RECENT NEWS ON PARIVAAR!

January 2015

Ø  A workshop on Self advocacy was conducted Yashaswini Swavalambana Trust (YST) on their Vocational Centre on Bannarghatta Road on January 24th 2015. Nearly 60 parents, teachers attended the workshop.

FEBRUARY

Ø  A new chapter was created in Chennai with the participation of 40 self advocates in the month of February 2015. This was done at the initiative of Mr. Parthiban, National Secretary, SAFI. Subsequently they are meeting regularly. (Photo enclosed)

 

Ø  As a followup of the workshop at YST, a one day Training was organized in the month of February 2015. A SAFI unit  was created.  

 

Ø  14th & 15th February 2015 - The 7th RPM was held at Hind Motor, Hooghly. It was organised by Uttarpara Ashraya with the full support of the Parivaar-Bengal team. Self- advocates were given pride of place as a group in front rows of the hall and an opportunity for them to express their thoughts was made

MARCH

Ø  SAFI – Karnataka Chapter and the National Secretary Mr. G . Parthiban had a meeting with visiting delegation from Keystone Foundation and its Indian partner HANS Foundation and discussed their problems on March 21, 2015.

Ø  21st March 2015 - World Down Syndrome Day was celebrated by self- advocates, by building awareness in a public park through a song and dance performance and distribution of awareness literature.

 

April 2015

Ø  2nd April 2015 – Celebration of World Autism Day took place with the involvement of self- advocates participating and helping in the organisation of separate several walks organised throughout the day. Awareness spread as spectators enjoyed a street performance. In Asansol a seminar was held and at Durgapur a blood donation camp. A Press Conference was organised by Commissioner, Disabilities with torchlight gathering afterwards (on 1st April) where we were in large numbers with our children

 

Ø  Parivaar conducted one day workshop on National Trust Schemes & Programs for Parivaar leaders at National institute for the Mentally Handicapped, Secunderabad on April 12, 2015 with support from the Ministry of Social Justice & Empowerment- Department of Empowerment of Persons with Disabilities. Mr. Mohanty, Deputy Director, NT, Mrs. Manjula Kalyan, SNAC AP were the resource persons

 

Ø  National Executive Council Meeting of SAFI at Anakkara, on  APRIL 25-27, 2015 at PASTORAL ANIMATION CENTRE, ANAKKARA, KUMILY, IDUKKI DIST, KERALA. This is the second meeting of the Executive Council after the formation of SAFI at Delhi in October 2013. The EC reviewed the decision taken at the last EC meeting( Action taken Report), Reports from States,  everyone took turn to  speak on their experience and their views for SAFI and finally discussed the organization of  National Convention at Udaipur. Please find attached the Minutes of the meeting . Annexure 3. (Photos separately enclosed).

 

Ø  SAFI National secretary attended a workshop on Livelihood organized by Leonard Cheshire Disability at Chennai and made a presentation.  As a follow-up a second workshop was held at Cuddalore.   (Photos attached).

 

Ø  SAFI Karnataka chapter at Bangalore and Mysore are regularly holding meetings and discussing their problems and thus enhancing their capacity.

 

MAY

Ø  SAFI Karnataka had its annual General Body meeting on May 31st 2015 at Gem School of management at Mysore. Nearly 150 self advocates came together for this meeting. A New set of office –bearers were elected for a three year period with Mr. Ram Aiyappa as President. (Photos enclosed).

 

Ø  The self advocates of Nagpur Chapter in Maharashtra have been participating in the Clean India Mission (Swachh Bharat Abhiyan) campaign at Nagpur.  They were in the news of the local papers.

 

JUNE:

Ø  Parivaar and its State Federation in Tamil Nadu had a fruitful meeting with INTACT INDIA at Trichy in June 2015 for collaboration to expand Parivaar network in Tamilnadu and support for SAFI. In principle they have agreed to help us to form 10 parents associations in Tamilnadu and conduct SAFI state meet and a mentors Training program.  We have already conducted the Mentors training program for Special educators from Trichy and Coimbatore and State level SAFI meeting.

a.           Strengthening State Federation of Tamil Nadu:

Parivaar and its State Federation in Tamil Nadu had a fruitful meeting with INTACT INDIA at Trichy in June 2015 for collaboration to expand Parivaar network in Tamilnadu and support for SAFI. In principle they have agreed to help us to form 10 parents associations in Tamilnadu in 2016.

 

 

No

Name

Designation

Address

1

Sri. Samarasa Pandian

President

16-Thilagar Street-Varadharajapuram, Coimbatore- 641 015.

samarasapandian@gmail.com

09443725925

2

G. Soundara Rajan

Vice President

Anugraha Charitable Trust

SF No:  36/1   Panchashipuram village, Hosur, TN

09480585424

deepugsr24@yahoo.co.in

3

P. Sundaram

Gen. Secretary

471 Nedunchelian salai

K.K.Nagar-

Truchiapalli- 620 021

ponnusundaram@gmail.com

09944548739

 

4

A.  Appunandagopan

Treasurer

475/63910 th street B.V Colony,

Vyasar padi-Chennai - 600 -039

08682840727

5

Smt. R. Uma

Jt. Secretary

111/33 Nataraj Nagar 

State Bank colony. Thoothukudi 628002, TN

cruma45@gmail.com

09486983721

 

JULY

Ø  TRAINING SESSION FOR SAFI AT THANE, MAHARASHTRA:

Snehalaya organized a training session on the request of Parivaar, on Saturday, 4th July, 2015 at their premises to keep cost low.  There were 24 Self Advocates who participated from Thane.  There were comparatively few parents and few staff members who were present and got involved in the activities organized during the day by the Mentor, Mr. Babura Shirture.  There were three plays, depicting behavior in the special persons.  Resulting in good and positive show by the particular SA immediately.  Forms sent by Parivaar were distributed and filled up accordingly.  An amount of Rs.2300/- was collected from each SA @ Rs.100/- as membership to SAFI.  This step forward in SAFI was satisfying.  A special thanks to the President, Inner Wheel Club of Thane Garden City who contributed to food expenses.  Thanks to Mr. Baburao Shirture also for coming and organizing activities and spending a day with us. (a short report By Mrs. Olivia D’souza) .

 

Ø  Mentors Training at Trichy: July 9-11, 2015 at INTACT, TRICHY: Self advocacy Mentors training was conducted by Parivaar at INTACT INDIA, Trichy on July 9-10, 2015 for 25 Teachers representing various schools in Trichy and Coimbatore. This was funded by INTACT Trichy an NGO in the field of intellectual and developmental disabilities.

 

Ø  CBM Sponsored Bhartiya Viklang Jan Morcha (Disabled Peoples Organization) Meeting at Betul, MP: July 13-17, 2015: Mr. G. Parthiban – national Secretary of SAFI participated in the first National Level Meeting of Bhartiya Viklang Jan Forum (BVJF) on 14th to 16th July 2015 at Betul Madhya P radish.

 

Ø  17th July 2015 – A young man with cerebral palsy was pushed off a bus by the conductor of Route 259. The Disability Identity Card was rejected and thrown on the floor of the bus and demand made for money which the young man did not have. He suffered face and shoulder injuries. A meeting with the bus syndicate was held on 27th July where three self advocates of Parivaar-Bengal were able to speak about their problems. This opened the eyes of the President & Secretary of the Bus Syndicate route no. 259.They had only been told about CP at the first meeting held earlier. They had not even seen a disability card which was shown to them by two of the parents present. Three points were given for a bus sticker by our self advocates, helped by the mentor. The syndicate subsequently put these on all buses on their route.

 

AUGUST

Ø  Press Meet was organised on 12th August, jointly by Jt. Council of Bus Syndicates, IICP &Parivaar-Bengal at the Press Club where a 10 point charter of demands was submitted by the self- advocates of IICP &Parivaar-Bengal . This was covered in the newspapers the next day. A detailed report and photos were sent to Parivaar NCPO by email.

Ø  On Rakhi Purnima, 27th & 28th August, self advocates stood at various bus stops across the State including Howrah, Durgapur and Hooghly and tied rakhis on the bus conductors and gave out flyers for the public. This was a very effective exercise and the effects were felt by the bus fraternity and commuters indelibly

 

SEPTEMBER

Ø  13th September 2015 The State level self- advocacy meet took place where SAFI Parivaar Bengal was formed, with a President, Gen. Secy., Treasurer. The upcoming National SAFI meeting was discussed and responsibilities shared by mentors and self advocates

 

Ø  Parivaar in coordination with BPA, Ahmedabad conducted two parents awareness workshop at Sayla and Palanpur in Gujarat on September 18, 2015 and September 29, 2015 in association with Sammilit Vikas Jankari- a unit of BPA.

