INDEX No. Subject Page No. 1. Index 1 2. Executive Council 2016-19 2 3. Parivaar Introduction 4 4. Annual Report 2018 – 19 6 a. Advocacy with Governments 6 b. Capacity Building of Parent Organizations 8 c. Awareness Building 10 d. Initiatives for Empowerment 14 e. Governance at Parivaar 18 f. Financial Reporting 19 g. Pillars of Support 19 5. Recommendations on draft Education Policy 20 6. Membership Application Form 26 7. Organization Registered with Parivaar 27-38 8. Audit Report FY 2018-19 39-41 ANNUAL REPORT 2018 - 2019 1
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INDEX
No. Subject Page No.
1. Index 1
2. Executive Council 2016-19 2
3. Parivaar Introduction 4
4. Annual Report 2018 – 19 6
a. Advocacy with Governments 6
b. Capacity Building of Parent Organizations 8
c. Awareness Building 10
d. Initiatives for Empowerment 14
e. Governance at Parivaar 18
f. Financial Reporting 19
g. Pillars of Support 19
5. Recommendations on draft Education Policy 20
6. Membership Application Form 26
7. Organization Registered with Parivaar 27-38
8. Audit Report FY 2018-19 39-41
ANNUAL REPORT 2018 - 2019
1
2017 - 2018ANNUAL REPORT PARIVAAR NCPO
EXECUTIVE COUNCIL : 2016-19
S.No. Name Designation Tele. No. Email City State Parent Organization
1 Cdr Shrirang N. Bijur President 7387625555 [email protected] Pune MH AWMH, Maharashtra
2 Lt. Col Dr V.K Gautam Immediate Past 9425316402 [email protected] Ahmedabad Gujarat SWMR
President
3 Mrs Iona Louise Kundu Zonal VP - East 9831004412 [email protected] Kolkata Bengal Mentaid
Cdr. Shrirang Bijur – President Lt Col Dr V K Gautam – Immediate Past President
Mr P.S.Burde – Gen. Secretary Mr Bhanuprasad Chauhan – Treasurer
Mrs. Iona Kundu – Zonal VP East Mr Amarjit Singh Anand – Zonal VP North
Mr M Sukumaran – Zonal VP South Mr H.P Sharma – Zonal VP Central
Mr Nabarun Sengupta – Zonal VP NE Mr Vikas Khalatkar – Zonal VP West
Mrs. Ranoo Banerjee – Jt. Secretary Mr Abhay Kumar Dubey – Zonal Secy. Central
Mr Gourishyam Panda – Zonal Secy. East Mr Vijay Shah – Zonal Secy. North
Mr Mona D Thakkar – Zonal Secy. West Mr Akum Ezung – Zonal Secy.
Mr G Soundara Rajan – Zonal Secy. South Ms. Sudipta Mishra – President, Safi (Co-opted)
Mr G Partiban – Secretary, Safi (Co-opted)
North East
2018 - 2019 ANNUAL REPORT
5
P A R I V A A R
NATIONAL CONFEDERATION OF PARENTS’ ORGANIZATIONS
For Persons with Intellectual and Developmental Disabilities
ANNUAL REPORT: 2018 - 19
The President and Office Bearers of Parivaar are pleased to present 24thAnnual Report
covering activities till September 2019, along with Audited Statement of Accounts for the
financial year 2018 - 19.
ADVOCACY WITH GOVERNMENT AUTHORITIES
India as a nation is going thru a transformation with major paradigm shift in almost every sphere
of life of its citizens. The mantra of “sab ka saath, sab ka vikas” provides us all an opportunity to
get our sons/ daughters [with Intellectual and Developmental Disabilities (IDDs)] become part of
the mainstream, in every sphere of life. Parivaar has been strongly advocating for Inclusion of
Persons with IDD, both among its affiliated parent & non-parent organizations as well in the
social, political and administrative circles. Our advocacy for inclusion includes persons with IDD
[profound, severe, moderate, and mild] in a form that addresses the need of individual person.
This could be achieved when Parivaar parents are at a position where they can have positive
influence during the formation of policies and implementation of schemes.
A. Effective Voice in the Affairs of the National Trust
The Parliament of our country enacted the National Trust Act which created The National Trust,
to meet the specific needs and requirements of Persons with IDDs [Intellectual disability, Autism,
Cerebral Palsy and Multiple Disabilities]. We are pleased to inform you that three Parivaar
members; Ms. Ruby Singh, Mr Abhay Dubey, Ms. Pooja Patel were elected as Parent board
members of the National Trust. Mr P.P Singh, another board member representing Registered
organizations, is also a member of Parivaar. The incumbent parents were identified by the
Executive Council of Parivaar for their articulation, positive temperament and active grass root
level association with the affairs of Persons with IDDs. These leaders have already taken charge
and rearing to bring in a positive transformation in the affairs of the National Trust.
B. Recognizing Special Needs of Persons with Intellectual & Developmental Disabilities
Parivaar has been actively advocating for a national plan to take the cause of Persons with IDDs
further. The ministry of MSJE formed a committee for developing a national plan chaired by Ms.
Aloka Guha and active participation of leaders of Parivaar. The highlight was active collaboration
with ministries of Health and family welfare, Human resource development, Labour (skill
development). One of the offshoots of the committee working was deep sensitization of senior
officials of the Ministry of Social Justice and Empowerment [MAJE] to the needs of persons with
IDD. The deliberations also resulted in focus on inter-ministerial co-ordination for achieving the
inclusive development of persons with IDD.
