Parivaar Policies

Chapter 1: Introducing The Parivaar.

 

1.1     History & Context::      

          In India, the PwIDD’s have been by default deprived of the human rights and as a consequence they have not experienced the natural rights of exercising the legal capacity at par with other citizens in a democracy.  This has unfortunately not been recognized by the parents and community not to speak of the State.   As a matter of fact, the parents and community unintentionally make PwIDD too dependent for their daily activities and other developmental work with the assumption that they lack the functional abilities. However, during the past one decade, there has been greater awareness about the need to facilitate conditions for independent living as far as possible, but with least regard to the fact that rights are the cornerstone for development, which will lead to empowerment thus paving the way for independent living.  Independent living alone can bring improvement in the quality of life. However, quality of life without understanding the basic process of ensuring rights through development and empowerment will hardly change or improve, despite sincere efforts in imparting special education, vocational training and creating employment opportunities.

                                                                                    

        Majority of PwIDDs in India is, as of now, identified after 4-5 years’ of age and after taking the child to medical doctors for treatment considering it as disease.  By the time, they are brought to the disability rehabilitation specialists; the children usually have lost great opportunity of early intervention because parents lack knowledge about early intervention. They are however placed in special schools if it is an urban area and in case of rural area, most of them do not have any rehabilitation services.  Inclusive education is unknown to many and therefore a distant dream. These services are provided to PwIDDs without informing of the intervention actions and outcomes.  They are simply sent to the rehabilitation centers.

 

         They (PwIDDs) are mostly treated as dependent persons who need protection.  Informed consent in matters relating to health issues is an alien subject to parents. During Parivaar’s self advocacy training programs, it has been revealed that with least regard to their desire, they are medically treated by doctors who are not liked by them.   Most of the PwIDDs do not handle money directly and they are at the most given little money to meet expenses of specific items, like bus charges, food charges etc.  PwIDDs do not have opportunity to do shopping on their own.  They are, therefore, subjected to passive life. 

 

        Parents of children with intellectual and developmental disabilities have been the most influential factors in the education and the delivery of services.  Over the past decades parent groups have been described as the trailblazers in the crusade to win acceptance of their children as equals and their rights as indivisible. These organizations have gained strength through painstaking and after self-sacrificing efforts.  Parents have lobbied for legislation and policies and initiated community services.

        Elsewhere in the world, as early as 1930, parents began to unite and bond together to share problems and to seek answers for the education and care of exceptional children.  In India, the parent movement has started as early as 1964 in Mumbai, 1968 in Ahmedabad, Gujarat State, followed by another in 1978 in Bangalore, Karnakata State. National Institute for the Mentally Handicapped, from as early as 1986, has been advocating and supporting formation of parent organizations.  Gradually, it has become the mentor of the parent organizations and has guided them to federate nationally so that collective strength and synergy would make it a very vibrant, robust and sustainable national level body, which has become a reality by 1995.

1.1.1 Parivaar – National Parents Association:

Pairvaar – the National Federation of Parents’ Associations (NFPA) for persons with Mental Retardation, was formed in the year 1995. At present It is a Federation of over 200 Parents Associations and NGOs in 30 States of India working. When it was launched, there were only 22 parents Associations were its members.  Later, in 2002, Parivaar amended its constitution and extended its scope to work for all the four disabilities covered by the N.T. Act 1999, namely: Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. Parivaar is a grass-root level organization with 110 urban 52 semi-urban and 38 rural parents associations. Its vision, mission and objectives are importantly to create awareness and advocating for inclusion of PwIDDs as contributing members at par with others. Creating   inclusive and protective and lobbying for improving their quality of life environment.

 

1.1.2 Networking and alliances:

            Parivaar believes in co-existence and co-operation. In this direction, it has always extended hand of cooperation to others in the development sector and some important partners are:

·         The national co-ordination committee of DPOs.

·         National Human Rights Law Network.

·         National Trust, Government of India.

·         NGOs working in the area of PWIDD.

·         The local level committees constituted under the National Trust Act.

·         CBM

·         DRF

·         Inclusion International

·         National Institute for the Mentally Handicapped

·         National Institute for the Empowerment of the Persons with Multiple Disabilities.