Objectives: a. sharing information about government schemes and entitlements for their children. B. Understanding the limitations of their children and how they can focus on abilities of their children. C. Importance of Parents’ organization and the process involved in it. D. Developing SHGs of parents along with their children.

 

The local organization had invited 190 Parents at Sayla and 115 Parents in Palanpur with their PwiDDS for the workshop. All the parents came from remote villages, where they have hardly any access to the services. A. The first session was on identifying the abilities of children and providing them appropriate opportunities. B. The second session was on various government schemes and entitlements. C. The third session was on child protection issues and responsibility of parents. D. The last session was on developing parents group and organizing themselves.

 

All the sessions were conducted by experienced faulty that include parents  and professionals like Lt. Col. Dr V K Gautam, president, Parivaar, Mr. Vishnubhai Patel, VP, Parivaar &Secretary of SWMR a parent Association in Ahmadabad, Mrs. Vimal Thawani, Project Director, BPA, and Mr. Vanraj Chavda, Project Coordinator, Sammilit Jankari. The sessions were very interactive and parents’ queries were addressed. Parents were convinced to get them organized and form parents group.

Conclusion: The training at both the locations went very well. Parents were very motivated and willing to form parents association and work for the welfare of their wards.

 

Ø  Regional Parents Meet (RPM) at Warangal, Telangana on 20-21, September. Over 120 delegates from Karnataka and Telangana states attended.  RPMS are a joint project of Parivaar with National Institute for the Mentally Handicapped and Department of Empowerment of Persons with Disabilities – MSJE, Government of India.

Ø  RPM at

OCTOBER

v 
One day Capacity Building Workshop for Parents

One day parents awareness program and capacity building was organized on 15-10-2015 at Prem Pragati Special School Rajgarh. The program was organized by Madhya Pradesh Vikalang Sahayata Samiti Ujjain with support from Parivaar under CBM-Parivaar Partnership project. The District Collector  of Rajgarh Mr Anand Sharma IAS and  Mr Shashikant Shukla IPS, Superintendent of Police , Rajgarh to inaugurate the workshop. There were also Officers from the Department of Social Justice and other Departments and NGO members. Dr Diwakarbhai Shah from Parivaar and Fr. Anthony from MPVSS were the Resource Persons to address the parents with lot of enthusiasm to constitute parents association. Fr George the Manager of Prem Pragati Special School Rajgarh welcomed all the dignitaries and parents. Mr Diwakar Shah sensitized he parents on their rights and advantages of having association for the parents. Fr Anthony spoke on stress management and proper identification of the problems regarding Mental Retardation. There, we could witness the active participation of around 130 parents from all over the district. As a result of the sensitization parents were happy and ready to initiate the process to form two parents groups in Rajgarh and Biora.

v  Awareness and Capacity Building Program for Parents


One day district level workshop was organized for the Parents of mentally handicapped children of Shajapur district on 21/11/15 by Madhya Pradesh Vikalang Sahayata Samiti Ujjain with support of PARIVAR and CBM. Program started at 11.30 am with the prayer song by the children of NavJyoti Shajapur. Fr Augustine the Manger of the School welcomed the dignitaries and the participants. Mr H. L. Verma Adl CEO of Zilla Panchayat Shjapur was the cheif guest of the program. From the education department  Mr Rajanish Mahiwal was there to encourage the parents. Mr Diwakar Shah from PARIVAR was the main Resource Person for the meeting. He enlightened the parents on the need of having a parent’s association for the betterment of the children with special needs. He shared his experiences in his way to become a successful parent for his son. He also shared his future plan for his son so that he may not left alone after him. Fr Jose from MPVSS Ujjain spoke on the rights of people with disabilities and related government schemes. He encouraged the parents to come united to get the rights of the children.  Around 42 parents were present in the program from different parts of the districts. At the end of the program we were successful to form two parents’ groups in the district, respectively one in Shajapur and one in Shujalpur. Parents also discussed among them their common problem in their daily life. They felt the need of coming together for their rights.

Ø    8th October 2015 – Felicitation of a young adult (of Parivaar-Bengal registered with SAFI), by Govt. of India, Dept. of Mass Education Extension Dept., was done along with over 150 from across the State, for meritorious achievement. (TarunKundu)

Ø    17th – 19th October 2015 - Puja Parikroma– seven self- advocates donned the role of judges to select the best puja pandals in South Kolkata from 50 pandals, based on excellent theme, warm hospitality, artistic and creative excellence, ethnic environment. They then gave away the prizes to the deserving pandals. This was an effective project for awareness and inclusion in the community.

Ø    RPM at Haldwani, Uttrakhand on 10-11, October 2015. Nearly 50 parents from Uttarakhand.

Ø    RPM at Bhavnagar, Gujarat. On 24-25, October, 2015. Over 190 parents from Maharashtra, Gujarat and Goa attended.

Ø    RPM at Sonepur in Odisha was held on October 30-31, 2015. Nearly 150 parents from Odisha, West Bengal and Bihar attended the program.

 

NOVEMBER

v  Awareness program at Dhar: Nov. 3, 2015: 130 participants. Local NGO AASRA, INDORE, AT DIET, DHAR. Mr. Prajeshchandra Pandey IAS, Additional Collector, Dhar was the chief Guest. Smt. Jayashree  Kiyavat,  Collector & Director of District Mission of SSA, Dhar. Mr. Srikant Banoth, Chief Administrative Officer and Director, District Planning Board, SSA were guests of honour.

Dr Diwakarbhai Shah, Sri. Kamalsingh Thakor, Coordinator, SSA Mr. Sanjay Sukhla, Principal, local NGO, Mr. Sunil Trivedi, Coordinator, IED,SSA,  Mr. Bushan Deshpande, Coordinator, E & R, SSA were the resource persons for the one day workshop. A new parent association will be created at Dhar.

v  COMPLILATION OF GOVERNMENT ORDERS;

Parivaar has been able to complete the project on compilation of government orders- a project undertaken in 2014. A soft copy of the same has been shared with CBM. It is being circulated among the states for further improving the information before publication.

v  8th November 2015 – The members representing SAFI Parivaar Bengal met with their mentors to discuss the topics they were going to speak on and the other details like performance and travel requirements, in preparation for the Second SAFI National Meet at Udaipur on 26th & 27th November 2015.

v  20th November 2015 – Final meeting of SAFI Parivaar-Bengal team members going to Udaipur for the 2nd National SAFI meeting. Nine self-advocates and four mentors make up the team.

v  Andhra Pradesh:  SAFI conducted training programs in Warangal and Vijaywada and formed new groups.

v  November 26-27, 2015 Parivaar Executive Council met at Udaipur

v  SAFI National Convention was held on November 26-27, 2015at Maharana Pratap  Agriculture University, Udaipur, Rajasthan.

v  National Parents’ Meet was held on November 28-29, 2015 at Rajasthan College of Agriculture Auditorium, Udaipur, Rajasthan.

Near 350 parent delegates representing their association form all over India participated in the two day event. It was inaugurated by the Home Minister of Rajasthan State Mr. Gulab Chand Kataria. The other dignitaries who attended the inaugural function include Local MP Mr. PArjunlal Meena, & MLA Mr. Phool Chand Meena, Mayor of Udaipur, Sri. Chandar Singh Kothari, and Dr. Parminder Beshera, Vice Chancellor of Rana Pratap Agricultural University besides other Parivaar Leaders. The self advocates in large number also participated in the NPM.

DECEMBER

§  Meeting with Shri Thaawar Chand Gehlot, Hon. Union Minister.

Parivaar President Dr V K Gautam long with Cdr. Bijur, Mrs. Ranoo Banerjee had a meeting with Union Minister of Social Justice & Empowerment, Government of India and Jt. Secretary & CEO of National Trust on important issues including passing of the RPD Bill pending in the Parliament.  This meeting provided an opportunity for Parivaar leadership to maintain direct contact with the Ministry.

Parivaar has been actively taking up issues of importance for PwDs in India with the Ministry of Social Justice & Empowerment. The issues that have been addressed are the Appointment of Chairperson to National Trust, Chief Commissioner for Persons with Disabilities and chairperson of Rehabilitation of India. On the issue of passing of the Rights of Persons with Disabilities Bill 2014, several representations have been made. 

§  Parents Association of Persons with Disability of Autism Mental Retardation Cerebral Palsy and Multiple Disabilities PAAMRC – KRISHNAGIRI DISTRICT based in Hosur is the only parents’ association in Tamilnadu involved in the implementation of World Bank assisted PUDU VAAZHUVU PROJECT of the state government of Tamilnadu. It has assisted a large number of PwDs and Families with intellectual disabilities in the villages to access rural based livelihood options. Please find attached a report on the success story of PAAMRC, HOSUR, TAMILNADU.