2018 - 2019 ANNUAL REPORT
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C. Recognition of Self Advocacy& Mentors’ Training by NIEPID, NIEPMD and RCI
Another milestone in the history of Parivaar advocacy was achieved when Self Advocacy and
Mentor Training requirement and its curriculum was duly recognized by the two national
institutes (NIEPID and NIEPMD) dealing with IDDs. This was culminated with printing of an
exquisite handbook [Hindi & English] for jointly by Parivaar, NIEPID &
NIEPMD. Parivaar wishes to place on record the dedicated services of M/S Pranita Madkikar,
Charu Shah, Vijay Kant, Purshotum Burde, Parthy Mandy and many mentors and self
advocates, who over the years formed the knowledge pool culminating into publication of
Handbook for Mentors. This handbook is being extensively used for conducting Mentor training.
Further the Mentor Training was duly recognized by RCI and given CRE status for professionals
working for rehabilitation of persons with ID. For this the credit goes to the efforts of Er. Pankaj
Maru.
D. Miscellaneous Initiatives
For Parivaar advocacy is a continuing activity towards achieving the legitimate requirements of
its beneficiaries; persons with IDD and their parents. Some of the areas where Parivaar has
been active during the year are:
a.With railway board for (1) correcting the nomenclature of disabilities in line with RPwD Act
(2) extending concession to all of disabilities coming in the ambit of Intellectual disabilities
(3) alignment of issue of concession certificate in line with UDID (4) allowing persons with
ID to avail special quota of seats meant for PwDs.
b.With MSJE and the National Trust for revitalizing the guardianship process and its
continued retention in the wake of comment made by UN CRPD
c.With MHRD for inclusion of needs of Persons with IDD towards pre-school and educational
opportunities for social and inclusive development. MSJE is also considering Parivaar
recommendations for inclusion in their note to MHRD.
d. Collaborating with state governments thru respective state leaders of Parivaar for issue of
Rules of Rights of Persons with Disability Act.
e.With Registrar General and Census Commissioner for introduction of modified
Washington Group sets type of questionnaire for generating statistical data on disabilities
f. With MSJE for initiating development of system to monitor assets of Persons with IDD
which are managed by the appointed guardian.
g.With MSJE for promulgating instructions for (i) Assessment of Autism & AHSD (ii) Issue of
disability/ at risk certificate for infants/ young children (iii) instructions for assessment for
persons with high support needs.
h.With National Human Right Commission regarding inhumane and cruel act perpetrated on
a young boy with intellectual disability in Saharanpur, UP.
mentors, published
2018 - 2019 ANNUAL REPORT
7
CAPACITY BUILDING OF MENTORS FOR IMPARTING SELF ADVOCACY TRAINING
The primary cause of social exclusion of persons with intellectual disability is their lower
cognitive ability resulting in inability to learn in a manner mainstream population learn the
activities of daily living, for social habitation. This limitation further results in dependence and
perceived lack of decision making capacity among the persons with intellectual disabilities. The
inability is further compounded by years of suppression & discrimination that inhibits them to
achieve their potential. Given proper opportunity, guidance and coaching to enhance the
primary Life Skills the persons with intellectual disability can become part of society and
workforce. Such life skill training is termed as “Self Advocacy Training” and is imparted by
“Mentor” volunteers who also acts as friend and guide to his/ her trainee for the future. The
persons with intellectual disability who undergo this training are graduated as “Self advocates”.
A. Capacity Building of CBM Partner of Persons with
Intellectual Disabilities in Livelihood Schemes
In year 2018 CBM organized two workshops in Bhopal and Patna to facilitate sharing of
experience among the partners in implementing rural livelihood programs in CBID format. The
participants belonged to partner organizations from the states of Madhya Pradesh, Bihar,
Jharkhand, Chhattisgarh, Maharashtra, UttarPradesh & Uttarakhand. Parivaar–NCPO also
participated in both the workshops and made a strong plea for including Persons with IDD in the
livelihood schemes. One of the opportunities emerging out of the workshop was to suitably train
persons with intellectual disabilities [in self advocacy] in rural areas after which they can join
livelihood schemes and become earning members of their family. At present their participation in
MGNREGA or SRLM schemes is negligible if not zero. A joint action plan (CBM, BVJF and
Parivaar) was devised at the end of second workshop.
The plan was to train BVJF community organizers/ DPOs to enable them to inculcate Self
Advocacy (skill) among Persons with Intellectual Disabilities, in rural areas. This will enable
persons with IDDs, located in rural areas, to overcome their limitations in joining livelihood
schemes. This would also enable social inclusion of persons with intellectual disabilities which is
a pre-requisite for leading a life with dignity and purpose.
As part of this convergence initiative CBM sponsored three Mentor training workshops. BVJF
embarked on to train 60 no DPOs and livelihood projects’ personnel as Mentors who would
understand the needs of persons with IDD and be able to coach them for inclusion in the
livelihood and SHG programs. BVJF members organized the workshops at dist,
Maharashtra, Gorakhpur, Uttar Pradesh and Ranikhet, Uttarakhand. Parivaar NCPO developed
a three day training curriculum for BVJF personnel, out of the Mentor training curriculam.
Parivaar NCPO also provided its master trainers as resource persons for the program.Seventy
DPO to Enable Inclusion
Amaravati
2018 - 2019 ANNUAL REPORT
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six DPOs/ Community organizers attended the Mentor training workshops along with 21 parents
and professionals. The participants were from CBM partner organizations located in the states of
Bihar, Chhattisgarh, Jharkhand, MP, UP, Uttranchal and Maharashtra. The training was
conducted by 8 master trainers deputed by Parivaar-NCPO.
