Self Advocates Forum of India (SAFI)

 

SAFI

 

 

 

Self Advocacy:

SWAYAM ATIVAKTHA

In recent times in India, support for Persons with Intellectual and developmental Disabilities (PwIDDs) have moved dramatically toward self actualization of the persons himself and moving away from the conventional practice of parental support. Self advocates in India are now gradually getting in the forefront and have partnered with Parivaar on a number of initiatives to continue this momentum and expand its impact on individuals and service system as a whole.

For many PwIDDs choice is an unfamiliar word. Until recently many if not most, choices have been made for them by family or care givers. Before learning to step out into society, individuals must understand and know how to make choices for themselves.

Realizing the importance of empowering PwIDDs, PARIVAAR initiated training in self advocacy since 2008 with support from CBM SARO, Bangalore. After promoting the program in several states, created a national forum “Self Advocates’ Forum of India” (SAFI). SAFI chapters have been formed in the states of Andhra Pradesh, Karnataka, Kerala, Odisha, West Bengal, Tamilnadu and Maharashta.

 

See Gallery for Photos

National Trust & Parivaar are collaborating in expanding the formation of SAFI chapters in other States. Three day workshop for state coordinators of National Trust have been conducted and a review meeting has also taken place. Atleast five NGOs will be trained in each state to form self advocacy groups.

National Level Advance Mentors Training is also proposed to be organized in june 2013. 

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PROFILE OF PRANAY:

 

THE JOURNEY CONTINUES ………

 

 1. Full Name       :       PRANAY PURUSHOTTAM BURDE      

 

 

2.      Residential address                             : A-301, Shivashish,

                                                                 S.V.Road, Andheri (W)

                                                                 Mumbai-400058

                                                                       

  1. Date of birth                                       : 20-02-1988

 

  1. Nature of Disability                            : Intellectual and Developmental (Downs Syndrome)

 

  1. Education qualification                       : Cleared Level B of National Institute for Open School

 

  1. Special Education                               : 

Sl. No.

Period

Name of the school

Nature of School

Progress Report

1

1993-94

Vivekanand Kendra, Nagpur

Play Group for normal children

Satisfactory

2

1994-95

Tip Top Convent, Nagpur

Kinder Garden for normal children

Satisfactory

3

1995-96

May Flower School, Nagpur

Special School

Satisfactory

4

1996-2006

Dilkhush Special School, Mumbai

Special School

Satisfactory

5

June to Aug 2006

Workshop of Dilkhush Special School, Mumbai

workshop

Moved out

6

Sept 2006 – April 2007

Special Independent Academic Coaching in Dilkhush Special School, Mumbai for preparation of Level B exam of Pre-NIOS (Pratham)

Open School

Cleared Level B Exam of Pre-NIOS, New Delhi (Pratham)

 

7. Technical qualification                        : Nil 

  1. IQ                                                        : 48

9. Working address                                 : Hotel Leela Kempinski,

                                                              Near Chhatrapati Shivaji International Airport

 

  Sahar, Andheri (W),

  Mumbai-400059

 10. Monthly Income                                 : Joined Hotel Leela Kempinski on 23 April 2007 on a monthly                                                                                                             salary of Rs.4500/-. His present monthly salary is Rs.6120/-

 

 

11.  Short Life Sketch (Family Background)          

Family Background:

Pranay Burde is 26 year old boy born on 20th Feb 1988 in a middle class family. His father was in government service and is now retired. His mother is a homemaker. He has a 31 year old elder brother and a 21 years old younger brother.

 Parents’ agony at initial stage:

Pranay was born in Aurangabad on 20th Feb 1988. When he was born his parents were very happy and joyous as a cute and sweat baby boy had arrived in the family. After his birth doctors, the gynecologist, and pediatricians did not tell his parents what the problem was. As a child he showed slow signs of development. He could not hold his head and neck till he was four months old. His parents complained to the pediatrician, but the pediatrician did not disclose the problem. When Pranay was just four months old his parents visited one of their relations who was a general practitioner and told him the problem that Pranay was not holding the head and neck. He observed Pranay for 10 minutes but did not spell the exact problem. While leaving his house he expressed doubts that Pranay might have some mild mental retardation and his parents should speak to regular pediatrician back in Aurangabad. When parents spoke to pediatrician in Aurangabad he categorically said that Pranay did not have such problem. Pranay’s parents were transferred to Delhi. His father on the advice of his colleague took him to All India Institute of Medical Sciences. The test was conducted at All India Institute of Medical Sciences, New Delhi. The test revealed that Pranay was born with Down Syndrome (21 trizomy).

