National Convention for Severe Intellectual and Multiple Disability

National Convention for Severe Intellectual and Multiple Disability

“In a Healthy and Friendly environment there is no disability; disability prevails in  a hostile environment”

This was quoted by Dr. Amitabh Mehrotra, Vice Chairman, SO Bharat UP who is 51 yrs of age and has Cerebral Palsy. Through a few anecdotes he made the audience confront the day to day struggle. He recounted, “During her travel, Mrs. Mehrotra who has a mild form of locomotor impairment was sceptical to get off at the station during rains, fearing that she would slip and fall”. If a slippery floor causes anxiety to persons without disabilities, it is not hard to imagine the degree of anxiety it may cause to any one with motor restrictions.

A first of its kind National Convention for Severe Intellectual and Multiple Disability was held from 26-28 June 2016 in Bhimtal, Uttarakhand, organized by the SO Bharat UP and Uttarakhand joint Chapters in collaboration with National Institute for the Empowerment of Persons with Multiple Disabilities (NIEPMD), Chennai. Adding a reality punch to the discussions a few eminent and braveheart persons with motor restrictions were invited to share their experiences. Dr. Amitav Mehrotra was one of them.

Motor Activity Training Program (MATP) and Healthy Athlete Program featured in a first ever National Convention for Severe Intellectual and Multiple Disability that was held from 26-28 June 2016 in Bhimtal, Uttarakhand. Organized by the UP and Uttarakhand joint Chapters, the camp witnessed participation of 39 athletes in MATP while 49 underwent Opening eyes, Special Smiles and Healthy Hearing screenings. The next two days of the convention held a conference deliberating with a group of 150 representatives from Research Institutes, Sports Organizations, SO Bharat State Committee persons, Special educators, Clinical Psychologists and Rehab professionals.

As per the latest Sample Survey, 940 out of every Lakh persons in India have Intellectual Disabilities while out of 940 there are 200 which have Severe Intellectual and Multiple Disabilities, bringing this segment of the population to over 25 Lakh (2.5 millions). This population faces challenges in Motor activities like walking, balancing, movements and severe Intellectual Disabilities which hinders their active participation and contribution in the Society.

Dr. Amitav Mishra, General Secretary SO Bharat, conceptualized the Program following research of the issue highlighting the scale of its

Untitledprevalence, the urgency to address it and to leverage the MATP format of Special Olympics to initiate impact. Lack of awareness about the existing Special Olympics MATP was attempted to be eliminated through its orientation to Coaches, families and Special Educators along with its demonstration on the first day. Effort were also geared to draw attention of the Special Olympics administrators and leaders to the efficacy of the Program

Dr. Amitav Mishra has been actively involved in clinical, teaching and research activities in the area of disability management and education since 1990. This follows high academic qualifications in the Sector. He is currently working as Professor at Indira Gandhi National Open University, New Delhi.

Objective

  •  To implement MATP all over India through Special Olympics State Programs in collaboration with specialized institutions.
  • To Create MATP Leadership Centre with Special Olympics Bharat to include training activities for Coaches, Special Educators, family members and Physiotherapists.

A team of highly accomplished persons congregated at Bhimtal, UP to deliberate and map future course for mainstreaming this population.

Resource Team

Name of Person Designation Session Conducted
Dr. Himangshu Das Director, NIEPMD Chennai Keynote Address (through video-conferencing)
Dr. Devender Banda Professor, Texas Tech University, USA Share useful tips on managing challenge behaviours in persons having severe and multiple disabulities
Dr. R. Rathna Former Director of AIISH, Mysore & AYJNIHH, Mumbai Share the challenges that sevice sectors in the country encounters
Dr. Amitabh Mehrotra Director, SPARC & EC Member – NIEPMD Share Experience- Challenges with groups having Severe Intellectual & Multiple Disabilities
Dr. Jayanti Pujari Director, Amity  Institute of Rehabilitation Sciences, Amity University Development of Personal, Social & life skills
Dr. Reena R Kumar Clinical Director/ Trainer SOAP Usefulness of Healthy Athlete Program in Special Olympics
Mr. Victor R Vaz National Sports Director, SO Bharat MATP
Dr. Ravindra K. Hora Neuro-peadiatric Rehab Expert, New Delhi Medical Problems

 MATP- Program

 Prior to conduct of MATP on the first day, 45 Coaches and officials were given an orientation to the program followed by assigning each of them one of the 8 sectors to control. In compliance with the MATP format, each Athlete was assessed individually, followed by assigning a specific activity to him/her. Care was taken that each Athlete did an activity for not more than 15 minutes.