The component of Self Advocacy training module in the Mentor training curriculum included
activity oriented games, role play, group discussions, communication & speeches, and host of
activities; all dedicated towards inculcating life skills in the trainees (persons with intellectual
disabilities). The life skill focus is on imparting/ enhancing Self Awareness, Awareness about
rights and responsibilities, Listening skills, Managing feelings, Self-protection, Solving small
problems, Interpersonal relationship, Effective communication and Decision making.
The above three days training programs effectively prepared the Community workers/ DPO
members to act as a Mentor for building potential of persons with intellectual disabilities. The
training elicited good response and enthusiasm among the participants who were graduated as
Mentors. Further such aware community organizers and DPO members will also facilitate
advocacy in the community to ensure that persons with intellectual disability are not isolated or
marginalized at home or in the community.
B. Mentors’ Training & Self Advocacy Programs in Five states
From 1st January 2019 Parivaar in collaboration with CBM has started implementing Mentor’s
training and Self Advocacy programs in the states of Madhya Pradesh, Rajasthan, Odisha,
Jharkhand and Maharashtra. Following Parivaar partners are acting as nodal state coordinators
for implementing the project in their respective states:
1. Madhya Pradesh -
2. Jharkhand – Bhawishya Kiran
3. Rajasthan – Asha ka Zarna
4. Odisha – DAPPW
5. Maharashtra - Parivaar
The project has progressed as per the plan in first two quarters achieving the milestones as
follows:
No of Mentors trained : 350
No of districts involved in 5 states : 21
No of talukas where training was conducted : 43
During the Mentor training program held at Nagda the Mentor training was awarded CRE status
by RCI.
Nishakt Vayahti Abhibhavak Sangh
2018 - 2019 ANNUAL REPORT
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BUILDING PARENTS’AWARENESS
Every year NIEPID in collaboration with Parivaar NCPO conducts National Parent Meet (NPM)
and Regional Parent Meets (RPMs) in different parts of the country. These Parent meets are
hosted by local Parent organizations affiliated to Parivaar for which funds are provided by
NIEPID. The Parivaar which is a national federation of Parents’ organizations (NCPO) works
closely with host organizations and support them with know-how and resource persons for the
RPM/ NPM. Together they also identify and motivate the parents of PwIDDs in the region to
attend the meet. The objectives of the regional parent meets is to:
1. Make the parents aware about their critical role in empowering PwIDDs
2. Spread awareness among the parents about the rights of PwIDDs as enshrined in RPwD Act
2016 and The National Trust Act 1999
3. Create awareness among the parents, professionals, NGOs regarding provisions and
schemes of GOI, State government and Local governments for empowerment of PwIDDs at
various stages of
4. Form a network and collaboration among the parents, professionals and state government
teams for achieving empowerment and education & social inclusion of PwIDDs
5. Form local associations of Parents [on community based inclusive development model]
wherein the parents form groups to seek services required by their son/ daughter with ID, with
support from the government.
The theme of RPMs & NPM was SOCIAL INCLUSION AND LIVING LIFE WITH DIGNITY.
During the financial year 2018 – 19 following seven RPMs were conducted by Parivaar in
collaboration
RPM at Bodhgaya, Bihar 8th& 9th August 2018
RPM at Agartala, Tripura 21st& 22nd September 2018
RPM at Imphal, Manipur 13th& 14th October 2018
RPM at Aalo, Arunachal Pradesh 23rd& 24th November 2018
RPM at Mandamerri, Telangana 20th& 21st December 2018
NPM at Bhillai, Chhattisgarh 12th& 13th January 2019
RPM at Kurukshetra, Haryana 12th& 13th March 2019
RPM at Jamshedpur, Chattisgarh 23rd& 24th March 2019
NPM Bhillai : The key note address given by Dr Himganshu Das emphasized on social inclusion
and the role that parents can play to ensure that their child is never discriminated at home or in
public. Over 320 parents participated in the NPM representing 17 states and 2 UTs. Some
parents came with their PwIDD wards. The eminent speakers were Prof RS Murthy, past
NIMHANS, and eminent personalities from diverse fields such as Mr Aneesh Saxena,
their life.
Professor
2018 - 2019 ANNUAL REPORT
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Dr Afshan Jabeen. There was close interaction among the parent, professionals and resource
persons.
No of Parents/Professionals & No of Persons with intellectual Total
Community workers/volunteers and developmental disabilities Participants
Male Female Male Female
128 149 27 17 321
RPM at Bodhgaya : The 1st RPM of 2018-19 had very large participation from Parents since the
last RPM conducted in Bihar was in 2013. Dr Shivaji Kumar, Commissioner of PwDs of Bihar, Dr
Keshwal, Incharge RC NIEPID Kolkata and Dr Rahul Mehta from Parivaar NCPO are all alumini
of NIEPID and spoke on various topics during the RPM. Dr Shivaji Kumar also delivered key-note
address as the chief guest and his presentation set a benchmark for the role of commissioner for
empowerment of PwIDDs. The parents highly appreciated the information exchange in Hindi and
were motivated to form the first parents’ group in Gaya district of Bihar.
No of Parents/Professionals & No of Persons with intellectual Total
Community workers/ volunteers and developmental disabilities Participants
Male Female Male Female
84 52 17 7 160
RPM Agartala: The RPM at Agartala was conducted in a professional manner and was
characterized by emphasis on skill building as a route to social inclusion of PwIDDs. Self
advocacy was also professed by Parivaar and very well received by Parents. They wanted to
have a stronger emphasis on inclusion from local administration which was agreed by the state
government. A mentor training course for volunteers was planned to be conducted subsequently.
