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Advocacy and Lobbying

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Title: Advocacy and Lobbying


1
Advocacy and Lobbying
future
Project Partners Meeting 2007
C. Mahesh CBR Forum, 14, CK Garden, Wheeler Road
Extn, Bangalore 560 084 Tel. 080-25497387 or
25497388, cbrforum_at_blr.vsnl.net.in advocacy.cbrfor
um_at_gmail.com
2
Understanding Disability
  • Disability as a deviation from the normal in
    the physical, mental, psychological or sensory
    areas of functioning is popular especially with
    doctors/ rehabilitation professionals
  • This understanding is limited to the individuals
    medical condition

3
The question is Who defines?
  • These definitions based on only the medical
    condition/ functional limitation have been
    challenged by people with disabilities
  • Defining disability has gone beyond physical/
    sensory or other bodily limitation

4
Understanding Disability issues as Human Rights
  • disability is the disadvantage or restriction of
    activity caused by a society which takes little
    or no account of people who have impairments and
    thus excludes them from mainstream activities
  • Therefore, like caste or sexism, disability is
    described as a consequence of discrimination and
    disregard

5
Understanding Rights
  • Disability is simply not lack of sight/ hearing/
    walking it is rather denial of the basic
    entitlements (basic rights) in life (health,
    education, livelihood, dignity, choice,
    opportunity)
  • The strategy is therefore about both rights and
    realization of the rights through equal access to
    services and opportunities

6
Rights Based Approach
  • Any human being is holder of rights
  • Obligation on the part of the state to respect,
    protect and fulfill it
  • It is just not charity or economic development
    but a process of enabling and empowering those
    who do not enjoy the economic, social, cultural
    and political rights to claim their rights
  • It is a process of creating better human beings
    who are self confident, capable and responsible
    citizens.
  • Making use of the Laws - to protect your rights

7
A Right to be part of
  • Disabled people also have the right to be
    healthy
  • We also need to have access to education and
    livelihoods
  • We also need to have a freedom of choice, to
    make decisions and live with dignity
  • Somehow or other We are not included in the
    movement and programmes for HEALTH FOR ALL or
    EDUCATION FOR ALL

8
Rights Based Approach
  • Opportunities in current changing environment

9
Millennium Development Goals By 2015
  • Eradicate extreme poverty and hunger
  • Achieve universal primary education.
  • Promote gender equity empower women
  • Reduce child mortality.
  • Improve maternal health
  • Combat HIV / AIDS, Malaria other diseases.
  • Ensure environment sustainability
  • Develop global partnership for development.

10
Biwako Millennium Framework Asia Pacific -
2003-2012
  • Towards An Inclusive, Barrier-Free And
    Rights-Based Society

11
UN Convention on the Rights of Persons with
Disabilities (UNCRPD)
  • All human rights and freedoms of all people with
    disabilities are enjoyed, promoted and protected
  • The dignity of people with disabilities is
    respected

12
Convention on the Rights of Persons with
Disabilities
  • Adopted on 13 Dec 2006 during the 61 session of
    the UN General Assembly
  • So far 115 countries have signed this convention
  • 30 Mar 2007 India along with 95 other countries
    has been amongst the first counties to sign this
    convention
  • 2nd Oct 2007 India is the first country in South
    Asia to Ratify this Convention others 5 being
    Jamaica, Hungary, Panama, Croatia and Cuba

13
What do we hope from UNCRPD?
  • Increase the visibility of PWD, both within the
    UN human rights system and in society
  • Clarify the human rights obligations of
    governments to PWDs, and ensure that governments
    like ours, make legislative and programmatic
    changes at various levels to implement their
    legal obligations under the convention
  • Establish systems for comprehensively monitoring
    the human rights situation of persons with
    disabilities around the world
  • Establish systems for international cooperation,
    through which governments, disability
    organizations and other actors can share
    knowledge and ideas and work together to improve
    the lives of PWDs.

14
Closer home
  • The Constitution of India - Art. 21 Protection
    of Life and Personal Liberty Art. 41- effective
    provision for securing the right to work, to
    education and public assistance
  • The Persons With Disabilities Act, 1995
  • National Trust Act
  • Right to Information Act
  • 11th Five Year Plan 2007-12 Working Group
    -Empowering PWDs

15
To sum up
  • The key words of the Declarations/ Policies
    presented above are centred around rights,
    equality, respect, dignity, inclusion as equals,
    participation, freedom of choice, addressing
    poverty, self-dignity

16
Exploring Opportunities/ Avenues for Advocacy/
Lobbying
17
Exploring Opportunities/ Avenues for Advocacy/
Lobbying
  • At GP/ Taluk/ Block/ Mandal/ Dist./ State
  • By SHG/ Federations/ CBR Forum with/and its
    Partners
  • The primary focus is confining to the poor