 

1.3   Strategic Directions:

        Democratic and participatory approach has been adopted in which all the stakeholders have been involved in the process of developing the strategic plan 2030.  The entire process has been backed up with scientific inputs in an objective manner.  The process had the benefit of Executive Body’s critique and inputs before it was tabled before the General body.  This process helped filter the essence and allow for broad-based input acquisition.

       Strategic plan prepares the organization to meet the challenges in ever changing scenario in the society extending to long range of 10 years, short term of 3 years as well as annual plans. The strategic plan also takes into account the needs as articulated and analysed above. Such strategic plan is developed to have an inbuilt mechanism of review and evaluation of organization and environment to ensure capacity development and enhancement of capabilities of appropriate levels.  The strategic direction framework is depicted as under:

 

Major Area

Functional/Operational  Area

Issues/Aspects/Results

Delivery

Programs

Networking and Strengthening families; Legal capacity, capability enhancement, Inclusion and empowering PwIDDs on rights mode.

Process

Process standardization, best practices; benchmarking; modalities of functioning

Monitoring & Evaluation

Transparency; accountability; Objectivity; Impact studies; Outcome indicators; Development Index.

Development

Planning

Improvement plan; Road map; Long Range Plan, Mid Range Plan, Annual Plan, Sectoral and Module Plan.

Organization

Organizational structure; Authority in the organization; Decision Making, Accountability, Ownership;

Management

Effective Teamwork or better coordination; Bench mark, best practices; Quality Management, Insider Client Delight, Stakeholders’ delight; Change management; risk management

Communication & Branding

Inside communication; branding of Parivaar, Involvement of all stakeholders;

Collaboration and partnership

Building alliances; Associates’ cooperation, joint initiatives with partnership, Representation in Government Committees

Discovery

Action Research

Service models, Contributing to public policy and law; Developing Models, Knowledge Resource Module

Surveys

Global statistics, locally generated statistics, incidence and prevalence, environmental impact analysis, Mechanism for situational analysis and action plan;

Documentation

Management Information System

Data bank, generation and submission of various critical and functional reports to be made available and accessible at all times.

Publications

Project Reports, Manuals, Papers, study reports, periodicals, newsletters and journal

Dissemination

Information Sharing

Internal communication

Website

External communication

Article publication

Knowledge sharing

 

Chapter 2: The Organisation.

2.1 The Parivaar background and structure:

2.1.1    Genesis:

 

It is a well known stand that parenthood is the major cause for the parents to join hands as cooperative groups in the beginning.  It has become a platform for sharing the woes, joys and sorrows learn experience. It has grown into a support to meet the minimum needs of PwIDDs and parents.  Considering the critical nature of such parent groups and seeing some successes, a strong need was felt to see something more is happening than what had been done so as to strengthen the voice, secure synergy, expand network, enhance the volume of membership, to ensure betterment of the children and social security,

 

Over a period, the associations of parents gathered momentum as a result of awareness programs, which empowered the parents with ample information so as to realize the objectives of rights and inclusion.  Then in 1996, the dreams of parents had transformed into reality and there took birth Parivaar, for larger cause of PwIDDs and their families.   It assumed the role of bringing about attitudinal changes in the society as well as in Government which positioned Parivaar as strong advocate, national leader, public policy modulator and as the largest organization of parent associations not merely in our country but also abroad.  In due course, it has extended support to individual parent organizations to find ways and means to face insurmountable challenges. One of the key factors for the parents to form groups is the fact that they have major stakes in the entire process of rights, inclusion and empowerment as PwIDDs do have limitations in protecting their rights, articulating to access in the inclusion process and securing empowerment. Parivaar has understood very clearly that this message has to be spread throughout the country.  Parents have great hopes and confidence in Parivaar as their mentor, protector and support.

 

2.1.2    Governance:

 

Ad hoc committee was formed under the Presidentship of Shri Mathias in 1995 and was, subsequently, registered as Parivaar on 16th December 1996. All the required structures of an organization were formed.  The 1st General body meeting was held in Bangalore on 4th November 1996, and an elected body was constituted under the presidentship of Shri J.P.Gadkari.  It was then functioning at KPAMRC premises, which even now continues except for the years 2000-2002, when Dr.H.T.Dholakia was the President. In November 2000, the constitution was amended to include all the four disabilities viz., autism, cerebral palsy, mental retardation and multiple disabilities after the National Trust Act came into force.