No of Parents/Professionals & No of Persons with intellectual Total
Community workers/ volunteers and developmental disabilities Participants
Male Female Male Female
67 74 14 9 164
RPM Alo, Arunachal Pradesh : Among all the RPMs, the RPM at Aalo, Arunachal Pradesh
had unique distinction of recording attendance of over 680 delegates attending both days of the
event. These delegates comprised of parents, professionals, Anganwadi sevikas, ASHA
2018 - 2019 ANNUAL REPORT
11
workers and teachers. During the inauguration the chief guest was Shri Jarkar Gamlin, Minister
of Tourism, Tax & Revenue, Arunachal Pradesh. The guests of honour included Mrs. Shakuntala
D Gamlin, Secretary, DEPwD/ MSJE along with Mrs. Dolly Chakraborty, Joint Secretary, MSJE.
Dr Himangshu Das, Director NEIPMD. Major Ram Kumar, DDA NNIEPID, attended the RPM at
Aalo as the hosts. NIEPID also distributed awareness kits to Anganwadi sevikas during the RPM.
The Parents and local professionals were also briefed about using TLM kits and the kits were
distributed to over 30 children.
No of Parents/Professionals & No of Persons with intellectual Total
Community workers/volunteers and developmental disabilities Participants
Male Female Male Female
207 388 57 35 687
RPM Mandameri, Telangana : The RPM at Manadamari, Telangana, was conducted at BCCI
premises next to the coal mines. It saw many parents belonging to coal field employees and
labourers and agriculture labour from neighboring areas evincing keen interest to know about
early intervention, concept and practice of inclusion and self-help groups. The NIEPID staff and
Parivaar volunteers conducted hands-on Self-advocacy training to motivate the parents to take
Mentor roles. Many illiterate as well as working mothers came forward to form an associations to
take forward the schemes discussed during the RPM.
No of Parents/Professionals & No of Persons with intellectual Total
Community workers/ volunteers and developmental disabilities Participants
Male Female Male Female
47 72 18 11 148
RPM Kurukshetra : The RPM had special emphasis on autism/ ASD disabilities since many
parents in the region wanted to know details and supporting measures for these disabilities. Mrs.
Mary Barua and Mrs Chaswal who are the leading autism professionals in India addressed the
meet and answered many queries (individual & group) after their technical sessions. The
professionals from Muskaan, Delhi, talked about skill building and open employment in private
sector, and the mentoring efforts.
No of Parents/Professionals & No of Persons with intellectual Total
Community volunteers and developmental disabilities Participants
Male Female Male Female
77 97 11 6 191
2018 - 2019 ANNUAL REPORT
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RPM Imphal : The RPM at Imphal, Manipur, was interesting because of active participation by
local parents. There were many parents of children with Autism and good time was spend by
NIEPID faculty and local professionals to dwell on sensory integration. Mr L Dhaneswar Singh,
local advocate and Dr Ch Noren Singh dwelling on local government initiatives and how parents
can collaborate together to avail more schemes benefitting their children with intellectual
disabilities. There were many community leaders who volunteered to participate in RPM which
had good impact in future for social integration of PwIDDs in Manipur.The children with ID from
Imphal were also very enthusiastic and put up good cultural show in the evening.
No of Parents/Professionals & No of Persons with intellectual Total
Community volunteers and developmental disabilities Participants
Male Female Male Female
47 58 12 15 132
RPM Jamshedpur: The last RPM of the financial year was conducted at Jamshedpur. Here there
are well managed assisted workshop facilities managed by parents. The emphasis was social
inclusion of these adult PwIDDs who work in assisted workshops but did not have opportunity for
inclusive life. Therefore Self Advocacy sessions were taken up in good stride by Parivaar
resource persons and supported by local parents. Subsequent to RPM a strong group of Parents
has emerged which is enabling conduct of Mentor training courses for parents and volunteers in
Jamshedpur and adjoining districts.
No of Parents/Professionals & No of Persons with intellectual Total
Community volunteers and developmental disabilities Participants
Male Female Male Female
81 88 16 4 199
All the RPMs and NPM conducted in year 2018 – 19 achieved the objectives in terms of
awareness generation among parents and initiating CBID for PwIDDs in an aware social
environment. It also gave necessary boost to collaboration among the parents and state
government/ local authorities.
2018 - 2019 ANNUAL REPORT
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Approved RPMs/ NPMs in the year 2019-20
Srl City State Month/ Year
RPMs
1 Secundrabad Telangana October 2019
2 Madhubani Bihar November 2019
3 Dharamshala Himachal Pradesh November 2019
4 Thiruvantapuram/ Kozikode Kerala December 2019
5 Kolkata West Bengal December 2019
6 Kakinada Andhra Pradesh January 2020
7 Mangalore/ Manipal Karnataka January 2020
8 Aizwal/ Dimapur Manipur/ Nagaland February 2020
9 Gangtok Sikkim March 2020
10 Banaras Uttar Pradesh March 2020
NPM
1 Ahmedabad Gujarat October 2019
OTHER INITIATIVES FOR EMPOWERMENT
A. Data Collection System to Analytically find out the Reasons for Low Penetration of
Schemes Developed for Persons with ID
Data is the back bone of advocacy. When armed with reliable and authentic statistics the
effectiveness of advocacy multiplies. Therefore Parivaar has developed a portal for collecting
and analyzing data and initiated a data collection drive all over India with the support of its
member organizations.