18
A brief review of.
Policies, Programmes - Opportunities and
Critical Gaps to be addressed
19
Policies, Programmes - Opportunities and
Critical Gaps Some of the areas covered
  • Education
  • Health
  • Livelihood
  • Social/ Cultural participation
  • Political participation
  • Advocacy/ Empowerment

20
1. Education
  • Policies, Programmes - Opportunities and
    Critical Gaps

21
Education Positive Outcomes
  • SSA is a great thing that is happening
  • Education department has started owning the
    education of CWD in the Education for ALL
    campaign
  • There has been huge enrolment of CWD is rural
    area primary schools
  • There are different models of enhancing inclusion
    of disabled children in the primary education
    system which is being practiced in different
    states

22
Some challenges Children who are able to access
school
  • Retention and quality of education
  • Making the education system and school inclusive
    the prevailing perception is Education of CWD
    is the responsibility of SSA and not of the
    school
  • There is a need to focus on providing support and
    building capacity of the teacher/ school rather
    than only supporting the child with disability by
    Resource Teachers (CRP/ BRP/ DIET/ SCRT)

23
Some Challenges Cont Children who are able to
access school
  • Apart from children with locomotor disability,
    the schools are facing problems in education
    with all the other categories.
  • There is lack of appropriate educational
    materials/ TLM/ strategies
  • (aids and appliances addresses the need of a
    limited few and cannot solve the problem for all)
  • There is a need for - Inclusion of education of
    disabled children in the mainstream teacher
    training courses
  • The current education system is not child
    centered and there is limited/ no involvement of
    family and community

24
Some Challenges Children who are not able to
access regular school
  • No clear cut strategy for the Home based
    approach? Who decides?
  • Home based - being addressed sporadically through
    NGOs/ volunteers
  • Home based There is ambiguity in the purpose of
    education
  • There is need for emphasis on life skills and
    functional education and involvement of the
    family and community in the process
  • The fact is the child who requires greater
    support gets the least

25
Challenges Before Elementary Education
  • Inclusion of children with disabilities in ICDS.
    Is it happening?
  • The inclusion is sporadic and policy level
    decisions needs to be framed and implemented
  • Here again, the child who requires greater
    stimulation gets the least or is referred to a
    hospital

26
Challenges beyond Elementary
  • A large number of children who go up to class 8
    find it difficult to go beyond
  • Secondary (class 8) and Higher education eludes
    many, more so in cases of girls

27
Challenges Need to re-look Roles
  • ? Can Special schools play a proactive role in
    enhancing integration/ inclusion of children with
    disabilities in the mainstream
  • ? CBR Workers role in Education
  • ? The role of Min. of Human Resource Development/
    Education Dept.
  • ? The role of Min. of Social Justice and
    Empowerment
  • ? The role of RCI

28
SSA
  • SSA scheme ensures admission but what after?
  • What is our role as NGOs to ensure effective
    education for CWDs?
  • Inclusion seen at various levels physical
    inclusion looks at accessibility social
    inclusion cares for participation in various
    school activities

29
2. Health
  • Policies, Programmes - Opportunities and
    Critical Gaps

30
Health Overall Challenges
  • Many of the disability related health needs are
    addressed by the Dept. of Social Welfare rather
    than the Dept. of Health for example
    certification, rehabilitation services/ devices

31
Promotion and Prevention
  • Lack linkages to Disability in the Promotion and
    Prevention progammes
  • Disabled people by design are not included in all
    the programmes Example immunisations,
    adolescent and reproductive health, HIV/AIDS,
    TBNRHM
  • (Many organisations run separate awareness
    programme for disability rather than including
    disability components in the existing mechanisms
    of the Health Dept.)

32
Promotion and Prevention
  • In the RCH programme Adolescent health is one
    component in the sensitisation programmes of
    the adolescents generally disabled adolescents
    are not included. Why? Are disabled adolescents
    sexless?
  • ICDS ICDS is supposed to provide nutrition
    supplement and developmental stimulation to
    children. Yet in many instances children who are
    developmentally delayed and need more stimulation
    than others are excluded. Is it not my right to
    get this basic entitlement like other children?

33
Promotion and Prevention
  • HIV and AIDS is one of the big programmes of the
    health sector sensitisation of the general
    population on prevention aspects happens to be
    the major component yet again in many of these
    programmes disabled people are not included.
  • Some of the means for creating awareness like
    hoardings- when designed doesnt reach some of
    the disabled people.
  • Are disabled people not at risk of having HIV and
    AIDS?