 

Again the constitution was amended in the General Body meeting at Bangalore on 4th February 2006 transforming into Federal constitution having the title of National Confederation of Parents Organizations for persons with mental retardation, autism, cerebral palsy and multiple disabilities (NCPO).

 

However, the general body of Parivaar has also decided to keep the amended constitution in abeyance till such time as all the States coordination committees are registered as State Federations.  On 26th January 2010, the General Body held at Cochin has decided to bring into force the amended constitution with immediate effect. As a result, many States had formed Federations with respective State Committees, and affiliated with Parivaar. However, those States where the State Federations have not been formed yet, the member organizations are directly affiliated to Parivaar committing to form State level federations.

 

Advocacy, awareness and sensitization programs have formed the majority of the activities of Parivaar, apart from formation of parents’ associations and self-help groups for livelihood programs.  In the process, National Parent Meets, State level conferences, regional parent meets and Parivaar newsletter are some of the important activities aiming at advocacy, awareness and sensitization. Parivaar also undertook capacity building and self-advocates training programs. Formation of self-advocates’ groups in every State (Self-Advocates’ Forum of India – SAFI) has been undertaken in right earnest. 

 

2.1.5 The Parivaar Structure:

President, Parivaar, will manage the functions and operations of Apex Office. The Parivaar Apex Office is the central/corporate of Parivaar which has the Executive Council as its supreme authority of Parivaar to be advised and supported by Core Committee. The Core Committee will consist of Chairperson, President, General Secretary, 5 Vice Presidents and Technical Advisor. It is the privilege of the office bearers to select the Chairperson who should be at least member of Executive Council. The Core Committee will ensure gender just in the composition.  Parivaar Management Module will be placed in the charge of one Vice President/Integrator who will act as Module Leader (FLCL).  The treasurer will take charge of Parivaar Financial Management and Accounts Initiative as the Partner.  Four of the Zonal Secretaries will assume charge as Module Leaders (FLCL) of the remaining modules. Remaining members of Executive Council including the Zonal and Joint Secretaries will lead each Initiative as Partners. 

The Core Committee is designed to offer capacity and counter deficits.  It should lead to smarter and more effective policymaking and effectively link research and policy.  It seeks to better connect the best research capabilities to the most challenging development problems.  Policy-relevant research concerns in three ways.  First, advice on improved policy to meet rapidly growing needs of PwIDDs and their parents. Second, Parivaar, a fast-growing National leader should serve as model for other countries.  Third, Parivaar can be a world class resource to share with others. Notwithstanding these, Core Committee’s major role will be developing capacities and search for solutions to various issues and concerns of Parivaar.  It will guide Parivaar in planning, execution and monitoring and evaluation.  Core Committee is also expected to mobilize funds for research and development for Parivaar.

2.2 Parivaar Network & Zonal/State & District Level Offices & working relations:

Every Zonal/Regional office (covering 4-5 States) and State Office will also have similar organization and structure to extend support and execute the programs and projects which are allocated by the Central Office.  The Zonal/Regional Office will enjoy federal character while discharging its integral role of the central office.  As a federal organization, it has the freedom of securing its own projects and drive programs also. In other words, each Zonal/Regional Office is a leader in its own right and for the Zone/Region, while adhering to the need of being an integral part of central organization.  The organization at this level will have similarly five modules as it has been designed at the central level, having similar initiatives working in each module. While the initiatives at the central level will work as separate wings, the activities and programs of these initiatives will be carried by the zonal level modules in an aggregate manner till it is deemed necessary to organize separate wings at a later date.

At District and unit level, the functions and operations will mainly concentrate on Programs and Services, for which, the District will be autonomous in driving such programs.  However, if there is allocation of such programs and services from Central Office or Zonal/Regional/State office, District will assume the responsibility as co-owner.  District office will take up such Projects and Development works as assigned by the Central office.  District will maintain an organization with staffing required for organization management and program implementation.  There will be distinctly two divisions in each district office, looking after management and administration and implementation of programs and services.

Stakeholders

 

The Parivaar seeks to achieve its vision by involving a wide spectrum of people. The

various groups with whom the Parivaar engages are explained below:

 

Stakeholder segment

Description

PwIDDs

One whom Parivaar renders its services.  Parivaar does not discriminate on the basis of religion, caste, gender, age etc., while serving the Persons with intellectual & development disabilities.