Life Sketch:

Subsequently his parents were transferred to Nagpur. He was given speech and physiotherapy at therapy centre and exercises were regularly practiced at home on regular basis. 

He, at the age of five was put in normal school but shifted to special school at the age of seven as that time adequate facilities needed for children with intellectual disability were not available in the normal school. In 1996 his parents were transferred to Mumbai and put Pranay in Dilkhush Special School, Juhu. In school he was taught other activities of daily living such as brushing, toileting, buttoning, etc.  In school, besides functional academics, he was taught time and money skills, self care skills which include care for appearance, and manners in talking and relating. More emphasis was given on sports, yoga as a part of physical fitness.

The school educated parents too by organizing seminars for parents and taking them to National Institute for Mentally Handicapped. Parents also learnt few exercises, behavioral modifications and occupational skills, which have benefited Pranay.

Pranay started traveling by himself at the age of 11. Seeing Pranay traveling all by himself many children of the school also started traveling by public transport. For the last 16 years he has been using public transport (B.E.S.T. bus) independently to move around in Mumbai.

He was out of school after 18 years of age and put in the school workshop. But, seeing his progress in academic and social skills he was, after three months removed from the school workshop and put back to school and was given special independent academic coaching for eight months. During this period he passed level B examination of PRE-National Institute of Open School, New Delhi.

 Employment:

At the age of 19, on 23 April 2007 Pranay joined Hotel Leela Kempinski, a five star hotel in Mumbai. He has been working with Hotel Leela Kempinski for the last seven years. He got this job with the great efforts of Sister Noela Pareira, the Principal of Dilkhush Special School. His working hours are right from 11 in the morning to 8 in the evening. He is in this shift for many years. He is posted in the uniform/linen section of the housekeeping department. His job is to take out uniforms bearing specified code number from the rack and handover those to employees, take back and arrange those in the rack according to code number. He also does folding and arranging of linen in racks and trolleys. His work output is much more than the other normal employees of the department. He gets salary and is entitled for contribution to Employees Provident Fund and medical insurance scheme implemented by Employees State Insurance Corporation. He has a bank account with facilities of ATM and net-banking.

Pranay attended XV Special Employees National Meet held in March 2010 at National Institute for the Mentally Handicapped, Secunderabad.

 Bravery:

He braved all odds during the 26th July 2006 deluge in Mumbai, and had to stay overnight on the road with no communication and power.

 Other achievements:

Pranay can operate computer and do simple data entry, typing, formatting and emailing. He is on face book. Pranay is a winner of One Gold, One Silver and One Bronze Medal in Roller Scatting at Special Olympics, National Games 2002, held at Banglore. Besides roller skating, he likes cricket, football, swimming and basketball. Many articles on success of Pranay were published in daily newspapers.

 Self Advocacy:

As soon as Pranay turned 19 he got his name registered in the voters list, the same is listed at serial number AJ02614667 in Mumbai suburban district, Maharashtra. He possesses voter’s identity card. He has voted once in Municipal election held in 2010, once in parliament election in 2009 and assembly election in 2010. 

Pranay for the last four years has been advocating for the rights and inclusion of Persons with Downs Syndrome and other forms of intellectual disabilities in the mainstream of society and proved to be an inspiration for most of the self-advocates in Maharashtra. He attended Self Advocacy Training programme held at Nagpur in Oct 2010 and also in Mumbai held in June 2011 organized by Parivaar, National Confederation of Parents Organizations. He participated in First National Convention of Self Advocates held in Delhi on 4 & 5 Oct 2013. He is on his own demands his rights. One day he went to the personnel department of hotel Leela Kempinski and said to one of the officials that, “I have completed five years in the hotel and you are still paying me Rs.5000/-“ and from next month he got the rise of 20% in his salary.

He withdraws money from ATM, keeps money in pocket and spends for traveling in bus and taxi and going for outings with his friends. he also possesses UID (Adhar) card.