The data collection format has been made as simple as possible. The organizations have to log in
from Parivaar portal The entire data entry system is menu driven and the
format is self-explanatory. The system is focused to find out reasons for PwIDDs & their parents
not being able to avail services of government schemes and provisions. There are:
i. Why the child has to go to a Special school or not going to any school
ii. Why child is deprived of play or recreation facilities
iii. Why person with ID has not enrolled into health insurance scheme
iv. Reason for not being able to avail health services
www.parivaarnfpa
2018 - 2019 ANNUAL REPORT
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v. Reason for not having a disability certificate
vi. Why the person with ID is not employed
vii. Reason for not availing disability pension
viii.Reason for not availing bus/ train fare concession
ix. Why guardianship provision not availed, if over 18 years age.
x. How the person with ID going to manage after parents are no more
By getting answers to above queries in a drop down menu format the system provides very
pointed information.
Therefore now it is up to us as Parents & Parent Organizations to ensure that data for each
person with IDD is logged into the system. Those who online data entry can avail off
line data entry [in a excel sheet format] or can fill up data on paper form.] Filled up forms be either
scanned and emailed or paper form posted to Parivaar admin office.
B. Strategy Workshop in Collaboration with NIEPID on Rehabilitation of Persons with ID
after Parents are no more
The strategy workshop was conducted in collaboration with NIEPID in NIEPID, Secundrabad
campus. The objective of the workshop was to brainstorm on important subjects 1)
Prerequisites of residential home 2) Self Advocacy training for enhancing potential of
persons with ID to enable their employment and 3) models of financial management to
make PwIDDs independent in future. These are the subjects that are very critical for parents
but as yet, there are no researched parameters that govern the success of Parent enterprises
providing such services. Thirty two parent leaders representing 22 states and UTs across India
participated in the workshop. The core faculty of NIEPID also participated in the two day
workshop to brainstorm and guide the discussion.
Session 1: Models of Residential Homes:
During the 1st strategy session on 28th Sept 18, following four models of residential homes for
adult PwIDDs (during or after demise of parents) were discussed. There were:
a. Residential homes: In existing formats
b. Group homes: In above format but more inclusive in terms of location and living
arrangements.
c. Integrated Residential homes: In any of above two formats but parents also living in the
can not do
2018 - 2019 ANNUAL REPORT
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same campus in their own home (flats/unit) and after their demise the flat/unit goes to the
residential home.
d. Independent homes: Where the PwIDD continues to live in his/ her own home and a
Parent Organization running a group home acts as bureau and undertakes to provides
Care giver and type of care required by this PwID, on payment basis. One or more PwID
may be placed in such residences for giving company to person with IDDs, and sharing
cost/ services.
There was extensive discussion on the above models of residential care and also to find reasons
for some residential homes not taking off, as planned. These were:
A survey was carried out to find the most required attributes of group homes by parents, to have
confidence to keep their ward. Out of 26 attributes listed by parents the following were
categorized as most important:
Attributes & Ranking
a) Safety & Security 1
b) Quality of services 2
c) Availability of care givers 3
d) Parent involvement 3
e) Vision for future 4
f) Medical facility 5
g) Confidence & trust in mgmt. 5
Session 2: Getting PwIDDs Actively Involved In Skill Building and Employment:
In the Strategy Session 2, there was discussion about getting PwIDDs actively involved in Skill
building and employment. The following employment models were discussed
a. Ego of parents running the centers
b. Financial sustainability not considered
c. Parents not shifting as planned during formation stage
d. Parents not sending their PwIDD ward due to various reasons
e. Inability of parents to pay high fees.
f. Lack of confidence that group home will provide adequate security &
sustainability in long run
2018 - 2019 ANNUAL REPORT
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a. Traditional Assisted workshops
b. Open employment
c. MGNREGA (MG National Rural Employment Guarantee scheme}
d. NRLM/ SRLM ( State/ National Rural Livelihood Mission)
During discussions it was apparent that PwIDDs will have better chances for employment if they
undergo Life Skill building training and Self Advocacy training. Parivaar has pioneered Self
Advocacy training. There was considerable discussion on why Parivaar members, themselves
donot practiced Self Advocacy in a vigorous manner at their respective organizations/ homes.
Many reasons were mentioned. During the round table survey the reasons for not vigorously
practicing Self Advocacy training by Parivaar members came out to be:
Attributes & Ranking
a. Don’t know importance of Self Advocacy which points to Lack of awareness among parents
b. Lack of knowledge/guidance to conduct self-advocacy training
c. Non availability of mentors/trainer
d. Lack of confidence in own son/ daughter who is ID
Session 3: Models of Making PwIDDs Financially Independent:
In the 3rd Strategy sessions various models of making PwIDDs financially independent were
discussed along with how to manage his/ her financial affairs. In case of fiduciary management
following emerging models need careful consideration of parents:
a. Fiduciary management by banks or consortia of banks
b. Formation of private trust
c. WILL and appointment of executor of WILL by parents was considered extremely important
d. National trust as fiduciary manager
e. Using section 13, 14, 15(1), 15(2) of RPwD Act 2016 to plan arrangements through SDM
In the case of regular income the opportunity from EPS/ EPF schemes need to be considered
and applied by Assisted Workshops/ small business employment where at present PwIDs are
employed but not registered for EPS or EPF.
After summing up the recommendations of Strategy meeting the president thanked the
members for their valuable contribution of thoughts during the strategy meet
2018 - 2019 ANNUAL REPORT
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GOVERNANCE AT PARIVAAR
Parivaar, like any other progressive organization, has been on a steep learning curve. In order to
bring in simplicity and ease in follow up of governing rules it was decided to develop Office
Operating Manual from the elaborate procedure manual approved by AGM in 2013. The
procedure manual was considered to be complex for skeletal organization and required large
system support, which is not feasible within the HR resources of Parivaar. Office
Operating manual has been implemented fully along with statutory guidelines.