Parents

As members of Parent Organisations, they are eligible to get elected as office bearers.  They are the partners of the parivaar and hold critical stakes in the Parivaar.

Parent Organisations

A body formed by 5-6 parents to take care of the interest and protect the rights, ensure inclusion and empowerment of the PwIDDs and support, counsel and guide the parents, siblings.  Each parent organisation has the responsibility of ensuring its own expansion  as well as promoting Parent organisations within its vicinity.

Parivaar Vikas Samiti

A body constituted within and at district and state level with the community members including persons with disabilities and other disadvantaged groups and this will support and guide the Parent organisations in the transformation process as per the Parivaar’s design.

Donor/Funding organisation

One who provides financial resources, could be a regional, national or international entity.  May be an individual, funding agency, corporation, government, etc.

Alliance partner

Institution/organisation with which the Parivaar enters into a collaboration for delivery of services or for developing solutions.

Change Agent

One who voluntarily provides expertise, time and relationships.  Is drawn from working professionals, retired professionals, homemakers and students from the community or otherwise.

Government

Includes the various arms of the local, state and national governments.

Partner

Employed by the Parivaar to lead one or more initiatives. Professional group whose principal responsibility is to create soft infrastructure or body of knowledge.  Interact with one another in a non-hierarchical manner.

Integrator/Lead Partner/Head

Employed by the Parivaar or nominated from among the parent members to lead one or more modules. Professional group whose principal responsibility is to create soft infrastructure or body of knowledge.  Interact with one another in a non-hierarchical manner.

Associate

One who extends service and development support to the partners/integrators.

Module Board

3 to 5 member boards for every module carefujlly selected for their expertise in the corresponding domain.

Patrons’ Presidium

Eminent persons who share the Parivaar’s vision and values and whose association enhances the Parivaar’s stature.

General Body

A body consists of all the members of the Parivaar. Meets once a year to decide policy issues and evaluates the performance. 

Executive Committee

A body consists of the elected members as per the Parivaar’s constitution and executes the programmes as per the vision and goals.

Core Committee

A body to think, analyse, plan, design and develop and evaluate programmes.  A critical arm of the executive and general body as the mentor and guide.

Office bearers

The elected members to guide and steer the Parivaar as per the vision and goals.

Society

General community

 

3.3    Parivaar General Assembly

a) The General Assembly shall consist of representatives designated by Members and Affiliated Members. The Hon. Members and Patrons shall also be the constituents of the General Assembly, but without voting rights.

b)         Each State Federation may designate not more than two members as representatives to the General Assembly but only the parents’ association members will be eligible for voting.

c)         A regular meeting of the General Assembly shall be held every year at which the General Assembly shall when due, elect the President of PARIIVAAR and members of its Executive Council for a three-year term and transact such other business as may be necessary. The General Assembly may, at other times, meet in extraordinary session at the call of the president or requisition by a majority of members of the Executive Council or on a requisition by not less then twenty five members of the General Assembly, in good standing.

d)         The General Assembly shall establish general policies and procedures of PARIVAAR, review all actions and decisions of the Executive Council, and serve as final forum on all matters pertaining to the rights of the members and interpretation of the Constitution.

e)         At each regular meeting of the General Assembly the conduct of business shall be in the following order:

i)          To read and approve the minutes of the previous meeting.

ii)         To receive consider and pass the report and accounts for the previous year.

iii)         To appoint or re-appoint auditors and fix their remuneration.

iv)        Election of the President and members of the Executive Council when due.

v)         To consider and vote upon resolution notified in the Agenda.

vi)        Any other business with the permission of the Chair.

 

f)          At any Extra-ordinary session of the General Assembly the business to be transacted shall be restricted only to the agenda actually circulated.

 

3.4   Parivaar Executive Council

 

a)            The Executive Council shall consist of the President and not more than 40 Councillors elected by the General Assembly who shall serve as representatives of the General Assembly as a whole and not representatives of member organizations. The Executive Council shall be representative of the various parents’ associations/Institutions / States of the country. Not more than two Councillors, excluding the President and the General Secretary shall be from the same state. Upto five (5) co-opted members and upto five (5) Technical Advisors (who shall not have voting rights) shall also be members of the Executive Council, but shall not be counted in the total strength of 42 members of the Executive Council.

