constituted in every district of the country for a period of three years or till it is reconstituted by the Board consisting of following members:–

  • – An officer of the Civil Service of the Union or of the State not below the rank of District Magistrate or a District Commissioner of a District;
  • – A representative of an organization registered with the National Trust; and
  • – A person with disability as defined in Clause (t) of Section 2 of the Persons with Disabilities Act, 1995(1 of 1996)

The function of Local Level Committee is to screen appoint, monitor and remove legal guardians. LLCs also promote activities such as Awareness generation, convergence and mainstreaming of persons with disabilities.

In order to make Local Level Committee more accountable, the online process for functioning of Local Level Committees has been started.  The Login ID and password of all the DC/DMs/LLC Chairperson, have been sent, so that they can start doing online processing of cases under Legal Guardianship.  For LLC membership, the NGO (registered with the National Trust) and PwD member have to apply online and after uploading the required documents they can submit the application.  The Constitution / Reconstitution Order can be downloaded after the approval of the Competent Authority of the National Trust.

Appointment of  Legal Guardians

  1. – Section 14-17 of The National Trust Act, 1999 elaborates on Guardianship for persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities to be given by the Local Level Committee. Guardianship is a need based enabling provision.
  2. – A guardian is a person who is appointed to look after another person or his property. He or she assumes the care and protection of the person for whom he/she is appointed the guardian. The guardian takes all legal decisions on behalf of the person and the property of the ward.
  3. – Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities are in a special situation as even after they have acquired 18 years of age, they may not always be capable of managing their own lives or taking legal decisions for their own betterment. Therefore, they may require someone to represent their interests in the legal areas throughout their lives. However, in cases of cerebral palsy and multiple disabilities, there may be a need for only limited guardianship because of the availability of enabling mechanisms and/ or scientific facilitations which enable such persons to function with varying degrees of independence.
  4. – Under section 14 of the National Trust Act, the Local Level Committee headed by the District Collector is empowered to receive application in Form A under Rule 16(1) & appoint guardians in Form B under Rule 16(2) for persons with Autism, Cerebral Palsy, Mental Retardation & Multiple Disabilities. It also provides mechanism for monitoring and protecting their interests including their properties.

State Level Coordination Committee (SLCC)

Every State/UT Government has been requested to set up a State Level Coordination Committee (SLCC) for effective implementation and monitoring of the schemes of the National Trust. The Secretary of the State Government looking after disability affairs is the Chairperson and the respective SNAC is the convener of the Committee. So far, SLCCs have been constituted in 26 States / Union Territories.

State Nodal Agency Centre (SNAC)

In order to carry out the activities of the National Trust, effective implementation at the state level and for coordination/liaison with the State Governments, a reputed NGO in every state capital is appointed as State Nodal Agency Centre (SNAC). There are 25 SNACs in the country and the list is in the website (http://www.thenationaltrust.gov.in/content/registered_organization.php). The National Trust provides funds for conducting institutional activities namely  meetings of  Registered Organisations / Local Level Committee (LLCs), State Level Coordination Committees (SLCCs), documentation / Reporting, honorarium for coordinator, misc. activities.

Launch of 10 New / Revised Schemes, new website and Scheme Management System- 

The National Trust launched 10 New / Revised Schemes, new website and Scheme Management System by Hon’ble Minister of Social Justice & Empowerment on 24-11-2015. The details of the New /Revised schemes are as under:

  1. – DISHA (Early Intervention and School Readiness Scheme):-This is an early intervention and school readiness scheme for children in the age group of 0-10 years with the four disabilities covered under the National Trust Act and aims at setting up Disha Centres for early intervention for Persons with Disabilities (PwDs) through therapies, trainings and providing support to family members. RO should provide day-care facilities to PwDs for at least 4 hours in a day (between 8 am to 6 pm) along with age specific activities. There should be a Special Educator or Early Intervention Therapist, Physiotherapist or Occupational Therapist and Counsellor for PwDs along with Caregiver and Ayas in the centre.

    The revised Early Intervention Scheme will have provision to cover 0 to 10 year age group of children in place of 0 to 6 age group as envisaged in the earlier scheme. The set up cost has been increased from Rs. 50,000 to Rs. 1.55 lakh.

  2. – VIKAAS (Day Care for 10+ years Scheme):-This is a Day care scheme, primarily to expand the range of opportunities available to a person with disability for enhancing interpersonal and vocational skills as they are on a transition to higher age groups. The centre will also offer caregiving support to Persons with Disabilities (PwDs) during the time the PwDs are in the Vikaas centre.  In addition it also helps in supporting family members of the Persons with disabilities covered under the National Trust Act to get some time during the day to fulfil other responsibilities. RO should provide day-care facilities to PwDs for at least 6 hours in a day (between 8 am to 6 pm) along with age specific activities.  Day care should be open for at least 21 days in a month.
  3. – SAMARTH (Respite Care Residential Scheme):- The objective of Samarth scheme is to provide respite home for orphans or abandoned, families in crisis and also for Persons with Disabilities (PwDs) from BPL & LIG families including destitute with at least one of the four disabilities covered under the National Trust Act. It also aims at creating opportunities for family members to get respite time in order to fulfil other responsibilities. This scheme aims at setting up Samarth Centres for providing group home facility for all age groups with adequate and quality care service with acceptable living standards including provision of basic medical care from professional doctors.