 DECEMBER 2014

 

The first National Executive Committee Meeting of SELF ADVOCATES FORUM OF INDIA was held on

December 27-28, 2014 at ANUGRAHA CHARITABLE TRUST, a Home for persons with Intellectual and

Developmental Disabilities and Senior Citizens located at Pachakshipuram, on Hosur- Denkanikottai Road,

Tamil Nadu. The elected Executive Council memebrs of SAFI from Kerala, Karnataka, Maharashtra, Odisha

and Tamil Nadu along with special invitess from Andhra Pradesh and West Bengal attended the two day

meeting.  In addition, Parivaar General Secretary, Director, P & D, President of Karnataka State Parivaar

Federation, Treasurer were invited to facilitate the meeting. SAFI executive made several decisions to improve

the image and spread of SAFI and also the functional aspect of SAFI.

 

 

NOVEMBER 2014

 

PARIVAAR CC, EX AND AGA AT RANCHI

TheCoreCommitteeMeeting of Parivaar was held on 20thNovember, 2014atDeepshikha, AraGate, Ranchi.

Parivaar Core Committee meeting, The Executive Committee Meeting of Parivaar was held on the 20

th November in the afternoon. 30-35 EC member attended the meeting Executive Committee metting.

The Annual General Assembly of Parivaar held at Deepshikha Auditorium, Ara Gate, Ranchi on 21st

November, 2014. Around 150 EC members and Parivaar delegates attended the meeting. Mrs. Sudha Lhila,

Chairperson of Deepshikha welcomed the delegates at the beginning ofthe AGM. 

 

The 22nd National Parent Meet 2014 was conducted successfully by Deepshikha Institute for Child

Development and Mental Health in collaboration with MITRA, PARIVAAR, NIMH and University Department of Psychology,

Ranchi University, on 22 nd and 23rd November 2014. The theme was ‘Moving forward with the rights of persons with

intellectual and developmental disabilities’. About 500 delegates attended the Programme from all States of India.

The Programme was also attended by self-advocates (more than 100), research scholars, NGO representatives, and

parents of individuals with intellectual and developmental disabilities. Dr. D. K. Menon, Founder Director NIMH came

to participate in the Programme from United Kingdom. 

The following dignitaries graced the inaugural function.

1. Sri Prasanna Kumar Pincha, Chief Commissioner of Persons with Disabilities & Chairperson, National Trust, New Delhi

2. Mrs. Poonam Natrajan, Ex-Chairperson, National Trust, New Delhi

3. Dr. Rajiuddin, Pro Vice Chancellor, Ranchi University, Ranchi

4. Dr. Mira Jaiswal, HOD, Dept. of Psychology, Ranchi University

5. Sri D. K. Menon, Clinical psychologist & Founder Director, NIMH, Secunderabad

6. Lt. Col(Retd) Dr. V. K. Gautam, President, Parivaar

7. Sri. Dashrath Choudhary, Regional Incharge / Lecturer, NIMH Regional Centre, Kolkata

8. Sri Ajin Sen, Ex- President, Parivaar

9. Mr. Philip Simon, General Secretary,Parivaar

10. Mrs. Sudha Lhila, Chairperson,22nd NPM,Ranchi

11. Mr. Sanjay Vishwakarma, Organizing Secretary

12. Mr. Pramod Kumar, Organizing Secretary

13. Mr. Self Advocates: Ms. Mahalakshmi, President, SAFI

14. Mr. G. Parthiban, Secretary, SAFI

 

MAVJAT, Parents Association, Surat, Gujarat was awareded the Dr. Reeta Peshawaria & Smt. Premlata

Peshawaria National Award at the inaugural session. 

 

Eminent persons from Ranchi including Mrs. Aradhana Pattnaik, IAS, Secretary, Human Resource

Development Department, Dr. S. Haque Nizamie, Professor of Excellence and Former Director CIP, Ranchi,

Dr. Amool Ranjan Singh, Director RINPAS, Ranchi, Professor Raziuddin, Pro-VC, Ranchi University, Dr.

Meera Jaiswal, HOD, PG Department of Psychology, Ranchi University, Dr. Krishna Kumar, Paediatrician etc.

were present in different sessions.

Dr. Varun S. Mehta, Senior Resident, Central Institute of Psychiatry, Ranchi, talked about Problems of

Adolescence of Persons with Intellectual and Developm ental Disabilities (IDDs). Commandant S. N. Bijur, EC

Member, PARIVAAR, talked about rights of Persons with Intellectual and Developm ental Disabilities.

Mr. Anil U Joshi, Technical Advisor, PARIVAAR talked about Need for Building grassroot Parents’ Network.

Mr. Philip Simon, General Secretary, PARIVAAR, Kerala, informed about aim of the National Meet and also the

need of Parent Network.

Lt. Col. Dr. V.K.Gautam, President, PARIVAAR, Ms. Mahalakshmi & Mr. Partibhan, National President &

Secretary of SAFI, Mr. Pranay, National Awardee of SAFI spoke on Self Advocacy.

M rs. U ma Sengupta spoke on the n e e d of e arly intervention to prevent and minimize disability.

D r . Bhangu spokeon prevocational skills

 

M r. V ijay Kant, COM, Parivaar spoke on various avenues related to Job. 

M rs . Aradhana Pattnaik , IA S , Secretary o f  Department of  Human Resource Development, Gov t. of 

Jharkhand chairded the session.

Dr. Alka Nizamie spoke on  ‘The Role of parents in ensuring rights of persons with IDDs’.

 

 

OCTOBER 2014

AFID CONFERENCE

The 21st Asian Federation on Intellectual Disabilities Conference took place on October 7-11, 2013 at India Habitat Centre, New Delhi.  This for the second time that this important conference took place in India when professionals, parents, member associations of AFID come together to discuss issues in the area of intellectual and developmental disabilities in the Asian Region . Mrs. Pramila Balasundaram a well known professional and service provider (SAMADHAN) in Delhi took the responsibility of organizing the conference. Nearly 400 delegates from Asian countries congregated at Delhi. The Conference was inaugurated by your girl with intellectual disabilities-a departure from the age old practice of inviting government representative or VIPs in the country.  This itself speaks for the empowerment of persons with disabilities. We were very happy that Mr. Klaus Lachwitz , President, Inclusion International  was invited by the organizers to addressed the delegates on “the challenges of UNCRPD for persons with intellectual and developmental disabilities.  Parivaar had sent Mr. Ajin Kumar Sen, President, Mr. Anil Joshi, Technical Advisor, Mrs. Iona Kundu, EC Member and Mr. Vijay Kant, COM to participate in the conference. Parivaar gratefully acknowledges the financial support extended by National Trust and CBM for sponsoring the delegates to attend this conference. 

 

 

SEPTEMBER 2014

Engage Disability: Initiatives for inclusion of PwD

This conference took place on September 25-27, 2014 at the Crown Plaza Hotel, Rohini, New Delhi. It brought

together nearly 450 Church leaders, Disability NGO Workers, persons with disabilities, families, health

professionals, educators and business leaders from all over India. Mr. Vijay Kant was sponsored by CBM to

attend this conference at Delhi. The focus was on:

±        Endeavours to be undertaken to make Inclusion efforts appropriate, acceptable and accountable.

±        Convene a strategic advisory committee of the key leaders of this movement  that meets virtually every 3 months.

±        Establish regional networks and groups that will meet every 6 months to promote disability inclusion in the Christian churches, programs and community. 

±        Organise regional gatherings and networks, to engage local churches and Christian leaders in these events

 

 

TELECONFFERENCE WITH UK PARLIAMENT COMMITTEE

At the initiative of CBM SARO, Bangalore, Mr. Joel Monteiro, A SAFI member of Thane Chapter was invited to be interviewed on a teleconference with Representatives of UK Parliament International Development Committee Inquiry on disability to understand situation of PwIDDs in India. He represented Self advocates Forum of India. This was the first time SAFI leader aired their views on their life in India.

August 2014: 

GLOBAL CAMPAIGN ON EDUCATION- the inclusion of persons with disabilities in the mainstream education. Mr. Vijay Kant. Mr. G. Parthian, National Secretary of SAFI was invited to a program in Delhi. Subsequently, CBM had organized a regional consultation at its office in Bangalore. As a result of these efforts CBM has launched “INCLUDE VIDYA” campaign was launched by cam with the support of the partners. Throughout the country CBM is organizing such a mass awareness event and the one in Bangalore is scheduled to take place on Nov. 26, 2014 at Bangalore and 5 other districts. The Karnataka State Parivaar Federation is an active partner.