 

b)         The Executive Council shall meet at least twice a year, if possible, at the call of the President or when a majority of the members of the Executive Council may determine. The time and place of meeting shall be determined by the President and General Secretary on the Advice of the Executive Council.

 

c)         The Councillors shall be elected for a term of three years and may be re-elected.

 

d)         A majority of members of the Executive Council shall always be Parents/Guardians/close family members of mentally retarded and of persons with autism, cerebral palsy, multiple disabilities, or self advocates, if nominated by Member Associations.

 

e)         The Executive Council will be the responsible organ of the General Assembly to manage the affairs of PARIVAAR during the interim period between meetings of the General Assembly. The Executive Council shall have and exercise all the authority and duties of the General Assembly except the authority specifically reserved for the General Assembly.

 

FUNCTIONS AND POWERS OF THE EXECUTIVE COUNCIL shall be as under:

 

a)         To raise financial resources and manage all the assets and funds and to conduct and manage all the activities of PARIVAAR.

 

b)         To appoint employees and / or engage the services of contractors, to settle the terms of their employment or engagement, and lay down conditions for their termination.

 

c)         To file and/or defend suits on behalf of PARIVAAR, to compound suites or to refer any differences of disputes with third parties for arbitration.

 

d)         To seek advice and / or opinion from lawyers, chartered accountants, rehabilitation professionals and other specialists.

 

e)         To invest funds of PARIVAAR in approved securities or bank deposits.

f)          To acquire immovable (including agricultural land) and / or movable assets as may be required for fulfillment of the objectives of PARIVAAR.

 

g)         To alienate investments of consideration.

 

h)         To open bank account and operate the same jointly by Treasurer, President and Gen. Secretary authorized by the Executive Council.

 

i)          To issue receipts for any moneys, securities and the documents received on behalf of PARIVAAR.

 

j)          To accept and receive in any manner any cash or movable or immovable property either unconditionally or subject to conditions as may be approved by the Executive Council, as per the guidelines laid down by the General Assembly.

 

k)         To solicit, obtain or accept donations, grants, gifts, for persons with multiple disability, or self-advocates, if nominated by Member Associations, alter, expand, repair or modify any such existing assets.

 

l)          To acquire through gifts, purchase, exchange, lease or hire or otherwise howsoever any land, buildings, apartments or rights to any movable or immovable property.

 

m)        To sell, transfer, exchange, mortgage, demise, dispose off or otherwise deal with any property belonging to PARIVAAR.

 

n)         To draw, make, accept, endorse and discount cheques, notes or other negotiable instruments.

 

o)         To enter into any arrangement with any government, individual or corporate entity or local body, as may be conducive to the objectives of PARIVAAR.

 

p)         To keep proper account of all sums of money received and spent by PARIVAAR and to have accounts audited every year as prescribed by law.

 

q)         To accept and manage any Trust Fund or Endowment which assists in furthering the aims and objectives of PARIVAAR accepted from anybody.

 

r)          To pay affiliation fees or membership fees to allied Organizations in India or abroad.

 

s)         To make available grant of money or other assistance to any member organization / association engaged in promoting schools / vocational centres / homes / day care / respite care centre / community living and institutions etc., working for the welfare of persons with mental retardation, autism, cerebral palsy and multiple disabilities.

 

t)          To appoint sub-committees for discharging jobs specified service in furthering the aims and objectives of Parivaar, as and when deemed necessary by the President / Secretary.

 

u)         To borrow money which may be required for PARIVAAR in such manner as may be deemed fit, including hypothecation, mortgage, etc., of the assets of PARIVAAR and settle the terms for such loans.

 

v)         To select persons, whether Executive Council members or not, for representing PARIVAAR on statutory and / or non-statutory bodies appointed by the Central or State Government and / or any local bodies like Zilla Parishads and / or gram Panchayats, etc.

 

w)        To formulate schemes for giving appropriate recognition to persons with mental retardation, autism, cerebral palsy and multiple disabilities, and others who have rendered meritorious service for the welfare and rehabilitation of persons with mental retardation, autism, cerebral palsy and multiple disabilities.