    The revised Samarth Scheme will have provision of work center. The per beneficiary monthly recurring cost has been revised from 1600 P.M. to 7,000 P.M.  The Scheme will have full time support in place of tapering grant.

  4. – GHARAUNDA (Group Home for Adults):-The objective of Gharaunda scheme is to provide an assured home and minimum quality of care services throughout the life of the persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities with adequate and quality care service with acceptable living standards including provision of basic medical care from professional doctors. Gharaunda Centre should provide vocational activities, pre-vocational activities and assistance for further training.

    The revised GHARAUNDA Scheme will have 1:1 ratio for LIG (including BPL) and above LIG PwDs, (which will be paid seats for Registered Organisations) in place of 5:1. There will be monthly recurring fund of Rs. 10,000 per PwD in place of one time payment of Rs. 8 lakh per   PwD.  In addition, there will be one time set up fund of Rs. 2.50 lakh, crisis fund of Rs. 10 lakh and fund for setting work center ranging    from Rs. 25, 000 to 1, 00,000.

  5. – ‘Niramaya’ Health Insurance Scheme
    The scheme is to provide affordable Health Insurance to persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities.  The enrolled beneficiaries get a health insurance cover upto Rs.1.0 lakh, by paying a nominal fee.
    The Heads under which the beneficiary can avail the benefit (The Benefit Chart) is as follows:
    Fee Chart :  The Complete Fee chart for enrolment and renewal under Niramaya Health Insurance Scheme, applicable from 1st April 2016 is as under:-

  6. – SAHYOGI (Care Associate training scheme):-This scheme aims at setting up Care Associate Training Cells to provide training and create a skilled workforce of caregivers to provide adequate and nurturing care for Persons with Disabilities (PwDs) and their families who require it. It also seeks to provide parents an opportunity to get trained in care giving, if they so desire. This scheme will provide a choice of training through two levels of courses primary and advanced to allow it to create caregivers suited to work both with Persons with Disabilities (PwDs) families and other institutions catering to the needs of the PwDs (NGOs, work centres etc.).

    There is a provision of training cost of Rs.4,200 per trainee, for primary course and Rs.8,000 for advanced course.  Also, stipend for trainee @ Rs.5,000 for primary and Rs.10,000 for advanced course has been introduced in the scheme.

  7. – GYAN PRABHA (Educational support):- Gyan Prabha scheme aims to encourage people with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities for pursuing educational courses like graduation courses, professional courses and vocational training leading to employment or self-employment. The National Trust will provide a specific amount per course to a PwD which will generally cover fees, transportation, books, out of pocket expenses (OPEs) etc.

    Wide range of courses covered in the revised scheme in place of only vocational training / skill development courses. There will be fixed recurring amount for the specified courses covering course fees, transportation, books, Out of Pocket Expenses in the revised scheme in place of Rs. 1000 p.m.  There will be Rs. 1600 p.m. for vocational courses and Rs. 2000 per month for Graduation/ Post   Graduation Course. Similarly, Rs. 5,200 per month will be given for Professional Course. In addition, there will be transportation allowance up to a ceiling of Rs. 20,000 per annum per person.

  8. – PRERNA (Marketing Assistance):- Prerna is the marketing assistance scheme of the National Trust with an objective to create viable and widespread channels for sale of products and services produced by Persons with disabilities (PwDs) covered under the National Trust Act. This scheme aims at providing funds to participate in events such as exhibitions, melas, fairs, etc. to sell the products made by PwDs. The scheme also provides an incentive to the Registered Organisations (ROs) based on the sales turnover of the products made by PwDs. The National Trust shall fund RO participation in national, regional, state and district level events such as fairs, exhibitions, melas etc. for marketing and selling products and services prepared by PwDs. However, at least 51% of employees of these work centres should be Persons with Disabilities covered under the National Trust Act.
  9. – SAMBHAV (Aids and Assisted Devices):-This is a scheme to setup additional resource centres, one each in each city of the country with population greater than 5 million (As per 2011 census), to collate and collect the Aids, software and other form of assistive devices developed with a provision of display and demonstration of the devices. The scheme also includes maintaining information, pertaining to aids and assistive devices present at Sambhav centre, on the National Trust website. These centres aim to provide information and easy access to devices, appliances, aids, software etc. for betterment and empowerment of PwDs of the National Trust disabilities.
  10. – BADHTE KADAM (Awareness, Community Interaction and Innovative project):-This scheme shall support Registered Organisations (ROs) of The National Trust to carry out activities that focus on increasing the awareness of The National Trust disabilities. Aim of scheme is to create community awareness, sensitisation, social integration and mainstreaming of Persons with Disabilities. The National Trust shall sponsor a maximum of 4 events for each RO per year. Each RO should conduct at least 1 event (either for community, educational institutes or medical institutes) in a year.