CBM team carried out an in depth 3 days review of Parivaar administration and governance
practices. CBM team appreciated the Parivaar Office Operating Manual, implemented system,
manpower competence and financial accounting practiced at Parivaar administrative office.
They reviewed the following systems and expressed their satisfaction in their report submitted to
their principles, and copy shared with Parivaar. The major areas reviewed and given positive
report were:
a. Statutory compliances
b. Minimum financial criterion, Financial accounting system and follow up
c. Internal controls
d. Comprehensive double entry financial system, regular internal reviews
e. Budget, Cash flow management, risk management and forecasting
f. Anti-corruption and other statutory policies
g. HR management, job description and management
h. Capacity to manage projects
i. Equal opportunity policy, Rights & Equality of women employees
j. Commented favorably on capacity to manage projects, project delivery, regular reporting
k. Efficient management and supporting Parivaar partners executing the projects
l. Mechanism and resources in place to manage risks
m. Good and competent leadership in place
CBM has given some suggestions for further enhancing and fine tuning the system. These were
incorporated to the satisfaction of CBM within a month of review.
The simplified
2018 - 2019 ANNUAL REPORT
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FINANCIAL REPORTING
A. Audit Report:
The annual audits were conducted for financial year ending 31stMarch 2019 by M/s SPARK and
Company. Copy of the Consolidated accounts with Auditor’s report in Form 10A is attached at the
end of
PILLERS OF SUPPORT
Parivaar sincerely thank CBM for supporting Networking & Self Advocacy projects, NIEPID for
sponsoring RPMs and NPMs, Sumitra Ramarao Nagarkatti Foundation and Shri PS Burde for
their generous donations for supporting initiatives of Parivaar. Parivaar is much grateful to Mrs.
Anjali Bijur for providing her flat, free of rent, for housing Parivaar AO office during this reporting
year.
In the end I on behalf of office bearers of Parivaar NCPO wish to thank all member organizations,
parents, professionals and Persons with Intellectual and Developmental disabilities (Self
advocates) for their whole hearted support, guidance and encouragement that enabled us to
work towards our objectives, to the best of our ability.
Thank you and Best wishes
Cdr. Shrirang N. Bijur
President, Parivaar NCPO
The Annual Report.
2018 - 2019 ANNUAL REPORT
19
ANNEXURE 1
PARIVAAR NCPO OBSERVATIONS & RECOMMENDATIONS ON
NATIONAL EDUCATION POLICY
1. Early Childhood Care and Education [ECCE] for very young children between 3 to 6
years age, while taking cognizance of the difference in the development of their
cognitive abilities.
It is rightly pointed out in the draft policy that 85% of brain development occurs by the age of 6
years. Therefore policy’s emphasis on Self-help skills, Motor skills, Handling anxiety,
Communicating thoughts and feeling; is what children with different abilities can do well with.
The children with lower cognitive & sensory abilities [Intellectual disabilities, Autism/ AHSD,
Multiple disabilities] will require one to one therapeutic care as will be the case with blind,
physical/ neurological and hearing impaired children who have to be given special support for
learning braille/ sign language etc. Compulsory/ special emphasis be provided for the
foundational stage framework [flexible, multilevel, play based, activity based, shape-sound-
movement games, local language, building curiosity-patience-socio-emotional skills etc]. Also
provision should be made in the pre-primary level for children with varying cognitive abilities for
lower pupil teacher ratio (PTR). This would serve the special needs of differently abled young
children for attaining their full potential.
Recommendations:
a) Schools receive pooled therapy resources from National Health Mission/ District early
intervention center (DEIC)/ Composite Rehabilitation Center (CRCs) during ECCE for one
to one sessions with students with special needs.
b) Lower teacher – student ratio during ECCE for children with special needs to enable their
grasp on learning tools [cognitive building, sign language etc]
c) Emphasis on teaching rot skills at pre-school level should be banned by state.
d) Mothers of children with special needs should be employed as resource helpers with
honorarium. To bring out the girl child mothers of girl children with special needs be given
preference over others (to overcoming security inhibitions).
2. Attaining foundational literacy and numeracy for all children.
The draft national education policy entails literacy and numeracy as an immediate national
mission for the country. Indeed it should be the national priority above all. However students with
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intellectual and developmental disabilities, based on their functional level, may have to be
tendered with different priorities. These priorities include learning activities of daily living [ADLs],
communication, recognizing self, sensory integration and social inclusion. These functional
skills are attained by most other students as a learning/ cognitive process. Such students with
special needs may have to spend more time [than the peer students] in pre-literacy and pre-
numeracy functions. Some of them [over 60%] may not be able to attain literacy and numeracy in
real sense. For them the experiential learning leading to understanding of the abstract and social
inclusion is the objective. This needs to be also articulated in the policy to make the policy
inclusive for students with intellectual disabilities [Intellectual disability, Autism, AHSD, Learning
disabilities, neuro-development disabilities].
Recommendation:
a) Objective for students with special needs [Intellectual disability, Autism, AHSD, Multiple
disability] should be to stated in the Education policy to make it an Inclusive National
Education Policy.
3. Co-locating Pre-schools with Primary schools
Some pre-schools for children with special needs [today’s special schools] integrated with
primary schools can work in inclusive school format. Such integrated pre-schools continue to
focus on developmentally appropriate activity based training even after the age of 6 years. The
existing private and government run/ aided special schools be also incorporated in this
framework of integrated Pre-schools & Primary School. This would also provide option to the
child/ parent to select the most appropriate school between an integrated preschool and
mainstream pre-school, as given in Section 31 of Rights of Persons with Disability Act.