 

MAHASANGAMAM

Organized by

STATE ASSOCIATION FOR COORDINATING REHABILITATION AND EMPOWERMENT OF DEVELOPMENTALLY DISABLED (SACREDD)

(A Joint Action Committee of Parivaar Kerala, NGOs, Professionals in the field of Intellectual Disabilities)

The second Mahasangamam was organized by SACREDD – a joint action group of all those associated with intellectual and developmental disabilities in Kerala. Mahasangamam (means Grand Coming together or grand confluence) brought together over 12,000 parents, PwIDDS, Professionals and NGOs from all the districts of Kerala face to face with political leadership of the State on August 10, 2014 at the City Corporation’s Putharikandam Maidanam, Thiruvananthapuram, Kerala. The gathering was inagurated by the Hon’ble Chief Minister Mr. Oommen Chandy in a meeting presided over by Hon’ble Minister for Health Mr. Siva Kumar and  Mr. V N Sudheeran, President of KPCC, delivered the keynote address. Ms. Padmini Thomas, President, Sports Council, Kerala, Mr. C. P John, Member State Planning Board, Mr. Vijay Kant, COM, Parivaar, Msgr. Rev Dr. Mani Puthiyidom, Vicar General, Changanacherry Archdiocese, and many other dignitaries representing various political and Social Organizations were present. Rev. Fr. Roy Kannanchira of Deepika, Kottayam, Mr. Philip Simon, General Secretary of Parivaar and Ms. Susheela Kuriachan, Head of an NGO were the main Conveners of the Mahasangamam. Mr. P B George, representing Parivaar Kerala and Fr. Roy Vadekel,  representing Professionals and NGOs read out the agenda of the conference that was presented to the Chief Minister.

Dr. M.K. Jayaraj, Director, State Institute for the Mentally challenged and one man commission appointed by the State Government, Mr. Philip Simon, General Secretary, Parivaar and Fr. Roy Vadakel were honored by the Chief Minister for their outstanding service to PwIDDs in the State of Kerala.

The Chief Minister promised to bring-in Grant–in-Aid to all the Special Schools in a phased manner. Dr. Jayaraj Commission Report is being actively considered by the government. Representatives of Parents and professionals will be invited shortly to participate in a meeting to be convened by the Chief Minister and all other nodal Departmental Ministers and Secretaries to decide on the Commission’s Report.  The Panchayat Raj Institutions will be strengthened to provide services to the disabled at the grass-root level.

The event was extensively covered by the state electronic and print media.

Kerala is the only State where the advocacy for and on behalf of people with intellectual and developmental disabilities have reached the political level. This example can be replicated in other States of India for effective political advocacy.   Congratulations to SACREDD! (SEE GALLERY FOR PHOTOS)

CBM Consultation on RPD Bill

 

On 12th and 13th August 2014, CBM, Bangalore, in collaboration with The National Law School India University (NLSIU), will be organizing the “Consultation meet to develop CBM’s position paper on pending bill on rights of persons with disability-2014 at Rajya Sabha”. The two-day workshop intends to bring together legal experts, CBM Partners and DPO members who work in the 

field of Disability to deliberate on the bill. The Rights of Persons with Disabilities Bill, 2014 (2014 Bill) was introduced in the Rajya Sabha on February 7, 2014 by the then Minister of Social Justice and Empowerment. The 2014 Bill seeks to have the National legislation comply with the standards laid down by the United Nations Convention for the Rights of Persons with Disabilities (UNCRPD) as India ratified the UN Convention on 1st October 2007. The passing of this Bill will repeal the Persons with Disabilities (Equal Opportunities Protection of Rights and Full Participation) Act, 1995. While the intentions of the Bill are laudable, it has scope for improvement.  See Gallery for photos

 

July 2014: 

Parivaar participated in the National level consultation on RPD Bill organized by All India Disability Alliance at Delhi.

Memorandum: Submitted to Prime Minister, Minister for Social Justice & Empowerment, Loksabha Speaker urging them to enact the Rights of Persons with Disabilities Bill.

June 2014:

MOTIVATION PROGRAMME TO PROVIDE EMPLOYMENT OPPURTUNITY TO MENTALLY

RETARDED SPECIAL PERSONS:

26/06/2014 ‘ Sirakugal ’ the Special Children Parents’ Association -Tiruchirapalli  in association with the NIPEMED the National institute for persons with multiple disabilities Chennai organized a programme for the benefit of parents with mentally intellectual persons at Sirakugal Training centre, orbit campus Tiruchirapalli. The programme is aimed to impart motivation and awareness to the special parents to keep engaged their adult mentally retarded persons who are being dropped out from special schools. One such programme was carried out with the support of the NIEPMD the National Institute for Empowerment of Person’s with Multiple Disabilities, Department of Disability Affairs ( Ministry of Social Justice and Empowerment ) Government of India. With their help the special adult children in Trichy got the training for the last six months in areca nut plates manufacturing. By this programmes 32 persons were trained at the Sirakugal training center and certificates of training were used to them by the project coordinator by Shri Gunasekaran NNIPMED Chennai. (See Gallery for photos)

May 2014: NATIONAL COALITION FOR EDUCATION (NCE) a member of GLOBAL CAMPAIGN FOR EDUCATION (GCE) organizes GLOBAL ACTION WEEK (GAW) in the last week of May 2014. This year the theme was ‘EQUAL RIGHT, EQUAL OPPORTUNITY: Inclusive Education for children with Disability ‘.

The following organizations joined hands under the aegis of NCE Civil Society Organizations, Social Workers, RTE Forum, Teachers Unions (All India Primary & Secondary Teachers Federations and All India Christian Association of Higher Education, This was sponsored by UNESCO, UNICEF, CARE, CBM, ACTIONAID and WORLDVISION.

We are grateful to CBM for sponsoring Mr. Parthiban, National Secretary, SAFI and Mr. Vijay Kant to participate on May 24th, at the NCE conference, Delhi. Mr. Parthiban made a presentation on the expectations of SAFI which was appreciated by all.  There were children from Actionaid supported schools in Delhi who also made pointed reference to inadequacies in the mainstreamed education systems.

April 2014:

SELF ADVOCACY AT THANE:

Saturday 12th April, 2014  Jagruti Palak Sanstha and Snehalaya, Thane organized a Refreshers Course on Self Advocacy.  This was supported by Parivaar, NCPO & Parivaar Sahyadri and Sponsored by Inner wheel Club of Thane North End.

Session started at around 11.30 am Mrs. Rekha Grace took over the session.  Total Mentors and SAs were  50.  This time we had 8 new mentors and 15 new SAs. 

The two SAs who had been part of the Delhi SAs tour shared their experience.  SA Joel Monteiro also shared his  experience of his Bangluru visit on invitation of  Mr. Vijay Kant,  COM,  Parivaar – NCPO and CBM SARO, Bangalore.  He participated ina teleconference when two UK Parliamentarians representing UK Parliament International Development Committee  interviewd him on the status of people with intellectual disabilities in India   

Mrs. Charu Shah, the Master Trainer also attended the session for next half of the day.  She counselled the SAs present on their rights, and also updated the audience on Self Advocacy,etc.

Jagruti Palak Sanstha and Snehalaya coordinated and shared the responsibility and Jagruti got a sponsor to bear the expenses of  Sound system, lunch, tea, etc.  Both Jagruti and Snehalaya thank the Master Trainers Mrs. Charu Shah and Mrs. Rekha Grace for their spontaneous gestures to be present and to grace the session.

 

Session went on till 4 pm and was successful.   Phots in the gallery.

A NEW SAFI CHAPTER IN CHENNAI:

Mr. Parthiban, National Secretary of SAFI took the initiative to organize a SAFI chapter in Chennai at the Spastics Society of Tamilnadu, Ayanavaram, Chennai.

 Mr.Ravikumar and Mr.Ravichandran from North Chennai Mental Retardation Association also participated in the meeting. He spoke as most of the schools are rejecting the children’s above 18, so they need admission in the same schools for further years. They also spoke about the issue that they have to vacate the house repeatedly for having a special child so he requested to provide residence like housing board quarters for people having special children.

 Most of the parents are unable to access to Niramaya schemes on online process. They also had a query that one of the family members of the special child should be given employment opportunities for the family’s upliftment. Mohammed Eza one of the parent told that the measurement for aids and appliances are taken and the products are given after 2years which is not fitting for the PWD’s.

 At the conclusion of the meeting,  we appealed to parents to let many members to join in the group and make it big success. The meeting ended with a Vote of Thanks by Mr.Parthiban and Nat The Spastics Society of Tamilnadu - 13,Trust Square St,Ramalingapuram- Ayanavaram Branch.ational Anthem.