Implementation of revised schemes of National Trust w.e.f. 1st April, 2018

As approved in the 77th meeting of the Board of the National Trust held on 20th March 2018, the National Trust has started implementation of revised schemes w.e.f. 1st April 2018. Details of this is as under:

  • – In case of implementation of multiple schemes by a RO, the two schemes namely Disha and Vikaas will be merged as a single scheme namely Disha-cum-Vikaas. Similarly, Samarth and Gharaunda will be merged in a single scheme namely Samarth-cum-Gharaunda. In no case, the Registered Organisations(ROs) will be sanctioned more than one scheme at a time.
  • – Disha-cum Vikaas Scheme (Day Care):- For the Registered Organisations, who were implementing multiple schemes, an option for implementing merged scheme was given. Based on the consent given by the ROs and the scheme guidelines, these ROs were allotted the merged Disha-cum-Vikaas Scheme (Day Care) w.e.f. 1.4.2018. There are 35 such Centres.
  • – Samarth-cum-Gharaunda Scheme (Residential Care ):-For the Registered Organisations, who were implementing multiple schemes, an option for implementing merged scheme was given. Based on the consent given by the ROs and the scheme guidelines, these ROs were allotted the merged Samarth-cum-Gharaunda Scheme (Residential) w.e.f. 1.4.2018. There are 12 such Centres in the country.
  • – Details of the structure of these schemes is as under :
  • – No new sanction under any scheme of the National Trust shall be made till further decision of the Board or a sub-committee constituted especially for this to take a decision. However, this will not be applicable for North Eastern States and for the ROs implementing old GHARAUNDA Scheme. The revised Gharaunda Scheme is to be sanctioned in order to adjust the old GHARAUNDA Scheme into revised Gharaunda Scheme, as per the plan already approved by the Board. This will also not be applicable for awareness programmes on Inclusive India Initiative, organized under Badhte Kadam Scheme on direction of the National Trust.
  • – The ROs will be allowed to implement only one type of scheme i.e. Day Care (Disha-cum-Vikaas Scheme) or Residential Care (Samarth-cum-Gharaunda Scheme). This will be applicable for the existing scheme holders also.
  • – From the financial year 2018-19, for the existing scheme holders (ROs), implementing single schemes from the four centre based schemes, namely Disha, Vikaas, Gharaunda and Samarth, the funding pattern will be as follows :

    i.) The monthly recurring fund will be Rs.3000 + Rs.500 (transport allowance) per beneficiary, per month, under Disha and Vikaas Schemes and Rs.5000/- per beneficiary, per month under Gharaunda and Samarth Schemes.
    ii.) The number of beneficiaries will remain same as in the scheme guidelines i.e. Disha – 20, Vikaas – 30, Gharaunda – 20 and Samarth – 30.
    iii.) The maximum number of BPL beneficiary funded by National Trust will be limited to 20 BPL beneficiaries for Disha & Vikaas Schemes & and 15 BPL benef. for Samarth & Gharaunda Schemes.
    iv.) In no case, the ROs will be sanctioned more than one scheme at a time.
    v.) This is issued with the prior approval of the competent authority of the Board of the National Trust.”

  • – The Board in its 76th Board meeting held on 27.12.2017 agreed to the decision of DEPwD regarding discontinuation of Gyan Prabha Scholarship Scheme. No new enrolments will be allowed. The existing beneficiaries who are availing the scholarship will be allowed for reimbursement of their tuition fees and other benefits as per scheme guidelines till the completion of their ongoing course.

Workshop for training Master Trainers for assessment of Autism using INCLEN and ISAA Tools:

(a) 1st workshop from 31st August to 2nd September, 2016: The National Trust organized a 3 days National level Training Workshop from 31st August to 2nd September, 2016, in collaboration with Child Neurology Division, AIIMS for the professionals in the areas of Pediatrician, Psychiatrist and Clinical Psychologist, to train them as Master Trainers for assessment of Autism, using INCLEN & ISAA tools for issuance of Certificate in Autism. This Workshop on Autism Training is the first of its kind in India organized by the National Trust and was inaugurated on 31st August 2016 in Vigyan Bhawan by Shri Thaawarchand Gehlot, Hon’ble Minister (SJ&E) as Chief Guest, in the presence of Shri Krishan Pal Gurjar, Hon’ble Minister of State (SJ&E) as Guest of Honor. During the inauguration, Book on Autism and Tools, used as Modules for training were also launched by Hon’ble Minister (SJ&E). Prof. M.C. Mishra, Director, AIIMS and Prof. V. K. Paul, Head of Department of Pediatrics also attended the inaugural function and appreciated the effort of the National Trust and the Department of Empowerment of Persons with Disabilities, for taking this initiative. Prof. Mishra also assured for their association and long term collaboration with the National Trust and the DEPwD. More than 75 Professionals from 18 states participated in the Workshop. These Master Trainers will further train other professionals in their States to facilitate issuance of Certificate in Autism.

