Transcript Advocacy and Lobbying...Future

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, [email protected]
[email protected]
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
individual’s medical condition
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
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
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
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
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”
Rights Based Approach
Opportunities in current
changing environment…
Millennium Development Goals
– By 2015
1. Eradicate extreme poverty and hunger
2. Achieve universal primary education.
3. Promote gender equity & empower
women
4. Reduce child mortality.
5. Improve maternal health
6. Combat HIV / AIDS, Malaria & other
diseases.
7. Ensure environment sustainability
8. Develop global partnership for
development.
Biwako Millennium Framework
– Asia Pacific - 2003-2012
Towards An Inclusive, Barrier-Free And Rights-Based Society
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
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
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.
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
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…
Exploring “Opportunities/ Avenues
for Advocacy/ Lobbying”
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
A brief review of….
Policies, Programmes Opportunities and Critical Gaps
to be addressed
Policies, Programmes Opportunities and Critical Gaps
Some of the areas covered
1.
2.
3.
4.
5.
6.
Education
Health
Livelihood
Social/ Cultural participation
Political participation
Advocacy/ Empowerment
1. Education
Policies, Programmes Opportunities and Critical Gaps
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
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)
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
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 NGO’s/ 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
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
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
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
SSA
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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;
2. Health
Policies, Programmes Opportunities and Critical Gaps
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
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,
TB…NRHM
 (Many organisations run separate awareness
programme for disability rather than including
disability components in the existing mechanisms
of the Health Dept.)
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?”
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 doesn’t reach some
of the disabled people.
 Are disabled people not at risk of having HIV and
AIDS?
Curative Health
 Lack of appreciation that disabled people’s
health needs are same as others – Disabled
people’s 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
Rehabilitation (Health)
 Rehabilitative services related to health are
very limited
 All major rehabilitative needs are not
addressed by the Department of Health. And
MSJ&E should not try to continue to address
this gap
Health – Women with Disabilities
 “Are disabled women part of the
women’s 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
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)
Drinking Water and Sanitation
 Do disabled people have Equal Access?
 Right to privacy especially for women are
often not respected.
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.
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”
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?’
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 can’t 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?
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?
3. Livelihood
Policies, Programmes Opportunities and Critical Gaps
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)
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
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
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
4. Social/ Cultural
participation
Policies, Programmes Opportunities and Critical Gaps
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’
5. Political participation
Policies, Programmes Opportunities and Critical Gaps
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
6. Advocacy/ Empowerment
Policies, Programmes Opportunities and Critical Gaps
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 (?)
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?
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
Advocacy/ Empowerment
 Disability movement/ network continues to
be in a nascent stage and disjointed
 Alliances with other people’s movements
ensuring inclusion of PWDs is virtually non
existent – example – children, women, dalit,
worker’s (organised/ unorganised) sector,
health, etc
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”
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
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
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
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.
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
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
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
Proactive Advocacy Actions by CBR
Forum Secretariat
 Submission of the Consolidated Report from Partner’s to
the Min.SJ&E 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 Commissioner’s Office of Disabilities
 Using RTI to ensure barrier free access
Proactive Advocacy Actions by CBR
Forum Secretariat
 Ensured participation of WWD in Women’s 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
Would some partners like to share
examples of Advocacy Actions?
Comments from participants?
Thank you
Mr. Gautam Chaudhury
C/o. SANCHAR
[email protected]
C Mahesh
CBR Forum
[email protected]