34
Curative Health
  • Lack of appreciation that disabled peoples
    health needs are same as others Disabled
    peoples health needs are perceived as specific
    to their disability Example cases of
    diarrhoea referred to Dist. Hosp., delivery
    referred to specialised centres
  • Lack of physical access
  • Lack of access to information

35
Rehabilitation (Health)
  • Rehabilitative services related to health are
    very limited
  • All major rehabilitative needs are not addressed
    by the Department of Health. And MSJE should not
    try to continue to address this gap

36
Health Women with Disabilities
  • Are disabled women part of the womens health
    programmes?
  • Health needs specially for Women with
    disabilities is not addressed appropriately
  • Even, specific health progammes related to Women
    does not mention/ address the needs of women with
    disabilities

37
Drinking Water and Sanitation
  • Safe drinking water and toilets are one of the
    basic needs of any human beings.
  • When drinking water facilities are being created
    in the village / slum does one keep in mind
    that disabled people also can access the water
    like others?
  • In most instances the toilets are designed in a
    manner that they are inaccessible to many
    disabled people (both public and at home)

38
Drinking Water and Sanitation
  • Do disabled people have Equal Access?
  • Right to privacy especially for women are often
    not respected.

39
Enhancing access to services
  • Health interventions have a limited role in
    disability but it does play an important role
  • At times there is no clear-cut demarcation where
    heath intervention stops and others start
  • Most people who have any condition that may lead
    to disability are generally referred to the
    district civil hospital.

40
Enhancing access to services
  • For many a large number of poor people it is
    always not practically possible to go to the
    district.
  • And even when some do reach the district hospital
    in many instances there are no specific services
    (eye, ear, mental health..) available for them
    certificates
  • Enhancing services benefits all

41
Need for greater sensitivity
  • Some appropriate words of acceptance, support,
    encouragement and facilitating linkages with
    other developmental activities can make many
    lives. There are no medicines to cure this.
    Your child should go to the local school. Have
    you registered yourself in the employment
    guarantee programme Yes you could work.
  • Most people (including health personnel) do not
    interact directly with people with disabilities
    What is her problem?

42
The Gaps
  • In the PRI the standing committee on health
    does not include health of disabled people.
  • In the NRHM there is not a single word about
    people who are disabled
  • Why cant the ASHA (Accredited Social Health
    Activists) also help the disabled population
    especially disabled women to be included in the
    NRHM. ASHA can help disabled people to access
    health facilities and assist in the process of
    certification. Why not?

43
The Gaps
  • The Ministry of Social Justice and Empowerment is
    the nodal ministry of disability. In the states
    it is usually the ministry of Social Welfare.
  • Why are health related services like aids and
    appliances for better mobility are primarily not
    under the health department?

44
3. Livelihood
  • Policies, Programmes - Opportunities and
    Critical Gaps

45
Livelihood
  • Policies are there for inclusion for PWDs in
    existing poverty alleviation programmes which
    include SGSY, SGRY/ NREGA(?), PMRY, Antodaya,
    Annapoorna
  • However, lack of appropriate strategies and
    information for inclusion of PWDs have resulted
    in inadequate utilisation of these provision
  • Implementers at various levels have limited
    awareness of the potentials of PWDs (including
    PWDs themselves)

46
Livelihood
  • SGRY (Sampoorna Grameen Rozgar Yojana) - 3
    reserved for PWDs under utilised
  • SGSY (Swarnjayanti Gram Swarozgar Yojana) through
    SHG - 3 reserved for PWDs under utilised How
    many PWDs are in SHGs? How many PWDs SHGs have
    linkages with SGSY?
  • NREGA Strategies of inclusion of PWDs is not
    made explicit

47
Livelihood Skill Training
  • SGSY - How many PWDs are there in the skill
    training programmes organised by DRDA?
  • PWDs not part of mainstream skill development/
    vocational programmes (agriculture and non
    agricultural)
  • Skill training provided in secluded and
    conventional trades
  • Are not in tune with current market trends

48
Livelihood
  • Despite the fact that most of focus under SGSY
    programmes is for women - There is very less
    focus on Livelihood opportunities and skill
    training for women with disabilities

49
4. Social/ Cultural participation
  • Policies, Programmes - Opportunities and
    Critical Gaps

50
Social/ Cultural participation
  • Limited opportunities for PWDs esp. WWDs to
    socialise within the family and community in
    general Examples marriage, access to places of
    worship, participating in social gathering,
    recreational activities
  • Events organised with persons with disabilities
    are seen to be programme meant only for them and
    not for us

51
5. Political participation
  • Policies, Programmes - Opportunities and
    Critical Gaps

52
Political participation
  • Lack of active participation of PWDs. esp. WWDs
    in decision making forum/ process starting with
    the family, mechanisms of self-governance (Grama
    Sabha, Ward meetings), political processes
    resulting in invisibility and exclusion from
    decisions affecting their lives and their
    community
  • PWDs are included in LLC, coordination committees
    at the District and State level - merely to
    fulfill the criteria

53
6. Advocacy/ Empowerment
  • Policies, Programmes - Opportunities and
    Critical Gaps

54
Advocacy/ Empowerment
  • With development organisations there is a
    dichotomy in treating disability as an issue
    (including those who have a disability programme)
    - disabled people are not included in the general
    programmes
  • Some have parallel programmes in the name of CBR
    (?)

