Advocacy and Lobbying

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Advocacy and Lobbying
future
Project Partners Meeting 2007
C. Mahesh CBR Forum, 14, CK Garden, Wheeler Road
Extn, Bangalore 560 084 Tel. [phone] or
25497388, cbrforum_at_blr.vsnl.net.in advocacy.cbrfor
um_at_gmail.com
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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

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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

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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

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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

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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

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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

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Rights Based Approach

• Opportunities in current changing environment

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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.

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Biwako Millennium Framework Asia Pacific -
2003-2012

• Towards An Inclusive, Barrier-Free And
  Rights-Based Society

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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

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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

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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.

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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

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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

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Exploring Opportunities/ Avenues for Advocacy/
Lobbying
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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

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A brief review of.
Policies, Programmes - Opportunities and
Critical Gaps to be addressed
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Policies, Programmes - Opportunities and
Critical GapsSome of the areas covered

• Education
• Health
• Livelihood
• Social/ Cultural participation
• Political participation
• Advocacy/ Empowerment

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1. Education

• Policies, Programmes - Opportunities and
  Critical Gaps

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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

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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)

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Some Challenges ContChildren 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

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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

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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

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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

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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

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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

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2. Health

• Policies, Programmes - Opportunities and
  Critical Gaps

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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

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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.)

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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?

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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?

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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

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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

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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

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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)

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Drinking Water and Sanitation

• Do disabled people have Equal Access?
• Right to privacy especially for women are often
  not respected.

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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.

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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

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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?

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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?

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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?

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3. Livelihood

• Policies, Programmes - Opportunities and
  Critical Gaps

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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)

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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

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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

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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

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4. Social/ Cultural participation

• Policies, Programmes - Opportunities and
  Critical Gaps

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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

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5. Political participation

• Policies, Programmes - Opportunities and
  Critical Gaps

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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

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6. Advocacy/ Empowerment

• Policies, Programmes - Opportunities and
  Critical Gaps

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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
  (?)

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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?

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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

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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

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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

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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

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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

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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

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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.

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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

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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

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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

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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

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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

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Would some partners like to share examples of
Advocacy Actions?
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Comments from participants?
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Thank you

• Mr. Gautam Chaudhury
• C/o. SANCHAR
• gautamchaudhury_at_hotmail.com
• C Mahesh
• CBR Forum
• advocacy.cbrforum_at_gmail.com