As Self Advocate Pranay imparts training to prospective Self Advocates. He delivered talks on Self Advocacy to parents and prospective Self Advocates in Mumbai, Thane and Nagpur.

Now he wants smart phone and iPhone as his brothers and friends have.

 Awards Received:

1.     2014 World Down Syndrome Day Award:

World Down Syndrome Day is a global awareness day observed on 21 March each year as announced by United Nations Organization. Ahead of World Down Syndrome Day on Friday 21 March, Down Syndrome International (DSi) has announced the name of the recipient of the 2014 World Down Syndrome Day Awards. This year, Pranay has been honored with the 2014 World Downs Syndrome Day award in recognition of his outstanding self advocacy and achievements which have brought laurels to Persons with Downs Syndrome. In a letter received here on 13th March 2014, the President of DSi Vanessa Dos Santos congratulated Pranay for winning the Award. In her message she said, “I am delighted to announce your name for this year’s Award. We would like to thank you for making us aware of the incredible work you are doing to strengthen and enrich the lives of people with Down syndrome.”

2.     Best Intellectually Challenged Employee Award:

Pranay won the prestigious B.C.Shah Memorial award for the “BEST INTELLECTUALLY CHALLENGED EMPLOYEE”. Pranay won this award for his successful completion of seven years of service with The Leela Kempinski, Mumbai. The award is instituted by Society for the Vocational Rehabilitation of the Retarded, Mumbai. The award comprised of the citation certificate, memento and a cash of Rs.5000/-. Pranay received the award by the hands of Chief Guest Dr. Shrikant Dikhale, President, Goodlass Nerolac Paints Charitable Trust on 18th Feb 2014 at Tarabai Hall, Marine Lines, Mumbai. While acknowledging, Pranay thanked the Trustees of SVRR and the management of The Leela Kempinski, his employer and his colleague who accepted him as he is and supported him in his endeavor to lead his life with dignity. The award presentation function was graced by Mr. Suprabhat Banerjee, Manager, Dept of personnel, and Mrs. Aparna Chauhan, Head, Dept Housekeeping of The leela Kempinski besides trustees of SVRR, eminent personalities in the field of disability.

 With these achievements he sincerely works and wishes to devote himself to improving the lives of persons with Down Syndrome and other forms of disabilities, their right and independent living in the Society with dignity. In these attempts, he is a braving self advocate. He gives credit to his parents, brothers, teachers, colleagues, friends and society at large without whose support and encouragement he could not have been able to come up to this stage.                                        

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         UNFINISHED JOURNEY :

Name:    Sudipta Mishra

Location:  Bhuvaneshwar, Odisha

Form of Disability:   Cerebral Palsy

Current status/occupation:   

  • Assistant Course Co-ordinator for Diploma in Education Special education Cerebral Palsy (D.Ed.SE.CP) and library in charge at Open Learning Systems
  • President, Self Advocates Forum of India (SAFI), Odisha Chapter
  • Executive Council Member of Parivaar, Odisha

 Sudipta has been actively involved in advocacy initiatives since 2008 and is an inspiration for most of the self-advocates in Odisha. She was part of the demonstration project of supported decision making undertaken by Parivaar (an organisation of parents of persons with intellectual disability) in Odisha. Parivaar[1], a CBM Partner, is the primary promoter of Self Advocates Forum of India (SAFI).  

 Sudipta Mishra is a young woman with Cerebral Palsy, which resulted from improper management of the delivery process by the doctors at a good medical college and hospital. It was a twin delivery and while the doctors waited for the second child, they neglected Sudipta who did not cry at birth, which resulted in this damage.  It was only after 5-6 days that the paediatrician identified what the real problem was!

 As a child in early days, Sudipta showed slow signs of development when compared to her twin sister.  She had no proper head and neck control, salivating, did not turn on her stomach, etc., according to the developmental milestones.  The consultations with paediatricians in the nearby hospitals did not show any improvement in Sudipta. 

 When she was 4-5 years, consultation with some experts of that time, led the parents to the National Institute for the Mentally Handicapped (NIMH) in Secunderabad, National Institute of Mental Health and Neuro Sciences (NIMHANS) in Bangalore and National Institute of Rehabilitation Training and Research (NIRTAR), Cuttack, Odisha.  While all the three were good in their own way, the parents found great support from NIMH and NIRTAR.