Recommendation:
a) All pre-schools, special schools (private or public) be placed under the National Education
policy to benefit from proposed innovative measures.
b) Attach existing special schools with primary schools for transition of students with special
needs in inclusive set up of primary schools, wherever feasible, and where requisite facilities
are available.
c) Special school can provide resources for children with learning disabilities in mainstream
primary schools.
d) All schools should have universal access and disabled friendly toilet should be compulsory,
as a policy.
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4. Safety & Security of Children with Special needs
One of the major reasons why the parents of children with special needs hesitate to send
children to school is safety and transport. Both should be arranged by local government. This is
not clearly stated in the policy.
a) Safety and security of children with special needs is crucial, and one of the reasons why
parents hesitate to send them to school. This should be explicitly covered in the policy.
b) Provision of transport with care taker for children with special needs to access the school.
5. Concept of School Complexes:
The concept of School Complexes to group neighboring schools (for administrative purpose)
with an objective to facilitate the sharing of resources and render school governance more local
flavor, effective, and efficient. The objective of Sharing of Resources will be better fulfilled if each
such school complex has a Special school included which will provide specialist care to the
students with disability studying in the mainstream. In addition such school will take care of the
special needs of students with intellectual disabilities requiring specific care in the below
mentioned abilities. The special school in the School complex can be considered as specialist in
i. Cognition & learning
ii. Social emotional and mental health of students
iii. Sensory & physical needs
iv. Communication & interpersonal interaction
v. Learning disabilities
vi. Para Olympics and Special Olympics sports training
Recommendations:
a) All students with special needs (their parents) get choice of school in the School Complex,
under Section 31 of Rights of Persons with Disability Act 2016.
b) Include pooled special school facilities for children with intellectual disabilities (moderate,
severe, profound) based on their learning potential without limitation on chronological age,
with in each school complex.
c) Special school & teachers act as special resources for all schools in the School complex.
d) All inter-school events and competitions should be inclusive. Special facilities to be provided
to students with special needs for competing in Special Olympics and Para Olympics local for
their respective age groups.
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6. School Governance & Engagement of community ownership:
For the success of educational endeavors it is essential to draw expertise of community
members and parents. As on date School Management Committees (SMC] are not effective
mainly due to the parents being inactive due to various compulsions. The parents [mothers] of
students with disability should be represented in all SMCs and SCMCs because they are the one
who get first-hand information from their child and understand their needs. These mothers
should be compensated for loss of daily wage and payment for transport for attending SCMC/
SMC. The mothers of students with special needs should be also employed as community
workers to assist the teachers for looking after the special needs of the students in the class.
Further the Zilla Shiksha Parishad (District Education Council) should have strong linkages with
District Level Committee (for empowering persons with disabilities).
Recommendations:
a. Parent [mother] of student with disability be included in SMCs and SCMCs and reimbursed
for transport and wage loss for each SMC/ SCMC meeting.
b. District Education council and District level committee for PwDs should have strong linkage
c. Preferential employment to mothers of students with special needs as resource person in the
school.
7. National Curriculum Framework:
The policy explicitly states that every student has innate talents which must be discovered,
nurtured, fostered and developed. This is most relevant for Students with Special Needs.
Therefore the curriculum development for children with special needs [Intellectual, Autism/
AHSD, Learning disabilities] must be differentiated while maintaining comparable milestones of
achievement, as with other students. This would support their education needs thru the age
while not necessarily considering their chronological age as the factor for achieving the
education milestones.
Recommendation:
a. Appropriate NOIS type curriculum for students with special needs but encompassing arts,
sports, computer graphics & art courses etc.
b. Special distance education/ home based education curriculum designed for students with
severe and profound disabilities for their sense of achievement.
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8. Vocational Education & Skill Development in school:
Vocational education and skilling has been given fair importance at curriculum of all stages in the
school education. The draft policy envisages to introduce vocational arts & activities such as
gardening or work with clay etc in the foundational years [6 to 10 years]. For children with special
intellectual and developmental needs [low moderate & severe and profound forming 56%] the
activities of daily needs [ADLs] is a skill set to be developed in & off the school timings. Therefore
for a special and inclusive set up these skills be considered as part of the developmental
curriculum for such students based on their initial assessment. We quote here the draft policy
section 4.6.8.2 which is very relevant for present and future social inclusion of persons with
intellectual and developmental disabilities.
Draft Policy Section 4.6.8.2 Using dustbins, using toilets and leaving toilets clean after use,
standing in queues properly and patiently, helping the less fortunate, being punctual, and always
being courteous and helpful to those around you in general even when you do not know them,
are basic values of social responsibility that will be taught and inculcated in students early and
throughout their school years.
Similarly while imparting knowledge of basic livelihood skills to students in the secondary school
the children with special needs may be given inputs of housekeeping, digital literacy, social
etiquettes appropriate to age, self-protection and social/ group interaction.
Recommendations
a. Soft skill training for children with special needs {intellectual, autism, AHSD, multiple
disabilities] be considered as pre-vocational and skill building training.
b. Vocations appropriate to capacity & competence of students with special needs be
introduced as integral part of high school curriculum.
c. Students with special needs should be able to pursue the vocational training and skill building
in secondary school and not restricted to chronological age.
9. Seeking collaboration of Departments:
The draft policy envisages strong collaboration among the departments of Women & Child
development, Health & Family welfare with Human resource department at every level. An
important stakeholder for Under Represented Groups [URG] is Ministry of Social Justice &
Empowerment / Department for empowerment of Persons with Disabilities (DEPwD) which is
tasked with implementation of Rights of Persons with Disabilities Act [RPwD Act 2016] having
component of education, vocational skill building of persons with disabilities. In addition the
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DEPwD has National institutes and composite regional centers (CRCs) under its fold that are
acting as fountain head of knowledge for education, vocational training & skill building of persons
with disabilities.
