Responses on How to Address Disability Within National Response Dr. Jill Hanass-Hancock HEARD

John Meletse Film “Stepping into the Unknown” “You are given a beautiful cocktail of tablets, and no one explains what they are for and how they would help me” John Meletse Film “Stepping into the Unknown” www.heard.org.za Intro which shows that ART us now available – however if one has a disability (or acquires one) there is no “reasonable accommodation” of this disability

Interrelations of Disability and HIV People with disabilities and/or mental health problems PLHIV who experience disability People who care for PLHIV especially young carers mental health disorders e.g. depression, schizophrenia, anxiety, substance abuse … neuro-cognitive disorders... sensory impairments (visual, hearing, touch) problems with the digestive system problems with sexual functions episodic disabilities stigma, discrimination ? increased risky behaviour increased risk of sexual abuse and less access to justice negative attitudes from health care staff problems with accessing health services and education can effect adherence AIDS related activity limitation is associated with increased child healthcare task, less school attendance, food insecurity and educational outcomes the interrelationship between increased care giving burden and disability is exacerbated in the context of HIV Present that there are some studies available who looked into the interrelationship of disability/impairment and HIV The available studies provide: Argument that PWD are at increased risk of exposure to HIV Growing concern of HIV related health challenges (which we summaries as disabilities) In some areas such as mental heath there is also some evidence available in regards to the scope of the problem (cross-sectional surveys and prevalence studies) However none of the studies provides us with and understanding what impact an HIV related impairment and disability has on the person life and surroundings (social side of disability is missing), does not reflect on activity limitations and social impact – and with this doesn’t guide our response be joint a very medical response (in from of medication)

Methodology Two reviews were conducted looking at all countries within Eastern and Southern Africa 1. Review of Disability Rights and HIV/AIDS This included a desk review of international commitments and in country legal documentation and policies in regards to disability and HIV 2. Review of National Strategic Plans on HIV /AIDS A tool was developed for the review using the Convention on the Rights of Persons with Disability (CRPD) and the UNAIDS International Guidelines on HIV and Human Rights as a guiding tool. (see www.heard.org.za) Short explanation

Disabiltiy rights in Africa (building blocks) The Convention on the Rights of People with Disabilities (CRPD, 2006) The Maputo Protocol on Human and People’s Rights and on the Women in Africa (1995) The African Charter on the Rights and Welfare of the Child (1989) Talk to inclusion of disability in previous declarations African charter on human rights – recognizes the rights of persons with disabilities (not discrimination on the grounds of disability but recognises the rights of the “disabled!” Maputo Protocol and African Child charter include provisions relating to disability Talk about relevant key articles in CRPD Basic concepts of universal design and reasonable accommodation + article 4 to provide research into this Article 9 accessibility Article 13 access to justice Article 25 right to health The African Charter on Human and People’s Rights (1981)

Uptake of international commitments Country African Charter Maputo Protocol African Children’s Charter Angola Yes No Botswana Burundi DRC Kenya Lesotho Madagascar Malawi Mauritius Mozambique Namibia Rwanda Seychelles South Africa Swaziland Tanzania Uganda Zambia Zimbabwe Explain and highlight Ratification of CRPD 2010

Domestication of disability rights Examples of Good Practice in the region The right to equality and non-discrimination The right to care, including health care The right to employment The right to participation Legal protections and penalties Interlinkages of disability and HIV in policies Explain and give examples The right to equality and non-discrimination e.g. Malawi constitution (1994), SA Promotion of Equality and Prevention of Unfair discrimination Act (2000) The right to care, including health care Kenya's The Persons with disability Act (2003) The Right to employment e.g SA Employment Equity Act or the Mauritius Equal Opportunity Act (2005) The right to participation Malawi constitution (1994) section 13 Legal protections and penalties SA Promotion of Equality and Prevention of Unfair discrimination Act (2000) chapter 4 – Equality court Interlink ages of disability and HIV in policies e.g. Lesotho National HIV and AIDS policy (2006), Tanzania National Policy on Disability (2004)

Gaps and weaknesses in domestication Separate development of disability and HIV legislations – no systematical approach to address the links between HIV and AIDS Limited obligations to ensure the availability and accessibility of specialized goods, services and facilities, including the provision for access to information Limited provision for access to justice Limited provision for data collection on disability as well as disability and HIV Limited recognition of the gender dimension of disability Limited inclusion of disability into National Strategic Plans on HIV

Integration of Disability into HIV Policies and Programs 2010 NSP fails to recognise disability as an issue in any way NSPs do not specifically indentify disability as an issue but nevertheless include some reference to disability within the response NSP identifies disability as an issue but fails to operationalise this concern NSP identifies disability as an issue and takes selective steps to operationalise this concern NSP identifies disability as an issue and takes extensive steps to operationalise the issue Explain criteria's + good practise examples + reflection on link between domestication of disability laws, recognition of interrelationship and NSPs Criteria: Recognition of people with disabilities as a vulnerable part of the population in need of special protection in the context of HIV and AIDS Inclusion of people with disabilities within the national response to HIV and AIDS Protection of the rights of people with disabilities to equality and non-discrimination, in order to reduce vulnerability and to mitigate the impact of HIV and AIDS (including through appropriate law and policy; awareness, education and rights-based training; access to legal support services and other measures to reduce disability-related stigma and discrimination and socio-economic inequality of people with disabilities) Provision of HIV-related prevention, treatment, care and accessible and appropriate support services for people with disabilities including those who become disabled due to HIV and AIDS, and Inclusion of disabled people in research, monitoring and surveillance relating to HIV and AIDS. Interesting that PWD were recognised in some NSPs but not HIV related disability Good practice examples:

Inclusion of Disability in National Strategic Plans on HIV and AIDS NSP task group on disability and HIV, Framework for the Inclusion of Disability in the National Strategic Plans on HIV and AIDS, Jill Hanass-Hancock (HEARD) and Emelia Timpo (UNAIDS), Editors. 2011, HEARD, School of Law, UKZN, Barrett Advocacy and Training, AIDS-Free World, University College London, CWGHR, Handicap- International, DHAT, UNAIDS: Durban and Geneva. Golden standards for the future – explain disability concept possible role in ART management – treatment care and support Universal design Rehabilitation and Access Reasonable accommodation Wellness and Enablement

Inclusion of Disability in National Strategic Plans on HIV and AIDS The framework is targeted at NSP development and provides advise on: NSP background analysis Key principals (enablers within an NSP) National frameworks and structures Priority areas / strategic objectives Human Rights approach Health related Services (prevention, treatment care and support) Legal Support services Research, monitoring and evaluation 5. Resource mobilisation 6. Step by Step guidelines Explain development of framework, explain outline of framework – launch it

Please join us for more Discussions Tomorrow 7.12.2011 1015-11.45 at the disability zone Roundtable discussion: Including the world’s biggest minority in HIV-programming: how can it be done? With speakers from Cameroon, Burundi, Geneva, Ethiopia, Kenya, Uganda, South Africa and Zimbabwe DHAT, HEARD, Handicap International, NUDIPU, UNAIDS, RATN and many more … Explain also links to main panel question: along the way there will always pop up the question: What is disability? How can we measure it? It will be of advantage to use a model that has been international tested, culturally adapted and covers a range of issues ....

THANK YOU The following organisations contributed to the Disability Inclusive NSP Framework