 

At NIMH, Sudipta and her parents were offered residential care facilities.  Residential cottages with payment of Rs. 500 per month was available then.  But the parents could not take it up as both husband and wife had regular jobs.   Therefore the parents were taught few exercises, behavioral modifications and occupational skills, which would benefit Sudipta.   They also gave the parents brochures which had information on development of child at different stages, which could be followed at home, which was very beneficial.  Though the institute was quite a distance away from home, the parents took her to NIMH more than 3 times for their guidance.

 Sudipta faced many challenges in her upbringing:

  • In childhood, she was not able to take solid food, chew properly or even swallowing properly.  Head and mouth coordination was not there and was unable to take food on her own till 4 – 5 yrs.  NIRTAR helped with exercises to develop hand and mouth coordination, improve her movement/walking on straight line and other activities of daily living such as brushing, toileting,  buttoning, etc. Adaptations and developmental aids were prepared so that she could independently manage her activities.  The father says, “Though lot of time was put on it, gradually we found results”. 
  • Sudipta joined school when her twin sister was already in the 4th standard.  However, her parents had to move her from school to school, reason being that she was not able to write or speak properly.  There was no clarity in her speech. With much persuasion and intervention of the parents a public-private school – ‘Happy Hours’, enrolled her as a student, agreed to take oral exams to promote her and cooperate her with parents, where she studied until 5th standard. 
  • During her secondary education for 6th standard, Sudipta’s parents approached one of the multipurpose schools, Bhubaneswar, Government of India under the Central Board of Secondary Education (CBSE), for admission.  But the principal outrightly asked what benefit he would get by giving their daughter an admission in their school.  When the provisions under the Persons with Disabilities Act (PWD Act) was shared, the Principal answered, “OK I understand that there is provision in the Act, but there is no mention to what punishment I will get if I do not follow the provisions of this Act!”.  

 In higher primary standard exam, Govt. aided and owned educational intuitions denied my admission to their school, due to my aforesaid difficulties and apprehending their school result may suffer setback as I may do not do well.

  • At high School level even after enactment of PWD Act, the head of the institutions hesitated to admit her in their schools. One public school which used to receive aid from the government wanted a legally enforceable undertaking from her father, putting a condition therein that she must secure at last 50% marks in the test examinations for class X, failing which she shall have to be withdrawn from their School.  While the parents prepared the stamp paper and affidavit, they once again approached the principal and questioned, “If a dull student was denied education in the very institute receiving aid from the government, would that not be an offence and violation of rights of citizens of India which could be taken up in the court of law?”  The father also having post of Deputy Secretary at the State Government Finance Department, was able to challenge the school with authority.  The principal after that did not insist on the affidavit after being appraised of legal consequences from my parents.
  • At the qualifying Indian Certificate of Secondary Education (ICSE) Board examination which Sudipta was to appear, the authority did not allow her a scribe and allow her extra time. Again with intervention of her parents after highlighting the statuary provisions in this regards the authority sought permission from ICSE board New Delhi. On being informed with documents by her parents that such provision exists in CBSE board, ICSE board  allowed for a scribe/special amanuensis with extra time of half an hour. Sudipta appeared the exams and passed in higher second division.
  • When Supita applied for enrolment in a Women’s Politechnic in Bhubaneshwar, her application was rejected as she had a disability of more that 45%.  The departments of Industrial Development, Government of Odisha, Women and Child Development were approached, but she did not find help as it was a government decision which needed to be made and the brochure for application had to be amended.  Therefore a case was filed with the Chief Commissioner of Persons with Disabilities (CCPD) office, New Delhi in 2003.  This was taken up by them and while they were requested to file a counter, the department in turn amended the brochure and reversed the earlier restriction. Thus due to intervention of her parents and Parents Association, the State run educational institution preparing female candidates for vocational professions had to modify their principle to accommodate persons with disability providing reservations.   However, as a year was lost, Sudipta did not further pursue the course.

 As a self advocate, she also works for her right and also for others like her.  Some of the other challenges to quote are that of the Public transport operators who were not allowing benefits available to persons with disabilities, so she intervened and questioned the conductor as to why he is not inclined to the concessions admissible to eligible persons with disabilities… she says, “He has no answer but to allow concessions.”