Parents of the Athletes were exposed to a scientific categorization and motor functional-specific activity for the first time. They were quite drawn by the colourful display of the equipments which made the Athletes too, very happy. They were inquisitive and asked for more activities which they could assist within their homes to give regular practise to their children. They asked for more programs of this kind.

I take my child to a physiotherapist. He exercises regularly but these exercises are done repeatedly. This is something new, it is fun, and it is attractive”   – a parent at the Camp

The program significantly created a new environment and an opportunity for the parents to see their children in different light. It gave them hope.

The program continued categorising activities for wheel chair bound athletes and those without the wheel chair. While balling, hitting and throwing was conducted with the former category, the latter participated in stepping on the marker, crossing a hurdle and kicking a softball. The session also included an activity common to both, that focussed on fine motor and gross motor movements.

Simultaneously Healthy Athlete screenings were conducted on 49 Athletes the same day. Teams from Medical Colleges and Rehabilitation Institutes carried out the screenings

Screening Clinical Director College/Institute
Opening Eyes Dr. Viresh kumar Saxena Rohil khand Medical College, Bareilly (UP)
Special Smiles Dr. Reena R Kumar Divya Jyoti College of Dental Sciences and Research , Modinagar (UP)
Healthy Hearing Dr. Aek ram singh Jeevandhara Rehabilitation Research Institute, Bareilly (UP)

National Conference on Forgotten Citizens

The program progressed into a seminar that was held for the next two days presenting an unusual experience to the attendees through case studies, Health, Nutrition, Dental Hygiene along with specifically addressing Special Olympics screening procedures and a detailed introduction, objective and implementation module of MATP and more

Discussion Points

 The greatest contribution of MATP would be its impact on Health Issues. Unable to carry out the day to day motor movements makes this population susceptible to Health problems which get compounded due to neglect.

Local low cost equipment must be developed considering rural and remote backgrounds, to enhance accessibility.

Multiple Sensory Training including audio visual modules for the persons with Severe Disabilities , to be extended to key persons

Behaviour of Persons with severe disabilities is a strong deterrent, keeping them from participating in sports programs. Coaches, Special educators should be trained in Behaviour Management to gain confidence in handling situations involving challenging behaviour.

Physical and logistical arrangements around the venue hosting MATP should be scrupulously checked. It should be mandatory to check safety of the physical area along with emergency backup

Unaware of ways of managing persons with MATP has lowered the morale of their parents. MATP would enhance morale of the parents as well as that of Persons with Severe Intellectual disabilities

Medical and Housing issues must be addressed along with Respite Care. Incapable to be left alone even for sometime creates need of the civil society to make such facilities available to enable the parents/ caretakers to be absent intermittently.

Future Course

The representation from NIEPMD (National Institute For Empowerment of Persons with Multiple Disabilities) Chennai provided this conference a platform to draft out a proposal around the discussion points. Mr. I H Surati and Dr. Amitav Mishra took the lead in preparing the draft. The Conference will take place Annually with the next slated to be held at the Amity University, NOIDA

Opinion- Dr. Amitav Mehrotra

 Dr Amitav Mehrotra, completed his Post graduation from TATA Institute of Social Sciences and has had work experience of 10 years with TISCO in Jamshedpur. He was happy to be part of the Conference, to share his experiences and feels strongly that discussions during conferences like this should reach the policy makers. Amongst all issues of National importance, disability ranks low in the list of priorities. He is proud to have achieved so much but attributes them to the unrelenting support from his family. Although the Sugam Bharat Campaign is going on, it needs to be stronger.  “The Nation has to think seriously to include us in their mandate

We are Grateful to

National Institute for the Empowerment of Persons with Multiple Disabilities, Chennai (Govt. of India)

Rehabilitation Council of India  (Govt. of India)

Birla Institute of Applied Sciences, Bhimtal (Venue partner for MATP, Fun Games & HA)

SOS JN Kaul Institute of Education (Venue partner for National Conference)