Recommendations:
a. Actively consult Dept of empowerment for PwDs/ MSJE in finalizing the policy to include
necessary provisions for children with special needs.
b. Close collaboration with DEPwD/ Samaj Kalyan vibhag/ CRCs at national, state, district and
taluka level for resource pooling and knowledge sharing during the implementation of policy.
10. Four years integrated education training for teachers:
It may be difficult for some students desirous to join teaching profession to go for a four year
under graduate course leading to B.Ed. Besides the teachers in preparatory school, Special
education, Arts & craft would need Assistant/ junior teachers. At Foundational & Preparatory
schools diploma level teachers will be required to act as assistant teachers as is practiced for
play group, early intervention support and experiential learning schools all over the developed
countries. This also helps to maintain lower student – teacher ratio required for these schools;
where the finance become a constraint looking at the fiscal realities. The policy should also
profess equitable pay scales for all B.ED teachers unlike the present situation where the Special
teachers are paid much less in the government aided and private schools as compared to
mainstream teachers. That is to attract the right potential for this stream which requires high
degree of ingenuity and perseverance to obtain desirable results. The present system of Special
education teachers and professionals providing services to students with special needs,
requiring registration with RCI should be done away. Because this becomes a starting point of
discrimination for students with special needs because other category of teachers [Foundational
& preparatory school teachers, Art & Craft teachers, Subject teachers, Physical training
teachers] will not be allowed to teach them for want of their RCI registration.
Recommendations:
a. Keep provision of 2 years Dip.Ed type course for resource persons in preparatory, pre-
primary level for maintaining low teacher – student ratio under budget constraints.
b. Resource teachers for children with special needs [cognitive, sight, hearing, non-verbal,
developmental, sensory] can be diploma trained (for specific impairment). Their purpose will
be to enable the student to become inclusive in the class room and school set-up.
c. Provision for lateral entry of persons with learning disabilities in teaching profession based
on their merit in a subject.
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NATIONAL CONFEDERATION OF PARENTS’ ORGANIZATIONS
Registered under the Societies Act 1860 Regn. No. S-30635 of 1996
Name of the Applicant Organization
Complete Address (with Pin Code)
Telephone Nos. (with STD code)
Mob No. Email:
Parent Association Professionals’ Association Voluntary Organisation
Registered under Society’s Regn. Act Regn. No. Date:
Registered under Public Trust Act Regn. No. Date:(Enclosed Copies of Regn. Certificates & a copy of constitution)Disability working for: PwIDDs
Intellectual disability
Cerebral Palsy Autism Multiple Disabilities
No. of Members : PARENTS & SIBILINGS: NON-PARENTS: PwIDDs
Name & Complete Residential Address (with Pin Code) of
President Secretary
Mob.No.
Email:
Mob.No.
Email:
Office: Office:
Category of Membership & Membership Fees (April to March)
One time lumpsum Corpus Donation of NOT LESS THAN Rs. One Lakh
One time Corpus Donation : Rs. 1000/- Corpus donation Rs 1000 + Annual FeeRs 1500 = Total Rs 2500 One time Corpus Donation : Rs. 1000/- Corpus donation Rs 1000 + Annual Fee Rs 1500 = Total Rs 2500
PATRON
MEMBER
AFFILIATE MEMBER
DECLARATION: We have read the Constitution of PARIVAAR and agree to abide by the same. Our membership shall be subject to approval by the Executive Council of PARIVAAR. If admitted, we shall work for fulfillment of the aims and objectives of PARIVAAR.
Enclosed One time Corpus Donation and Membership Fees of Rs.
in favour of PARIVAAR NFPA payable at Pune) dated on
(Bank)
in Cheque / DD No.
Application Recd. on ______________________Receipt No. ______________________ Date __________________
Treasurer’s Signature __________________Date ____________ Gen. Secretary’s Signature ___________________
Membership : APPROVED / NOT APPROVED BY E.C. on at the E.C. Meeting held at _________________________
FOR OFFICE USE:
Date: _____________Rubber stamp of the Association Signature of President/Secretary
PA R I VA A R
APPLICATION FOR MEMBERSHIP (Put tick mark wherever required)
Copy of NGO Registration certificate and Constitution must be submitted with this form
Membership No.
1.
2.
3.
4.
5.
6.
7.
8.
i)
ii)
iii)
9.
10.
Reply to: PARIVAAR, A-1, Green Acres CHS, Salunke Vihar Road, Pune - 411048. Email: [email protected]
C 4/5, S.D.A.I Floor, Opp. IIT Main Gate, NEW DELHI 110 016, Tel: 26964379
PLEASE ATTACH FOLLOWING DOCUMENTS WITH APPLICATION1. Society/ Trust registration certificate2. Registration certificate with state govt. dept for PwD3. Copy of Society constitution or trust deed4. List of members, tel no and indicating Parent or Non parent against each name
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2018 - 2019 ANNUAL REPORT
ORGANIZATIONS REGISTERED WITH PARIVAAR NCPO
2018 - 2019 ANNUAL REPORT
List of Activities : DC-Day care center, EIS- Early Intervention Services, GH-Group home or Hostel, PA-Parent awareness/ Advocacy, SA-Self Advocacy, SCH-School, WS-Work shop/ Vocational training, EMP- Employment training
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CENTRAL ZONE
MADHYA PRADESH
1 MP101 Indore Society for Mentally Challnged Indore 9827205554 SCH,WS
2 MP102 Parents Society of MP for Welfare of Persons