 

  • Another such incident is when she helped a doctor with super specialization and having treating experience over 30 years differentiate between Mental Retardation (MR) and Cerebral Palsy (CP), as he recently classified her as a patient of Mentally Retardation. She says, “After my intervention he suffixed (CP) to it . After my further intervention  he striked out “MR” with brave admission that he has little knowledge about “MR /CP”.  This is the state of affairs at Odisha” she quotes. 

 Some of her achievements:

  • In spite of discouragement from most of the places and persons associated with imparting education, Sudipta has completed her graduation. There after she completed Computer Courses like Post Graduate Diploma in Computer Application, webpage designing, animation etc. 
  • Due to the interference of her parents and Parents Association, special provision for a person for writing the examination paper on her behalf was arranged from a special school imparting education and training to children and young adults suffering from mental retardation, Cerebral Palsy, Autism etc. at secondary, higher secondary and university level examinations.
  • She has attended and participated in many seminars/workshops on disability management issues, especially on inclusive education and self advocacy in the line of provisions of UNCRPD, organized by State Government, Government of India, RCI, National Trust, Inclusion International, and other NGOs and has also presented several papers on inclusive education and self advocacy in different magazines and souvenirs.

 

  • She was considered as best person with disability  to achieve all round activities  and honoured with “REDCROSS SAMMAN 2005” by honb’le Chief Minister of Odisha on Odisha day that is 1st April 2005.

  • She is a member of a 15 member advisory committee for implementation of inclusive education and other provisions of UNCRPD, member in executive committee of PARIVAAR National Confederation of Parents’ Organisations (NCPO), president of state unit of self advocacy team in Odisha, a unit of SASI (SELF ADVOCACY SOCIETY OF INDIA).

 

  • She led a team of delegates along with Dr. Shruti Mohapatra ,Chief Executive SWABHIMAAN with other  members of disability network to Honorable Chief Minister of Orissa and convinced him to have an independent commissioner of disability for Odisha and succeeded in this endeavor.

 

  • Recently she has played a theme role in a Short Documentary Film titled as ‘DOVE’S TALE’ on possibility of marriage of persons with disability and leading and independent life organized by an organization known as ‘WE CARE’.

 

  • Besides these she has been awarded with several prizes and honors’ in athletics, vocational competitions, speeches, debates etc, organized by institutions of eminence working both at National and State level.  She was also awarded as Best Person with Disability award for 2011 by the Minister of Social Justice and Empowerment on behalf of National Trust for persons with Mental Retardation, Cerebral Palsy, Autism and multiple disability.

 

  • Six years she worked at Open Learning Systems as a computer instructor.

 

  • Worked for one year as an Assistance Advocacy Officer at Swabhiman, State disability information and resource center, Bhubaneswar. Rejoined Open Learning Systems as a assistance course coordinator Diploma in Education Special education Cerebral Palsy (D.Ed.SE .CP) and library in- charge.

 

  • She has organized and formed an in house Self Advocacy forum consisting of 15 member who are basically persons with CP and mild MR. In the forum they meet every Friday and discuss several aspect of self advocacy and their individual Exposure to it.

 

With these achievements she sincerely works and wishes to devote herself to improving the lives of persons with disability, their right and independent living in the Society with dignity. In these attempts, she is a braving self advocate. She gives credit to her parents without whose support and encouragement she could not have been able to come up to this stage as well as Open Learning Systems for providing motivation and proper environment for her success up to this stage.

 Recommendations from Sudipta:

“From some of my above experience my advice to you would be that the existing society is loaded with negative attitude and they never desire to come out of their conservative and primitive state of mind and outlook. So in order to ensure from them a proactive and positive mind set and outlook we have to be more determined and stubborn in our approach to them while putting our cause. We shall have to instill within ourselves a confidence of being successful in each and every attempt of our’s because we are having legal authority with us. We shall have to put our fight on till they are compelled to utilize their authority in right direction. One should not give up or be disheartened and silently accept the whims of the society till the persons in charge are out of their existing stigma. If this can be achieved, then the persons with disabilities can ensure a place for themselves in the permissible society at the equal platform as others not out of mercy or sympathy of any individual or group but by their sheer merit and right.”

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