advocacy and lobbying project partners meeting 2007…future… c. mahesh cbr forum, 14, ck garden,...

Advocacy and LobbyingAdvocacy and Lobbying

Project Partners Meeting

2007

……future…future…

C. MaheshCBR Forum,

14, CK Garden, Wheeler Road Extn, Bangalore – 560 084

Tel. 080-25497387 or 25497388, [email protected]

[email protected]

mailto:[email protected]


Understanding DisabilityUnderstanding 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”?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 Understanding Disability issues as Human Rightsissues 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 RightsUnderstanding 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 ApproachRights 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…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 ApproachRights Based Approach

Opportunities in current changing environment…

Millennium Development Goals Millennium Development Goals – By 2015– By 2015

1. Eradicate extreme poverty and hunger2. Achieve universal primary education. 3. Promote gender equity & empower

women4. Reduce child mortality.5. Improve maternal health6. Combat HIV / AIDS, Malaria & other

diseases.7. Ensure environment sustainability 8. Develop global partnership for

development.

Biwako Millennium Framework Biwako Millennium Framework – Asia Pacific - 2003-2012– Asia Pacific - 2003-2012

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

UN Convention UN Convention on the on the

Rights of Persons with Disabilities Rights of Persons with Disabilities (UNCRPD)(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 Convention on the Rights of Persons with Disabilitieswith 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?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…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…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 Exploring “Opportunities/ Avenues for Advocacy/ Lobbying”for Advocacy/ Lobbying”

Exploring “Opportunities/ Avenues Exploring “Opportunities/ Avenues for Advocacy/ Lobbyingfor 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….A brief review of….

Policies, Programmes - Policies, Programmes - Opportunities and Critical Gaps Opportunities and Critical Gaps

to be addressedto be addressed

Policies, Programmes - Policies, Programmes - Opportunities and Critical GapsOpportunities and Critical Gaps

Some of the areas coveredSome of the areas covered

1. Education

2. Health

3. Livelihood

4. Social/ Cultural participation

5. Political participation

6. Advocacy/ Empowerment

1. Education1. Education

Policies, Programmes - Opportunities and Critical Gaps

Education – Positive OutcomesEducation – 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 Some challenges Children who are able to access schoolChildren 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…Some Challenges – Cont…Children who are able to access schoolChildren 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 Some Challenges Children who are not able to access regular schoolChildren 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 Challenges Before Elementary EducationBefore 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 ElementaryChallenges 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 Challenges Need to re-look RolesNeed 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

SSASSA 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. Health2. Health


Health – Overall ChallengesHealth – 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 PreventionPromotion 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 PreventionPromotion 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 PreventionPromotion 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 HealthCurative 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)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 DisabilitiesHealth – 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 SanitationDrinking 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 SanitationDrinking Water and Sanitation

Do disabled people have Equal Access? Right to privacy especially for women are

often not respected.

Enhancing access to servicesEnhancing 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 servicesEnhancing 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 sensitivityNeed 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 GapsThe 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 GapsThe 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. Livelihood3. LivelihoodPolicies, Programmes -

Opportunities and Critical Gaps

LivelihoodLivelihood

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)


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 TrainingLivelihood – 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


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 4. Social/ Cultural participationparticipation


Social/ Cultural participationSocial/ 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 participation5. Political participation


Political participationPolitical 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/ Empowerment6. Advocacy/ Empowerment


Advocacy/ EmpowermentAdvocacy/ 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 (?)


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?


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


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


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 focusSome 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 BellaryTDAP 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, KarnatakaTDAP 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 KakinadaTDAP 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 – TamaraserryTDAP – 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 NaduTDAP 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 NaduTDAP 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 Proactive Advocacy Actions by CBR Forum Secretariat 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 Proactive Advocacy Actions by CBR Forum Secretariat 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 Would some partners like to share examples of Advocacy Actions?examples of Advocacy Actions?

Comments from participants?Comments from participants?

Thank youThank you

Mr. Gautam Chaudhury

C/o. SANCHAR

[email protected]

C Mahesh

CBR Forum

[email protected]



advocacy and lobbying project partners meeting 2007…future… c. mahesh cbr forum, 14, ck garden,...

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