(b) 2nd workshop from 9th February to 11th February, 2017: The National Trust, in collaboration with Child Neurology Division, Department of Pediatrics, AIIMS, New Delhi organized the 2nd three-day Workshop for Training Master Trainers in Autism Tools-INCLEN & ISAA, from 09-Feb-2017 to 11-Feb-2017 in Vigyan Bhavan, New Delhi.

Though the workshop started on 9th Feb., 2017, it was formally inaugurated on 10th Feb, 2017 by Sh. Thaawarchand Gehlot, Hon’ble Minister, Social Justice & Empowerment. On this ocassioin, Sh. N. S Kang, Secretary, Department of Empowerment of Persons with Disabilities (Divyangjan), Sh. Mukesh Jain, Joint Secretary & CEO, National Trust, Prof. Balram Airan, Director, AIIMS along with a large number of officials from Department of Empowerment of Persons with Disabilities (Divyangjan), Ministry of Social Justice and Empowerment, AIIMS, New Delhi, doctors, NGOs and professionals in the field were present.

(c ) 3rd National workshop for training Master Trainers for assessment of Autism using INCLEN and ISAA Tools from 1-3 April 2017: A 3 days National Workshop for training of Master Trainers for assessment of Autism using INCLEN and ISAA Tools was organized in Vigyan Bhawan, New Delhi from 1st -3rd April, 2017. The workshop was inaugurated by Sh. Krishan Pal Gurjjar, Hon’ble Minister of State, Social, Justice & Empowerment in presence of Sh. Ramdas Athawale and Sh. Vijay Sampla, Hon’ble Ministers of State, Social, Justice & Empowerment.

(d) 4th National Workshop for Training on Autism Tools for Diagnosis, Management and Certification of Autism: The National Trust, in collaboration  AIIMS,  New Delhi, organized 4th National workshop for Training on Autism Tools for Diagnosis, Management and Certification of Autism Spectrum Disorder (ASD), to Pediatricians, Psychiatrists and Clinical Psychologists, from 6th to 8th April, 2018 at Vigyan Bhawan, New Delhi.   80 Doctors / Professionals from various parts of the country were trained as Master Trainers in the 3 days workshop.

National Conference on Autism – 3 April 2017:

People affected by Autism face challenges in many areas of their lives. Thus educating the public about Autism Spectrum Disorders (ASD) and raising Autism awareness has been the focus of large scale initiatives in many countries.

In 2007, the UN General Assembly declared 2nd April as World Autism Awareness Day (WAAD) and since 2008, 2nd April is being observed across the World as World Autism Awareness Day to increase awareness about Autism among general masses worldwide.

National Conference on Down Syndrome on 25.3.2017 at Pravasi Bhartiya Kendra, New Delhi:

For observing the World Down Syndrome Day on 22.03.17, the National Trust had organized National Conference on Down Syndrome at Pravasi Bhartiya Kendra, New Delhi on 25.03.2017 in collaboration with Muskaan – the Delhi State Nodal Agency Centre (SNAC) of the National Trust. The conference was inaugurated by Shri Thaawarchand Gehlot, Hon’ble Minister, Social Justice & Empowerment in presence of Shri Krishan Pal Gurjar and Shri Vijay Sampla, Hon’ble Ministers of State, Social Justice & Empowerment, Shri N. S. Kang, Secretary, Dept. of Empowerment of Persons with Disabilities (Divyangjan) , Dr. Kamlesh Kumar Pandey, Chairperson, National Trust, Sh. Mukesh Jain, Joint Secretary and Chief Executive Officer, senior State and Central Government officials, representatives from civil society and parents of Persons with Down Syndrome etc.

National Conference on Down Syndrome – 26 March 2018

The United Nations General Assembly on 19th December, 2011 declared 21st March as World Down Syndrome Day (WDSD). On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome. To observe the Down Syndrome Day, the National Trust organized National Conference on Down Syndrome at the Pravasi Bhartiya Kendra, New Delhi on 26.03.2018.

Launch of the Inclusive India Initiative of the National Trust on 6 June 2017:

The National Trust launched ‘Inclusive India Initiative’ on 6.6.2017 with an objective to bring inclusion in the Education, Employment and Community life of Persons with Intellectual and Developmental Disabilities (PwIDDs). The initiative aims at sensitizing masses and facilitating inclusion.