Parthiban

National Secretary, SAFI

Photos in Gallery

 MARCH 2014

Felicitation of Pranay Burde, the 2014 WDSD award winner - India

Parivaar- National Confederation of Parents Organizations felicitated Pranay Burde on winning the 2014 WDSD Award

Parivaar- National Confederation of Parents Organizations (NCPO) and Parivaar Sahyadri, the Apex Council of Parents of Persons with Intellectual & Developmental Disabilities (PwIDDs) in Maharashtra felicitated Pranay Burde on his winning the 2014 World Down Syndrome Day Award, awarded by Down Syndrome International. Dr.H.T.Dholakia, Ex-President of Parivaar- NCPO, Mr.Ramesh Shah, President of Parivaar Sahyadri, Mr.Satish Dhurat, EC Member of Parivaar Sahyadri spoke in praise of achievement of Pranay on the occasion. The ceremony was graced by Mr.Dashrath Parab, treasurer of Parivaar Sahyadri and EC member of Parivaar- NCPO, Mr.Redkar, Joint Secretary of Parivaar Sahyadri, Mr.Praveen Chhajed, EC member of Parivaar Sahyadri, Mr.Tushar Shah, Self Advocate EC member of Parivaae Sahyadri, Mr.Mulani of Jagruti Parents Association, Thane, Mr.A.M.Solanki, President, Parents of Down Syndrome, Mumbai and Ms.Sharon Fernandes a special educator besides 150 persons with Down syndrome and other form of disabilities, their parents and teachers. The celebration was followed by dance and music by special kids. Pranay Burde thanked all office bearers of Parivaar Sahyadri and Parivaar-NCPO, parents and teachers by presenting them gift hampers.Parivaar- National Confederation of Parents Organizations (NCPO) and Parivaar Sahyadri, the Apex Council of Parents of Persons with Intellectual & Developmental Disabilities (PwIDDs) in Maharashtra felicitated Pranay Burde on his winning the 2014 World Down Syndrome Day Award, awarded by Down Syndrome International.

Dr.H.T.Dholakia, Ex-President of Parivaar- NCPO, Mr.Ramesh Shah, President of Parivaar Sahyadri, Mr.Satish Dhurat, EC Member of Parivaar Sahyadri spoke in praise of achievement of Pranay on the occasion. The ceremony was graced by Mr.Dashrath Parab, treasurer of Parivaar Sahyadri and EC member of Parivaar- NCPO, Mr.Redkar, Joint Secretary of Parivaar Sahyadri, Mr.Praveen Chhajed, EC member of Parivaar Sahyadri, Mr.Tushar Shah, Self Advocate EC member of Parivaae Sahyadri, Mr.Mulani of Jagruti Parents Association, Thane, Mr.A.M.Solanki, President, Parents of Down Syndrome, Mumbai and Ms.Sharon Fernandes a special educator besides 150 persons with Down syndrome and other form of disabilities, their parents and teachers. The celebration was followed by dance and music by special kids. Pranay Burde thanked all office bearers of Parivaar Sahyadri and Parivaar-NCPO, parents and teachers by presenting them gift hampers.

FEBRUARY 2014:

PARIVAAR STRATEGIC PLANNING MEETING:

Parivaar (National Confederation of Parents’ Organization) organized a strategic planning meeting on 22 & 23rd Feb, 2014, with financial support from CBM, SARO, Bangalore. All the EC members of Parivaar and Presidents of State Federations (AP, Karnataka, Kerala, Maharashtra, Odisha, West Bengal, Gujarat, and Tamil Nadu) were invited for this two day meeting. Forty five leaders from across the country and self advocates finally participated.

 

The Outcome:

The developmental needs of PwIDDs and their families have not been fully addressed for various reasons.  Some of them have not been noticed by the State and some others not recognized as priorities by the Government machinery, despite Parivaar’s continuous and untiring endeavors to create awareness, sensitization and organize advocacy programs by seeking funds through funding agencies and own resources as well.  Parivaar could secure some positive results in a few of its attempts, but largely, many issues have not been addressed. It is a long and arduous journey to ensure rights, inclusion and empowerment of PwIDDs and their families in the community.  Parivaar has to redouble its efforts based on long range plans to find solutions to the future developmental needs that are changing continuously.

 

Long Range Plan (LRP) ranging up to 20 years and its effective implementation will enable Parivaar to overcome the inherent difficulties of the organization in a developing country like India.  These difficulties are inadequate resources, organizational capability deficit, adverse environment. Parivaar’s growth and building alliances and affiliations are dependent on overcoming these difficulties.  A significant outcome expected of such LRP is ensuring organizational capacity building in its strategy and structure.

 

Strategic Planning is, therefore, the hallmark of LRP with Short Term Annual Plans. It also requires periodic reviews and evaluate its objectives, policies, programs and organization structure, processes to meet the challenges of changing scenario.

 

The planning process covered the delivery, development, discovery, documentation and dissemination of programmes in various functional and support areas related to the rights, inclusion and empowerment of the PwIDDs and families

JANUARY 2014

AN APPEAL TO SMT. SONIA GANDHI ON RPD BILL:

January 16, 2014

Dear Friends,

Our worst fears have come true. Once again the passing or even introducing the RPD Bill in the Winter session of Parliament has eluded us.  Promises were made and the Hon’ble Minister for Social Justice Ms. Kumari Selja had announced at Chandigarh on 11th November 2013 that the Government will pass the Bill in the Winter session of Parliament. 

However, the Parliament session came to an abrupt end after passing the Lok Pal Bill on 18th December 2013 and the promise on passing the RPD Bill remained unfulfilled.

A pal of gloom and seething anger enveloped the entire disability sector.  There was flood of protests all over the country.  Social media was full of statements expressing these feelings of disappointment and demanding passing of the Bill in the forthcoming Vote on Account session of the present Parliament which is likely to take place in mid Feb. 2014.

No doubt no one in the entire disability sector is opposed to such a demand.  Because no one wants an atmosphere of uncertainly to prevail as far as passing of the RPD Bill is concerned.  And therefore we have to consider all pros and cons before this demand is fulfilled.

v  First of all this would be the last chance for the present UPA – II Government which had introduced the process of signing and ratifying the United Nations Convention on the Rights for Persons with Disabilities [UNCRPD], to fulfill its obligation of harmonizing all disability legislations with the UN Convention by passing the new disability law.

v  This process has been going on for more than last six years after the UNCRPD was ratified by India.  It has gone through various stages so far.

v  In September 2012, the MSJE came out with its own draft with some major changes and put it in public domain inviting comments and suggestions by State Governments and the disability sector.

v  It was at the end of 2013 the MSJE submitted the revised draft bill to the Union Cabinet which approved the bill on December 12, 2013 when Parliament was already in session for a week.

v  It was then expected that the Winter session will continue till December 20, atleast.  But as it happened it abruptly adjourned sine die on 18th December 2013.

Now with this background let us examine a few relevant points which are very crucial before the RPD Bill is taken up in the Vote on Account session and passed.

1)      First of all why so much of precious time was wasted to complete the above process and get the bill approved by the Union Cabinet at the last minute?

2)      Why some of the basic changes were introduced in the committee’s draft which has diluted to a great extent the monitoring procedure of implementation of various provisions of the new RPD Bill?  

       3)      Why some of the important provisions concerning women and children with disabilities were deleted from the draft?

       We have also to consider a few other important points and ask the Government to take corrective measures before the bill is introduced and passed by the Parliament.

1)      It is understood that the MSJE prepared a revised clause by clause draft of the RPD bill before it was submitted to the Union Cabinet for its approval. It is also understood that many of the provision of the earlier draft has been further diluted.

For instance, in the September 2012 draft the Ministry had replaced the most important provision of creation of Disability Rights Authority with National Commission on Disability.  While the DRA was provided with wide powers to oversee the implementation of all provisions of the proposed RPD Act and take stringent action wherever it was violated, the Commission is stripped of these powers and is made a toothless body.

 

It is now understood that the National Commission will not be only a toothless body but less representative as it will have only three members including the Chairperson with only one person with disability. Even the criteria of heading such a National Commission by a person from that category has been ignored in this case.

2)      Has the MSJE once again revised its own draft put in public domain in September 2012?  If so, why was the revised draft (as submitted to the Union Cabinet) not put for scrutiny and comments from the disability sector and other concerned authorities?

3)      Has the revised draft or the September 2012 draft has taken care of scores of suggestions and comments that had come from the disability sector?  Because we feel that many of these suggestions are relevant and should be incorporated in the revised draft.

       With the foregoing, we should demand the following from the Government before the bill is introduced in the Parliament.

   n  Put the draft RPD Bill as approved by the Union Cabinet on the MSJE website immediately in both in PDF and accessible format. 

   n  Include all important relevant suggestions emanating from the Disability sector in the Bill.

   n  The bill should be referred to the Joint Select Committee of the Parliament after its introduction and before it is taken up for discussion. 

 

   n  There should be a full-fledged discussion on the bill before it is passed.

       I am sure that those of us who take this stand will be immediately accused of causing further delay by all those who are in a great hurry to see that the RPD bill is passed immediately.  But just imagine if the draft bill as prepared by the MSJE and approved by the Union Cabinet is passed without removing the lacunae which we have pointed out in the foregoing and without following the procedure as suggested by us above, how much harm will be caused to the rights of the PwDs who would like them to be fully guaranteed and ensured by the new disability legislation.