55
Advocacy/ Empowerment
  • Why advocacy? How do we address the unmet needs?
  • As an organisation, do we resort to parallel
    service delivery or make institutions more
    accountable and responsive.
  • Which approach is more sustainable? Which one
    empowers the disabled?

56
Advocacy/ Empowerment
  • In general, there is lack of emphasis in building
    capacities of PWDs and their groups with a Rights
    based perspective.
  • As a results the thinking is limited primarily to
    charity oriented schemes (Jharkhand pension to
    all)
  • There is a need to widen the focus

57
Advocacy/ Empowerment
  • Disability movement/ network continues to be in a
    nascent stage and disjointed
  • Alliances with other peoples movements ensuring
    inclusion of PWDs is virtually non existent
    example children, women, dalit, workers
    (organised/ unorganised) sector, health, etc

58
Advocacy/ Empowerment
  • There is a great need to advocate for
    institutionalising the process of inclusion of
    PWDs in the regular societal institutions
  • In whatever we do we need to ensure that we do
    not reinforce dependency

59
Some of the Key strategic focus
  • Advocacy strategies should be designed keeping in
    mind that self-worth, respect and dignity is
    instilled within PWDs throughout the process
  • Conscious efforts has to be made to include WWDs
    in the advocacy process and encourage leadership
  • A strong/ vibrant disabled peoples movement is
    needed to effectively bring about the desired
    change

60
TDAP in Bellary
  • 60-70 PWDs SHG/ federation discussed on PWD Act,
    identified issues
  • Meeting with the DC
  • Press Release
  • Instructions to Banks
  • Access to funds from Panchyat

61
TDAP at Kolar, Karnataka
  • 2-Day workshop with the stakeholders and
    Education Dept. on Status of SSA
  • Organised grievance meeting with Thasildhar and
    12 Govt. Dept.
  • Workshop on using RTI
  • Exposure for partners of CBR Forum

62
TDAP Kakinada
  • 60-70 PWDs and their federations trained in
    identifying/ communicating issues
  • Local MLA involved
  • Disability Certificate/ Bank Loans/ Govt. Schemes
    clarified
  • Extension of the World Bank Programme for PWDs in
    Kakinada Dist.

63
TDAP Tamaraserry
  • 80-100 PWDs and Parents trained in identifying/
    communicating issues
  • Meeting with the Govt. Functionaries and
    representations given
  • Schools/ Barrier-Free Access/ Disability
    Certification

64
TDAP Tiruvallur, Tamil Nadu
  • 50-60 PWDs and Leaders of Federation Trained on
    identifying issues
  • Meeting with Govt. Officials to know the
    different provisions available

65
TDAP Tiruvallur, Tamil Nadu
  • Meeting with over 100 Govt. officials
  • Under the leadership of the Dist. Collector
  • Highlighted local issues affecting the lives of
    PWDs in relation to PWD Act 1996

66
Proactive Advocacy Actions by CBR Forum
Secretariat
  • Submission of the Consolidated Report from
    Partners to the Min.SJE on Amendments to PWD
    Act
  • Participation in DFID Study On the level of
    awareness/ inclusion of persons with disabilities
    in HIV/AIDS initiatives
  • Coordinated discussion on Inclusion of PWDs in
    Health Movement NHA2 Bhopal, Mar 07
  • Involved in drafting of the Karnataka State
    Policy on Inclusive Education
  • Access Audits with Commissioners Office of
    Disabilities
  • Using RTI to ensure barrier free access

67
Proactive Advocacy Actions by CBR Forum
Secretariat
  • Ensured participation of WWD in Womens Day
    Programme with our partners
  • Study on Status of Education of CWDs through
    partners
  • Networking with organisations such as AIFO, ADD
    India, Samuha Samarthya, APD, Action Aid in
    facilitating training sessions on UN Convention
    on the Rights of Persons with Disabilities
  • Dissemination of information e-group with
    partners of CBR Forum, CBR Forum Website

68
Would some partners like to share examples of
Advocacy Actions?
69
Comments from participants?
70
Thank you
  • Mr. Gautam Chaudhury
  • C/o. SANCHAR
  • gautamchaudhury_at_hotmail.com
  • C Mahesh
  • CBR Forum
  • advocacy.cbrforum_at_gmail.com
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