The initiative was launched by Hon’ble Minister for Social Justice & Empowerment, Shri Thaawarchand Gehlot in the presence of Shri Vijay Goel, Hon’ble MoS(I/C), Youth Affairs & Sports; Shri Rajiv Pratap Rudy, MoS(I/C), Skill Development and Entrepreneurship; Shri Amitabh Kant, CEO, NITI Ayog and Shri Yuri Afanasiev UN Representative to India; Shri N.S. Kang, Secretary, Department of Empowerment of Persons with Disabilities (Divyangjan).

Under this initiative, the following inclusive activities have been organized:-

(a) Inclusive Walkathon at Gurugram on 16.7.2017

An inclusive walkathon was organized involving professional runners, bikers, volunteers, students, corporate heads and people with intellectual and developmental disabilities, to spread a message of ‘Building an Inclusive nation’ where everyone is equal. The event had participation from 1,100 people from all walks of life, including 120 people with intellectual and developmental disabilities.

(b) Inclusive Employment Meet- 18 July 2017

An ‘Inclusive Employment’ workshop with CEOs/ HR Heads of corporates was held on 18 July 2017 in collaboration with FICCI Socio Economic Development Foundation. Vishal Mega Mart, Bank of America, Jindal Stainless, Marks and Spencers, Accenture and TCI Foundation committed and pledge to support Inclusive Employment. The success stories shared at the workshop highlighted the need of including persons with intellectual and developmental disabilities in our recruitment policies and recognize them as the pool of potential productive employees.

(c ) Consultation Workshop on Inclusive Education – 27 July 2017

With an aim to create accessible and inclusive institutions, for students with intellectual and developmental disabilities, a consultation workshop on Inclusive Education was scheduled on 27 July 2017 by National Trust. The workshop was a collaborative effort of school heads, teachers, special educators, parents from across 125 schools of Delhi-NCR, both government and private.

(d) Freedom From Bias- Inclusive Independence Day celebrations – 13 August 2017

A pan-India awareness campaign, was held across 18 locations, Delhi, Bangalore, Guntur, Jorhat, Mumbai, Hyderabad, Kolkata, Kanyakumari, Trivendrum, Varanasi, Patna, Raigarh, Ahmedabad, Udaipur, Dhanbad, Bhopal, Bhubaneshwar and Hoshiarpur on the eve of Independence Day. The aim was to sensitize people towards persons with intellectual and developmental disabilities with the common connecting theme– ‘Freedom From Bias’. The event was a huge success and garnered participation from diverse segments in society.

(e) Inclusive India Summit – 12 September 2017

At the Inclusive India Summit, thought leaders from diverse sectors of country participated to discuss issues and enable change for the brighter future of persons with intellectual and developmental disabilities (PwIDDs). Inclusion of intellectual and developmental disabilities (IDDs) in our fabric of society is essential and needs a higher level of commitment. The Summit was inaugurated by Shri Thaawarchand Gehlot, Hon’ble Minister, Social Justice & Empowerment; Smt. Smriti Irani, Hon’ble Minister, Information & Broadcasting and Textiles; Shri Krishan Pal Gurjar, Hon’ble Minister, State for Social Justice and Empowerment; Shri Vinay Sahasrabuddhe, Member of Parliament, Rajya Sabha and attended by Ms. Ira Singhal, 2014 UPSC Topper; Mr. Vivek Oberoi, Bollywood Actor; Mr. Yuri Afanasiev, UN Resident Coordinator; Smt. Deepa Malik, 2016 Paralympics Champion; Sh. Shekar Naik, Indian Blind Cricket Team; Mr. Muzaffar Ali, Indian film maker and poet.

(f) Inclusive India Programme in Dyal singh Evening College, Delhi – September & October 2017

An Inclusive India programme focusing Education organized in Delhi in collaboration with Dyal Singh Evening College. Across Delhi University, September month was dedicated as the awareness month for Inclusive India Initiative. Optimum usage of social media resulted in steady increase of followers on the social media handles of Campaign. Catalyzing the accomplishment of the project, first online event – ‘The battle of Ink’, a creative writing competition on the theme of ‘The spirit of Inclusive India’ was launched on 8th September 2017, whereby write-ups, poems, encounters, 4-liners, dialogues from all the colleges of DU were invited.

(g) Regional workshops on Inclusive India – November & December, 2017

Regional workshops on Inclusive India Initiative conducted in Gangtok, Jorhat, Dehradun and Kangra (H.P.) during November-December, 2017, in which officials from the National Trust, State government and Hon’ble MP and MLA concerned districts participated. These workshops were attended by District Social Welfare Officers, medical officer, legal professionals, NGO’s, Divyangjan and their parents.

(h) Seminar on Inclusive India and Self Advocacy – 10 February 2018

National Trust in collaboration with Department of Social Justice Madhya Pradesh has organized a seminar on “Inclusive India and Self Advocacy” in Bhopal on 10.2.2018. The seminar was conducted with the aim to create awareness amongst the policy makers and stakeholders. Shri Shivraj Singh Chauhan, Hon’ble Chief Minister of Madhya Pradesh inaugurated the seminar.