      Let t us remember the history of the passing of the PwD Act 1995.  Even after more than one and half decade of its passing it was not amended despite persistent demand.   So let us not repeat the history.

     As an erstwhile member of the drafting committee, I appeal to you to consider the foregoing and sign the appeal which is addressed to UPA Chairperson Smt. Sonia Gandhi, Prime Minister Dr. Manmohan Singh and all leaders of the Opposition Parties.  We have to hurry and send this appeal.  Please sign and send it back to us.

 Yours sincerely,

(J P GADKARI)

Erstwhile New Disability Law

 

Drafting committee Member

DECEMBER 2013:

Parivaar members at the state level in association with the state governments organized and participated in the celebration of ‘World Day of the Disabled in the country. Many associations organized local programs in commemoration of the Day.

NOVEMBER 2013

Parivaar delegates attended the two day National conference on Intellectual Disability at Vigyan Bhavan organized  by the Ministry of Social Justice and Empowerment, Government of India. Parivaar has made several recommendations to the ministry to improve the services to PwIDDs in the country.

 

BADTHE KADAM- NATIONAL TRUST

Parivaar member Associations across the country were actively involved in conducting the BADTHE KADAM awareness rallies organized by National Trust to bring awareness about people with intellectual and developmental disabilities and National Trust programs. Thousands of people were sensitized and the political leaders and state administration of each state were invited to participate in this program.

 

October 2013:

SAFI has arrived on the National Scene!

History was made on October 4-5th 2013 when 155 self advocates, mentors and supporters came to Delhi for the first time to have a National Convention. It was a dream come true for self advocates and Parivaar.

The event was graced by Mr. Prasanna Kumar Pincha, Chief Commissioner for Persons with Disabilities, Government of India who inaugurated the two day First National Convention of Self Advocates Forum of India  (SAFI) in the presence of other dignitaries- Mrs. Poonam Natarajan, Chairperson, National Trust, Dr. Sara Varughese, Regional Director, CBM South Asia Regional Office, Bangalore, Mr. Lachwitz Klaus, President Inclusion International, Germany and Mr. Ajin K. Sen, President, Parivaar.

The National Convention of Self Advocates was a joint initiative of Parivaar, National Trust, Ministry of Social justice and Empowerment, Government of india and CBM South Asia Regional office, Bangalore.

SAFI delegates came from the States of Andhra Pradesh, Bihar, Chhattisgarh, Delhi, Gujarat, Himachal Pradesh, Karnataka, Kerala, Maharashtra, Odisha, and Tamil Nadu. Some of them had to travel nearly three days by Train. The ambience was electrifying as each delegation spoke in Malayalam, Tamil, Hindi, Telugu, Kannada Marathi and English. The mentors translated the proceedings in the local language of the delegates.  Generally in India, conferences are usually in English and Hindi. However this is for the first time the conference took place using many languages for discussion and presentations.

The two day event marked with Camaraderie among participants and all other supporters. State-wise group discussion was held on various issues: ranging from their personal life experiences both positive and negative which they experienced in their day-to-day lives (at home, at the market place, work place, during travel, at social places / functions, education, government Policy and support. Then the group leaders presented the summary of their discussion.

The most interesting part of the convention was the nomination of candidates for the post of president, Secretary, Treasurer and the National Executive Council of SAFI.  Several candidates offered themselves for different posts. As in other general election process in the country; there was canvassing, appointment of election officers, observers, Ballot paper with the photos of candidates and polling booths were created for orderly conduct of the election. For the first time a National SAFI office-bearers were elected and they held their first executive council meeting at the same venue and decided to meet again in January 2014 at Bangalore. 

Mr. Avanish Awasthi, IAS, Joint Secretary, Department of Disability Affairs, Ministry of Social justice & Empowerment, Government of India, Mr. A K Lal, Chief Executive Officer, National Trust were present during the two day convention and assured SAFI all support for the promotion of SAFI to the entire country.

Parivaar – the National Confederation of Parents’ Organizations was behind the success of SAFI in India. Parivaar leaders across many states took the initiative to form self advocacy groups in their state. Parivaar provided financial support and provided them with a Mentors Training Manual which was translated into many local languages to facilitate formation of self advocacy groups. This could not have been achieved without the support of our funder CBM South Asia Regional Office, Bangalore. National trust has come forward to help expand the program to the entire country.  Self advocacy program needs to be organized regularly for them to build their skills and advance their advocacy strategy.

Recently, SAFI Karnataka took part in the candle light vigil to demand the passing of the Rights of persons with Disabilities Bill 2013 at the Mahatma Gandhi Statue, MG Road, Bangalore. (Photos are attached separately)

ASIAN FEDERATION ON INTELLECTUAL DISABILITY CONFERENCE AT Habitat CENTRE, New Delhi(AFI).

Mr. Ajin Sen, Mrs. Iona Kundu, Mr. Vijay Kant and Mr. Anil Joshi were the delegates to the Asian Federation on Intellectual Disability (AFI) conference held at Habitat Centre, New Delhi on September 7-11, 2013. Nearly 400 delegates from Asian countries including India attended the conference. Parivaar used the opportunity to contact delegates from SAARC countries to form a Sub regional group of Inclusion International.

SEPTEMBER 2013

A REPORT ON KERALA ROUND TABLE CONFERENCE-2013

Kerala Round Table Conference-2013 (KRTC) was conducted on 24th September,2013 at Mascot Hotel, Thiruvananthapuram. The main theme of the Conference was “MAKING RIGHTS REAL”. The conference was hosted by Parivaar Kerala and Parivaar NCPO, and was sponsored by Australian Aid and CBM.

  Mr. Ajinkumar Sen in his presidential address emphasized the need for collective dialogue between the Government and the Parents’ Organizations to work out a sustainable and meaningful programme for the empowerment and rehabilitation of Persons with Intellectual and developmental Disabilities. He also stated that in spite of being one of the first countries to sign the UNCRPD; the Political leadership in India did not show the political will in bringing forward presenting the Draft Bill in the Parliament. He also expressed his gratitude to Government of Kerala for its concern for the disabled. He also cited the examples of Vikalanga Gramasabha, Special Neighborhood Groups for Intellectually Disabled  etc., being implemented in the State of Kerala are good practices which can be followed by other states.

Mr. K.M. Chandrasekhar, Kerala State Planning Board Vice Chairman in his inaugural address  expressed his happiness for the professional manner in which  Parivaar Kerala conducted this Round Table Conference. He said the State Government is fully aware of the problems faced by the Disabled population in Kerala especially persons with Intellectual and Developmental Disabilities. He cited the example of Dr. M.K. Jayaraj Director of State institute for the Mentally Challenged, a one man Commission appointed by the State Government to study the problems and suggest solutions to solve the problems faced by PwIDDs in Kerala. He also said that Parivaar Kerala is  invited to take part in the planning process of the State Planning Board. He also invited concrete proposals from the Parents Organization for the empowerment and rehabilitation of PwIDDs so that it can be included in the next Annual State Plan.

Mr. Vijay Kant, COM, Parivaar NCPO gave an over view of the Right Based approach taken up by Parivaar to protect and uphold the constitutional as well as the human rights of PwIDDs all over India. He also said that the Kerala Government is in the forefront in implementing imaginative programmes for the welfare of Persons with Intellectual Disabilities.

Adv. K.  Chandrika, Hon. Mayor, Thiruvananthapuram Corporation congratulated the organizers for conducting such a conference and  offered all the help for all the activities  being implemented by the parents organization. She also said that the proposal to start an  “ETC Navi Mumbai” model Rehabilitation and Training Centre in Thiruvanathapuram Corporation will be presented in the next Corporation Meeting.

Dr. T.P. Ashraf, Executive Director, Kerala State Social Security Mission, Ms. Manju Bharati, COO, Kudumbasree Mission,  Mr. Kalidasan, Consultant, Kudumbasree Mission,  Prof. Dr. N. Ahmed  Pillai, State Disability Commissioner,  Dr.  Reghunath, Professor and Head of the Department of Horticulture, Kerala Agricultural University, Dr.  Suneesh, School of Behavioral Science, Mahatma Gandhi University, Dr.  M.K. Jayraj, Dr. Beela, Centre for Disability Studies, Mr. Sateesh  Chandran  Nair, National Vocational Training Centre, Mr. N.Rajan, Deputy Director, Directorate of Public Instruction, Secretaries  of various Ministries like Social Justice, Local Self Government, Education, Health, Labour participated in the discussion. There were representatives of District Parents from 14 districts of Kerala, several professionals, NGO representatives. In all over 250 delegates participated in the roundtable conference.

A short Film produced by Parivaar Kerala based on Supported Decision Making Project and the views of Self Advocates and another short film produced by Kerala Agricultural University on Horticultural Therapy shown in the conference were highly appreciated by all the delegates.