 

x)         In general to manage the affairs and activities of PARIVAAR and generally to do all such things, take all such actions, incur all such expenses and execute all such documents, whether specifically enumerated in the foregoing or not, as may be proper, necessary or expedient for carrying out the aims and objectives of PARIVAAR and / or for compliance with statutory requirements.

 

y)         To accept trusteeship of mentally retarded person or persons with cerebral palsy, autism, multiple disabilities, and arrange for their placement with suitable residential or Day Care homes.

Z)         To co-opt upto five (5) persons from the General Assembly as members of the Executive Council for a period of three (3) years and to appoint up to five (5) persons with knowledge and experience in any discipline as Technical Advisors for a period of three (3) years at a time.

3.5  Parivaar Core Committee

 

3.5.1      Constitution

 

The President in consultation with the General Secretary and Vice Presidents will form Core Committee, which will have not more than nine members including the President and the General Secretary as its members.  Besides, the Core Committee will have the privilege of the consultant’s presence as special invitee.

 

3.5.2      Responsibilities

 

The Core Committee will meet at least once in a quarter to discuss and advise the Executive Council/President on the following areas:

 

-       Promotion and growth of Parent Organisations by activating and supporting the Parivaar Vikas Samithis.

-       Develop Long Range Plans.

-       Appraisal of the legislative provisions as per the UNCRPD and bring changes in public policy.

-       Play major role in implementing the Parivaar Leadership Succession Plan.

-       Conscience Keeper of the Parivaar in running the organisation according to Vision, Policy and Procedures.

 

3.12 Child Protection Policy

  • Parivaar recognizes that all children due to their age are considered to be at risk for exploitation, abuse, violence and neglect.

According to the Integrated Child Protection Scheme (ICPS) Child Protection is about keeping children safe from a risk or perceived risk to their lives or childhood. It is about recognizing that children are vulnerable and hence reducing their vulnerability by protecting them from harm and harmful situations. Child protection is about ensuring that children have a security net to depend on, and if they happen to fall through the holes in the system, the system has the responsibility to provide the child with the necessary care and rehabilitation to bring them back into the safety net.

Parivaar is committed to ensure child protection and child rights and therefore has made it mandatory to include this in all its advocacy and awareness programmes.  Parivaar is also committed to take appropriate action and use services of various agencies engaged in child protection and child rights, whenever and wherever its member organisations and staff come across any case of child exploitation.

It is the responsibility of Heads/Integrators of all Modules and Incharges/coordinators of all Initiatives to make the child protection and child rights as part of every programme/project undertaken by Parivaar. Therefore all Parivaar Leaders at the National, State, District and Association level, all staff, volunteers associated with Parivaar should subscribe to the Child Protection Policy and sign the Code of Conduct. (See Parivaar CPP Manual)

Parivaar Executive Council will review and monitor the status and/or the action taken by all concerned in respect of child protection and child rights.

4.6.1 Individual responsibilities and authority levels.

 

President (Band 1)

 

On a day-to-day basis, authority for managing the Parivaar is delegated by the General Body to the President.  The President has wide-ranging responsibilities over the development of the organisation’s strategy, work plan and budget, for negotiating agreement with donors and programme partners, for initiating new programmes and for managing staff.

 

Director (Band 1)

 

The President is supported in his tasks by Director (P&D) and five Module Directors.  The five Module Directors will report to the Director (P&D) who is in turn accountable to the President.  The five Modules are : Parivaar Services Module (PSM), Parivaar Projects Module (PPM), Parivaar Innovation & Knowledge Module (PIKM), Parivaar Technology Module (PTM) and Parivaar Management Module (PMM).  President and Director (P&D) will additionally hold as a team the portfolio of Policy and Communication & Branding. Together, the President, Director (P&D) and the five Module Directors constitute the Senior Management Team (SMT).

 

Key responsibilities of directors include:

 

·         Overall responsibility for the development of their Module’s strategy, workplan and budget

·         Leading the Module and line managing Partners/incharges of Initiatives

·         Ensuring collaboration and communication of information within and across modules.

·         Representing the Parivaar at a senior level and maintaining donor relationships globally.

·         Responsible for driving metrics of 6Ps and monitoring and extending support to achieve 5Rs.