Other activities of the National Trust

(i)    Workshop on Social Role Valorization:

The JS&CEO, the National Trust attended the Workshop on Social Role Valorization, organized by KeyStone India and Hans Foundation, in Kolkata on 12th January, 2017. Various issues in the proposed Development of India’s future in designing, supporting and in visioning responsive, respectful and individualized support to Persons with Disabilities (Divyangjans) to have access to full and meaningful lives, were discussed.

(ii)  Local Level Committee meeting on 9.8.2018 at Jabalpur, MP

The Assistant Legal Adviser of the National Trust, Shri U K Shukla, attended a meeting in Jabalpur on 9th August, 2018 morning, organized by the District Authorities, Jabalpur, regarding the functioning of the Local Level Committee and the Schemes and activities of the National Trust.  The District Magistrate Jabalpur and other district officials (post office, school, sub-registrar office) attended the meeting.  In the evening of 9th August, 2018, the Additional Advocate General, Shri R.K. Verma organized a meeting of the practicing lawyer in the Jabalpur High Court.  The Assistant Legal Adviser, National Trust explained the importance of the National Trust Act, 1999 especially, appointment of legal guardian through Local Level Committee for the welfare of persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities where the jurisdiction of the courts are restricted.  The Schemes and activities of the National Trust were also explained and the leaflets were distributed among the participants.

(iii) State Level Workshop on Legal Guardianship Organized by SNAC Kerala and Social Justice Department, Govt. of Kerala.

The workshop was organized by Govt. of Kerala on 12th February 2019 at Hotel Prasanth, PMG Junction, Thiruvananthapuram. The workshop was to be inaugurated by Smt.Shylaja Teacher, Hon. Minister for Social justice & Health, Govt. of Kerala but for some reasons could not do so. The meeting was attended by Shri Biju Prabhakar, IAS, Special Secretary, Social Justice, Govt. of Kerala, Shri.Jafar Malik, Director and Sh UK Shukla, Assistant Legal Adviser, National Trust. Sh. Shukla presented on schemes and programmes of the National Trust and Legal Guardianship Issues. As the Govt. of Kerala has been very proactive in this area, there have been varied doubts amongst the participants which were amicably resolved by Sh Shukla.

(iv)  Review Meeting of the State Nodal Agency Centres (SNACs) of the National Trust –

A Review Meeting & Workshop for Training of SNACs was held on 12th November, 2018 under the Chairmanship of Dr. Kamlesh Kumar Pandey, Chairperson, the National Trust. Shri Anil Joshi, Board Trustee; officials of the National Trust; Coordinators of SNAC from 23 States/UTs attended the workshop.

All the SNAC Coordinators presented their Action Taken Report along with their areas of work in detail. The SNAC Coordinator of Punjab and Madhya Pradesh made presentation of the work done by them in their states.

During the meeting, it was decided to withdraw the additional charge from those SNACs who are looking after the charge of more than one state. These States will be directly looked after by the National Trust. The SNACs were requested to explore the way for raising funds through Civil Society. SNACs were asked to educate Registered Organizations (ROs) of their respective states to explore the way for raising funds through Civil Society and enhancing their professional skills.

(v)   Consultation meeting with W.H.O.

A consultation meeting held with Dr. Hendrik Jan, Bekedam, W.H.O. representative in India on 22-01-2019. Shri Nikunja Kishore Sundaray, JS&CEO, National Trust, Prof. (Dr.) Sheffali Gulati, Chief, Child Neurology Division, AIIMS, Delhi and other officials of the National Trust were present in the meeting. The main agenda of the consultation meeting is developing collaboration between the two organizations for training doctors on assessment and certification of Autism and initiating universal Early Intervention programme for children with intellectual and developmental disabilities.

(vi)  National Consultative Seminar on mainstreaming the marginalized through Digital Inclusion”

The JS&CEO, National Trust made a detailed presentation in “National Consultative Seminar on mainstreaming the marginalized through Digital Inclusion” organized by PHD Chamber of Commerce & Industry, Delhi on 1st February 2019 in Ambedkar International Center, Delhi.

In the Presentation, the JS&CEO informed about Digital Technology for persons with Disabilities, present scenario including the strongest mandate given in the Rights of Persons with Disabilities Act, 2016 on Accessibility, Survey and Audit on Accessibility, Digital Inequalities and Information and Communication Technology (ICT) as enabler.

(vii)      State Level Coordination Committee (SLCC) meeting of the National Trust in Uttarakhand-

The JS&CEO, National Trust participated in the SLCC meeting along with Assistant Legal Advisor in Dehradun on 4th February 2019. The meeting was attended by the Additional Chief Secretary (ACS) and Principal Secretary, Social Welfare Department, Uttarakhand, State Disability Commissioner, Additional Secretary, State Social Welfare Department.