There was a special session for Self Advocates in which the SAFI members who are gainfully employed and their mentors and parents expressed the confidence that if given adequate training and opportunity, PwIDDs can take up any job and be a contributing member of the family and society.

Mr. P.B.  George, President, Parivaar Kerala presided over the valedictory meeting. Mr. Benny Abraham, Secretary, Parivaar Kerala proposed a vote of thanks.

OUTCOME of KRTC-2013.

1.    Principal Secretary, Department of Social Justice called a meeting of all concerned to discuss about the formulation of Rules for PwD Act,1995, on 5th October,2013, in which five representatives from Parivaar kerala  were invited.

2.     State Disability Commissioner called a meeting of the State Executive of Parivaar Kerala  on 11th October,2013 to discuss the problems faced by the PwIDDs.

3.    Kerala State Social Security Mission called a meeting of the Office Bearers of Parivaar Kerala to discuss about certain proposals of Parivaar Kerala.

4.    Kudumbasree Mission held discussion with the State President and General Secretary to discuss about the proposal of starting supported decision making project at the local self government level.

5.     State Planning Board has invited us for a meeting to discuss about the proposals put forward by our National President Mr. Ajinkumar Sen in a private meeting with Vice Chairman  of the Planning Board

6.    Other departments like Health, Labour and Agriculture have asked us to give proposals.

7.    State Horticulture Mission in coordination with Centre for Disabilities Studies have agreed to the formation of Parent Support Group all over Kerala in which Horticulture projects will be implemented as a Therapy as well as  a means for income generation for PwIDDs.

August 2013

Chennai Roundtable Conference 2013:

The Chennai Roundtable conference was held ON August 8-9, 2013 at the National institute for the Empowerment of persons with Multiple Disabilities, (NIEPMD), under the Ministry of Social Justice & empowerment, Government of India at Muttukadu, Chennai. The conference was organized by PARIVAAR FEDERATION, TAMILNADU and supported by CBM, NIEPMD and MAITHREE. The conference was attended by more than 170 delegates representing the department of Differently Abled, Sarva Shiksha Abhiyan, Puduvalzhvu, education, leading NGOs, district representatives of parents associations and other eminent persons in the field.

 

The concept of roundtable conference was introduced by Parivaar in 2000 with an objective to bring together the representatives of parents’ associations, voluntary organizations providing services to the persons with intellectual and developmental disabilities (PwIDDs) and the government officials to discuss the problems faced by the families and find solutions for them.

As a result of 2003 Chennai roundtable the state government introduced many steps which immensely benefitted the PwIDDs. We are revisiting the status of PwIDDs in the state after 10 years.

The Conference was inaugurated by Minister for Social Welfare, Government of Tamilnadu, Mrs. Pa. Valarmathi, Principal Secretary & State Commissioner for persons with Disabilities, Mr. V K Jeyakodi IAS and Dr. Neeradha Chandramohan, Director, NIEPMD.

After the inauguration, The participants were divided into groups of 8 and discuss the programs/schemes such as Early Intervention, Residential care Homes cum vocational Centres, Maintenance Grant, SSA program, National Trust schemes, LLC activities etc. and arrived at certain recommendations and suggest ways to bridge the gaps.

Discussions on the schemes/programs focused on 1. How successfully and efficiently are these schemes carried to the beneficiaries at present? 2. What is the desired scenario? 3. How Parent groups (stake holder cum beneficiary) can be involved in the Policy-making process and in the implementation of the Schemes?

The aim is to form a tri-partite structure between the DWDAPs (DDROs) / SSA /LLCs (representing the Govt.), the NGOs (doing the services) and the Tamilnadu Parivaar (Awareness Creation, Helping in identification and Mobilizing of beneficiaries and playing the role of a catalyst and overseeing the results).

 

There were interactive sessions between Representatives of concerned state departments/agencies in the field of disabled Welfare with Members of Parivaar, NGO Representatives, LLC members for preparing a road map to improve the quality of life of persons with intellectual and developmental disabilities (PwIDDs) in the formation, implementation and reach of the various Welfare Schemes brought in by the Government. 

 

PARIVAAR NCPO EXECUTIVE COUNCIL MEETING: June 2013;

Parivaar conducted the Executive Council Meeting on June 15, 2013 at The Indian Social Institute, Benson Town, Bangalore. Nearly 35 executive council members from all over India attended the meeting.

 

WORKSHOP IN INCHEON STRATEGY: June 16, 2013 at ISI, Bangalore

Parivaar organized a one day workshop on Incheon Strategy –‘Making Rights Real’ for persons with disabilities on June 26, 2013 at Indian social institute, Benson Town, Bangalore.

The workshop was inaugurated by Mr. Prasanna Kumar Pincha, Chief Commissioner for Disabilities, Government of India. Mr. K V Rajanna, State Commissioner for Disabilities, Government of Karnataka delivered the presidential address. Mrs. Usha R. Patwari, Deputy Director, Department for the Empowerment of Persons with disabilities & Senior Citizens, Government of Karnataka graced the occasion.

Parivaar leaders from all over India, special invitees, government representatives, Add India, Asha for Autism. Spastic Society of Karnataka and other agencies in Bangalore numbering over 45 actively participated in the day long deliberations.

In his inaugural address Sri. P K Pincha lauded the efforts of Parivaar and said that it is the first such workshop conducted in the NGO sector that too a parents organization. Mr. Rajanna said that creating mere awareness about the Incheon strategy is not enough, we must find ways to implement it at the grass-root level.  Mr. J P Gadkari, Director, Projects & development, Parivaar gave an over view of Incheon Strategy tracing the history behind the developments  in the Asia-pacific region, leading to the launch of the Strategy for next decade for the disabiled (2013-2022) announced by ESCAP.  Mr. Vijay Kant made a presentation on each of the Incheon goals to facilitate the group discussion for developing an action plan to be adopted by Parivaar  for implementation.

Anna MacQuarrie, Human Rights Officer, and Ms. Natalia Angel, Visiting Scholar (Columbia) Inclusion International, from Canada enlightened the participants on global campaign on decision making and CRPD Article 12, The Right to Decide and Living and being included in the community (article 19, CRPD).  Mr. Jesuraj, Network & Alliance officer, CBM SARO, Bangalore spoke on inclusive development and Mr. Philip Simon on Gender Equity.

Major emphasis was given to three goals ( 1, 2,& 4)as it relates to empowerment of Persons with Disabilities (PwDs). The participants were divided into three groups each group discussing one goal and made their recommendation.

Action Plan:

Parivaar and its member Associations/ Federations have set the following Target to be achieved:

1.      Actively promote early identification and intervention.

Lead Agency:  “Universal Screening” scheme announced by the Government of India and implemented through Rural Health Mission. They will liaison with State & district administration to access the funds by the Ministry.

2.      To promote Self Help Groups among PwIDDs and their families at the grass-root level.

Lead Agency: Rural Development Ministry: Poverty Alleviation & Women Empowerment program. Form SHGs among Parents & PwIDDs and then link them with government agencies.

3.      Access the funds available at the Panchayats, Block Panchayats. Zilla Panchayats, and all Civic Bodiies. They have reservation of 3% funds for the welfare of PwDs.

4.      Make Voter ID and Aadhaar cards available to PwIDDs for all the members of the Association and others in the community.

5.      All the above programs are incorporated in the Incheon goals for persons with disabilities. It is necessary to liaison with State and District Department of Disabled Welfare/Social Welfare/ Women & Child Development Department- as may applicable in various states for popularizing Incheon Strategy. National Trust LLC may be approached for conducting the Workshop at District level.

6.      Promote Self advocacy among all parents’ associations:

Lead Agency: State Coordinators is SNAC of National Trust. They have been Trained and given responsibility to promote self advocacy at the state/local level. Promote it among NGOs that work for persons with intellectual disability.

The one-day workshop helped the stakeholders understand the import of the Incheon Strategy and how to popularize its goals and strategies for persons with Intellectual and developmental disabilities in various states of India. Parivaar leaders have been provided with a mandate to take the message forward in their own states and impress upon the governments, and its association members to take specific action as suggested above for ‘Making Rights Real’ for Persons with disabilities with a specific focus on persons with intellectual and developmental disabilities. This also requires that we take all the stakeholders along with us so that our advocacy becomes stronger and goals achievable. (See Gallery for Photos)

CBM PROJECT VISIT

Miss. Theresa from CBM Australia, Mr. jesuraj and ms. Anita from CBM SARO visited our office to review the progress of our project partnership on June 28, 2013.

 

MAY 2013

Cooperative society formed at Kasargod:

PARIVAAR - KERAL, KASARGOD DISTRICT is the first Parents association to register a Cooperative Society on the model of District Cooperative Bank exclusively for persons with intelelctual and developmental disabilities and their families. The objective is to provide self employment opportunities for PwIDDs and their families. Please find news clipping announcing the formation of the Cooperative Society in the gallery.