SLCC is constituted to liaison with various state Government Departments for effective implementation of schemes and activities of the National Trust in state. During the meeting, several issues including activation of Local Level Committee (LLC) of the National Trust in all districts of Uttarakhand, setting up scheme centers of the National Trust in Uttarakhand and motivating NGO’s to come in the umbrella of the National Trust were discussed.

(viii) National Workshop on Community based Rehabilitation of Persons with Disabilities and Release of a Book “The Journey of CBR”

The JS&CEO, National Trust made a presentation in the “National Workshop on Community Based Rehabilitation” at India International Centre, Delhi on 6th February 2019. The Secretary, Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment was the Chief Guest on the occasion.

During the presentation various issues of Persons with Disabilities and their redressal through modern age Digital Technology were highlighted. This workshop was organized by Vikas, a registered organization of the National Trust based in Bhubneswar.

(ix) Global Symposium on Artificial Intelligence and Disaster Management in JNU

A Global Symposium on Artificial Intelligence and Disaster Management was organized by the Special Centre for Disaster Research, Jawaharlal Nehru University in New Delhi on 12th-13th March 2019.  The experience of JS&CEO, National Trust in mainstreaming disability with disaster management considered a landmark in the annals of disaster management in the country.

He made a presentation in this Symposium on the Disaster Preparedness in Odisha. He also emphasized the safeguard measures for the senior citizens, women and persons with disabilities which have to be implemented across the country. The presentation was widely applauded among all the National and International participants.

(x)   Renewal of MOU with Hans Foundation

The National Trust renewed an MOU with Hans Foundation on 17.1.2019. Under the MOU, Hans Foundation provides financial assistance to the National Trust for implementation of schemes and activities. The Hans Foundation has funded the National Trust an amount of  Rs. 1,17,15,954/- under Niramaya scheme through earlier MOU, which has signed on 24.11.2015 for 3 years i.e till 23.11.2018. The present MOU is effective from 24.11.2018 for another 3 years.

(xi) Gramodaya Mela

The National Trust participated in ‘Gramodaya Mela’ at Chitrakoot during February 24-27, 2019 as part of celebrating the birth centenaries of great social reformers Shri Nanaji Deshmukh and Shri Deendayal Upadhyaya. During the Mela, booklets and brochures of the National Trust displayed. The visitors informed about the schemes and activities of the National Trust through power point presentation. Videos and movies also showed depicting the achievements and good practices of the Persons with Intellectual and Developmental Disabilities and the organization/professionals working in the field. Various issues of Divyangjan including issuance of disability certificate, getting various facilities and privileges to these persons through the Central and State Government schemes were also addressed.

(xii)      Survey for identification of areas for Building Medico Legal Capacity of Persons with Intellectual & Developmental Disabilities.

Building legal capacity of Persons with intellectual and developmental disabilities is one of the objective of the National Trust. Provision for appointment of legal guardians of these persons has been made in the National Trust Act. In addition, there are several issues which are being faced by these persons in their entire life span. In order to assess these issues, the National Trust has initiated a survey through a Questionnaire, which has been circulated to over 1200 stakeholders including the Registered Organisations of the National Trust, Board Members and Experts/ Resource persons associated with the National Trust.

(xiii) Down Syndrome Parents meet

On the occasion of World Down Syndrome Day, the JS&CEO participated in parent meet organized by Down Syndrome Federation of India on 15.3.2019 at Taj Mahal Hotel, New Delhi  and addressed the meeting. He met the press also and addressed several queries on the issue.

(xiv) Inclusion of 21 Disabilities covered under the RPwD Act, 2016 in the Census 2021.

The officials of the National Trust participated in ‘Data Users Conference for Census of India 2021’ organized by office of the Registrar General & Census Commissioner, India on 9th -10th April 2019.During the conference, the National Trust requested the Census Commissioner to include 21 disabilities covered under the RPwD Act, 2016 in Census 2021.

The Joint Secretary & Chief Executive Officer, National Trust sent a letter to the Registrar General & Census Commissioner for including all the 21 disabilities covered under RPwD Act 2016. He has also requested that issuance of Disability Certificate or otherwise may also be recorded in the Census Data of 2021. This has been done in order to have a clear status of Divyangjan in order to make new Scheme/ Policy for them.

(xv) A Chapter on Disability in Social Science Subject in School Education

Awareness about disability is an important aspect for inclusion of Persons with Disabilities in the society. A number of steps are being taken to sensitize different stakeholders on the issue.  In order to have a long lasting impact on disability education in the society, it is important to have a chapter at school level in the Social Science subject of class VII & VIII.  The Chapter will be introduced in CBSE, ICSE and State Boards. For this initiative, the National Trust has requested to the United Nations International Children’s Emergency Fund (UNICEF) and National Council of Educational Research and Training (NCERT) for sharing global best practices.

(xvi) Visit of Cyclone hit area of Odisha and proposal for starting a rehabilitation scheme- ‘Sampark- In the hour of Need’ for the present and all future disasters, as a Standard Operating Procedure (SOP)

Odisha has been hit by a Super Cyclone ‘ Fani’ on 3rd May, 2019. 5 districts of the state namely Puri, Khurda, Cuttack, Kendrapade and Jagatsinghpur were most affected. The Govt. of India has sent a central team to Odisha and state Govt. has estimated damages over Rs. 7,000 Crore.  The State Govt. has initiated infrastructure restoration on a massive scale. The Govt. of India is responding in equal measure.

To assess the impact of the Cyclone on Persons with Disabilities, the JS&CEO, National Trust visited the state on 6th and 7th June, 2019 and held meeting with the State Government officials and NGOs  and made field visit. Immediately thereafter, a team of officials of the National Trust led by Dr. Ashish Kumar, Board Member visited the affected areas on 12th and 13th June, 2019. The team met the Chief Secretary Odisha, State Govt. officials, SNAC/ ROs and other NGOs and discussed the various rehabilitation measures for Divynagjan. During the visit of affected areas and meeting with Divyangjan and their parents it was felt that there is a great need of time bound intervention and counselling to Divyangjan and their families affected by the Cyclone. The Severity of the situation can be judged by the fact that even after one month, there is no power and water supply in many of affected areas. The parents of Divyangjan, mostly of whom are from rural areas and very poor are finding difficulty in maintaining themselves on their day to day needs, leave their Divyangjan children. The State Govt. and other agencies are working for restoration of essential services round the clock, but that is   not adequate, because their focus is general and our target group are High Support Need.

Keeping in view of the very grave situation in the affected areas, the National Trust is planning to introduce a rehabilitation scheme named ‘Sampark- In the hour of need’ for providing necessary support to Divyangjan in case of a natural calamity like- Cyclone, Earthquake, flood etc.  for a period of 100 days.

The National Trust will implement this scheme through the following 12 steps-
  1. – More and more NGOs of the affected areas to be registered with National Trust on priority basis.
  2. – Special Drive to identify Divyangjan living in their own family and those without family and living in cyclone affected areas.
  3. – Special drive for issuance of Disability Certificate to these beneficiaries will be organized by the National Trust in collaboration with the State Government.
  4. – All indentified beneficiaries of the National Trust to be enrolled under Niramaya- Health Insurance scheme.
  5. – RO’s may be sanctioned Awareness program from Badhte Kadam (Awareness, Community Interaction and Innovative Project) in affected areas. During Awareness programme necessary psychological and trauma counselling will be given to Divyangjan. Provision of Travel Allowance for beneficiaries on actual basis. RO’s to certify this and include in the Awareness Programme proposal.
  6. – Disha / Vikaas / Samarth / Gharaunda scheme may be sanctioned in the affected areas. Under Gharaunda scheme, there is a provision of crisis fund of Rs. 10 Lakh. The same will be utilized for repair and restoration of infrastructure to make the centre functional. In addition, it is proposed to extend the provision of crisis fund under Samarth scheme amounting to Rs. 10 Lakh and Disha/Vikaas scheme upto Rs. 5 Lakh as a special measure since all these centres have been severely affected and damaged during the cyclone.
  7. – On the direction of Chairperson for financial assistance, all the schemes will be restored with the initial funding pattern and scheme guidelines as a special measure to tide over the crisis, for 100 days. This will be effective in the 5 most affected districts of Odisha.
  8. – State Government will be requested to identify the beneficiaries and provide necessary support.
  9. – Those who are not included in any scheme should be identified and covered with the Niramaya Health Insurance Scheme, Assistance to Disabled Persons for purchase / fitting of Aids and Appliance (ADIP) etc.
  10. – In addition to the above, the JS&CEO, National Trust may be authorized to take any other action in the interest of the welfare of Divyangjan affected by the Cyclone.
  11. – For SNAC and RO’s, Public Transport shall be availed as much as possible. Private Transport shall only be availed where Public Transport is not convenient. Bhubaneswar will be the base station for transport and other activities.
  12. – SNAC to monitor this and submit report on monthly basis. Extra fund for travel may be sanctioned to SNAC on case to case basis (on submission of bills on actual reimbursement basis). Short videos of the major activities for making a 9 minutes film on the initiative will be made.

All the activities will be well documented which will be a guide for future programmes.

Fund to RO’s to be released along with the released of funds under Badhte Kadam Awareness program on submission of complete documents and reports

(xvii)    Setting up a Library in the National Trust Office

The area of Intellectual & Developmental Disability need regular follow up & Review in regard to the day to day Research & Innovation taking place in the field. The books purchased in the issues will not only increase the knowledge of the Readers but also will help in replicating the same on day to day working.

The National Trust has been set up a Library in the Resource Room in Ground Floor. 34 books related to the Disabilities covered under the National Trust Act have been procured. The review of these books has been prepared by officers/staff of the National Trust.

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