April

Parivaar participated in two important workshops organized by CBM  on March 6-8, 201. The first one was in 'QUALITY EDUCATION FOR INCLUSION'. This workshop familiarized the partners on the steps taken to include persons with disabilities in the mainstreamed education in India. It provided an opportunity for the partners to learn about the current practices, problems and also good prctices in inclusive education.  

The seond workshop on April 25- 26, 2013 on Financial Management of NPOs (Non profit Organizations) was very useful. Legal compliances and CBM requrements were discussed. It was well organized and the presentations were very useful for partners. (see photos in the Gallery.

March 2013

NATIONAL INSTITUTE FOR THE EMPOWERMENT OF PERSONS WITH MULTIPLE DISABILITIES, CHENNAIorganized a National conference on Independent Living of ASD at its campus on March 16, 2013. Parivaar presented a paper on Residential Options available for ASD.

March:

CBM SARO, Bangalore organized a three day workshop on 'Quality Education for Inclusion'. Parivaar was paticipated in the workshop. 

JANUARY 2013

The National Trust in Associiation with Parivaar organized a two day workshop for the State Nodal gaency Centres Coordinators at its office in Delhi On January 9-10, 2013. It was the first program jointly organized by National trust & Parivaar. The objective of the workshop is to help the SNAC Coordinators to create Self Advocacy Groupsfor persons with intellectual and developmental disabilities in their respective states.

A followup meeting  was held in the month of March 19-20, 2013 at BPA, Ahmedabad.

It was decided to introduce self advocacy training program for PwIDDs atleast among 5 NGOs in their respective states. A master level training for Mentors will be organized sometime in June 2013.

Self advocacy for PwIDDs was initiated by Parivaar in 2008 and since then state chapters have been created in 7 states. With support from National Trust we wish to expand the program throughout the country in 2013-14. Vijay Kant, COM, Parivaar

OCOBER 12, 2012

ORIENTATION ON SUPPORTED DECISION MAKING AT KASARAGOD, KERALA. DEPUTY COLLECTOR, PRESIDENT DISTRICT PANCHAYAT, MEMBERS OF PANCHAYATS, PARENTS PROFESSIONALS AND SELF ADVOCATES ATTENDED. MR. K V RAMACHANDRAN, MR. VIJAYAN, MR. PHILIP SIMON, MR.SANKARARAMAN AND MR. VIJAY KANT WERE THE RESOURCE PERSONS.

IT WAS HELD AT JAWAHAR NOVODAYA VIDYALAYA HALL. PRINT AND ELECTORONIC MEDIA GAVE WIDE PUBILICITY.

 OCTOBER 2, 2012:

LAUNCH OF SUPPORTED DECISION MAKING DEMONSTRATION PROJECT IN KERALA:

PARIVAAR launched the Supported Decision Making (SDM) demonstration project on the auspicious Gandhi Jayanti day of October 2, 2012 at The Renewal Centre, Ernakulam, Kerala. This project is being implemented by PARIVAAR-KERALA, the accredited state Federation of Parivaar. Mr. Hibi Eden, MLA, Ernakulam and Mr. Eldose Kunnappilly, President, Ernakulam District panchayat were the guests of Honor. Mr. J P Gadkari, Director, P & D, Parivaar, Mr. Vijay Kant, COM, Parivaar, Mr. K. Sankararaman represented parivaar. Mr. P B George, President, Mr. Philip Simon, Gen. Secretary, Parivaar Kerala made all the arrangement for the launch. Nearly 370 parents, self advocates, professionals, social workers, government officials participated in the program. Ernakulam and kasargode districts have been chosen for implementation of the one year project in Kerala.

This demnostration project is being undertaken by Parivaar with financial support from Disability Rights Fund, USA.

WHAT IS THIS PROJECT?

We cease to be fully human when our rights are denied or taken away. It is the ultimate loss of our dignity. We enjoy the right to express what we want, our desires, understandings and needs. This is normally respected by law and  normally respected by others. If this does not happen and we are denied the opportunity, it is the ultimate death of our personhood. We cease to exist as social persons.

A social paradigm shift is taking place after the adoption of UN Convention on the Rights of persons with Disabilities (UNCRPD) that respect for one’s rights to dignity and legal capacity. This must be reflected in law and practice in every country.

For us – in Parivaar, the status of people with intellectual and developmental disabilities have been at the heart of the issue of legal capacity. It has long been assumed that these people are of “unsound mind and would not be in a position to make informed decisions.” This is an outdated approach but still practiced and engrained in the beliefs of our society. A functional approach is recommended on the issue of legal capacity or the ability to make informed decisions by persons with intellectual and developmental disabilities with the assistance of a support group.

In the context of supported decision-making, that is to say, in the context of relations with others, we see that interdependence is a valid and meaningful way to make choices and decisions. In fact, as individuals, we often confer with others, especially when making important decisions and we find that decision-making is enhanced. It is our natural right to make decisions affecting our lives with the support, affection and assistance of family and friends of our own choosing. According to Schwartz, It is not enough to challenge guardianship as a model of decision-making. “We must also challenge the view of society and humankind that assumes some people are of lesser value and are incapable of making choices about their own live

This project on ‘Supported decision making’ refers to a process of developing a network of trusted people (family, siblings, friends and other immediate community members) to provide decision making assistance in a way that supports and maintains the legal capacity of persons with intellectual and developmental disabilities by replacing the guardianship provision under the National Trust Act of 1999.

 India signed and ratified the UNCRPD and with it comes the obligation of amending all the laws that are discriminatory to persons with disabilities. The process is on and a provision for ‘support’ has been recommended to be incorporated in the new disability law. However, there is a need for demonstrating how this model can be adopted and implemented in India. We are particularly interested in the Article 12 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) that recognizes legal capacity of all persons, regardless of their disability, and a right to support to exercise their legal capacity.

 At this juncture, the SDM is a progressive idea and therefore, PARIVAAR is undertaking this project to demonstrate how to put supported decision making into practice, and to develop recommendations for expanding these systems and approach to securing the full legal capacity of people with intellectual disabilities. The results of this project will be presented to the government for adoption.

 

 

SEPTEMBER 25-26, 2012

REGIONAL PARENTS' MEET was organized by . Parents repersenting the Northeastern states participated in the two day program. Mrs. Purnima Kayina of  Nagaland Parents' Association for the Disabled organized this two day program. Mr. Ajin Kumar Sen, President parivaar and Mr. Sribas Dhar, Vice President Parivaar North East, repesented Parivaar.

 

SEPTEMBER 8-9, 2012

REGIONAL PARENTS' MEET was organized by MAVJIT- Parents Association, Surat, Gujarat. Parents repersenting the states of Maharashtra and Gujarat participated in the two day program. Mr. J P Gadkari, DR R G Gokhale, Vice president, Parivaar West, repesented Parivaar.

 

 SEPTEMBER 5, 2012

NATIONAL TRUST 'KNOWLEDGE WORKSHOP'  was organized by National Trust on September 5, 2012 at Vishva Yuva Kendra, Chanakiyapuri, New Delhi. Parivaar was invited to make a presentation on the experience of the Demonstration projects undertaken by Parivaar on "Supported Decision Making" (SDM). Mr. J P Gadkari,Director, Projects and Development, Mr. Vijay Kant, Chief Operations Manager, Parivaar made a powerpoint prresentation. Mrs. Saswati Singh, Dehradun, Mrs. P R Shirke, Bhilai, Mrs. Anuradha Nandakumar, Mysore, Mrs. Shardamani Iyer, Delhi with SDM Volunteers shared their experiences. Mr. Ram Aiyappa a Self Advocate from Mysore spoke on his experiences and also his work experiences at Vinyas Innovative Technologies, Mysore where he works as Front Office Executive. (see photo Gallery)

RECOGNITION FOR CONTRIBUTION TO THE CAUSE OF PARENT MOVEMENT 

MR. J P GADKARI, Director, Parivaar  was felicitated for exemplary services in building a national network of parents' organizations and  active advocate for the enactment of National Trust Act, 1999. 

Prof. K R venkatesha, President of KPAMRC, Bangalore received BEST INDIVIDUAL PARENT NATIONA TRUST SPANDAN AWARD FOR 2012.

 

AUGUST 25-26, 2012

REGIONAL PARENTS MEET WAS ORGANIZED AT KANPUR WITH THE SUPPORT OF NATIONAL INSTITUTE FOR THE MENTALLY HANDICAPPED (NIMH) AT KANPUR.

The two day event was hosted by Dr. Preeti Misra of Kalyani Charitable Trust, Kanpur. Nearly 140 parents participated in the two day program. A new parents' Association has been formed at Kanpur.