HIV, Disability and Mental Health: What are the links?

1. HIV, Disability and Mental Health: What are the links? Wendy Porch and Elisse Zack Canadian Working Group on HIV and Rehabilitation Dr. Emelia Timpo Senior Advisor, UNAIDS International Policy Dialogue January 2012

2. Overview • Section 1: UN Convention on the Rights of Persons with Disabilities (CPRD) • Section 2: Context for HIV, Disability and Mental Health • Section 3: Global, Regional and National Implications

3. Context • Why are intersections between HIV, mental health and disability of interest? • What are the implications of these intersections for people living with HIV, mental illness and/or other co-morbid conditions or disabilities? • What are the implications of these intersections for our individual areas of work?

4. Background • The Convention on the Rights of Persons with Disabilities (CRPD) is an international treaty that identifies the rights of persons with disabilities as well as the obligations on States Parties to the Convention to promote, protect and ensure those rights • a framework for governments and communities to make rights a reality • Dec 13, 2006 – CRPD formally adopted by the UN General Assembly • May 3, 2008 – entered into force (after first 20 ratifications) • To date, 153 signatories (countries) and 109 ratifications (UN Enable) • Canada ratified the CRPD on March 11, 2010

5. Aboutthe CRPD • Purpose of the CRPD - to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. • Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. (article 1) • http://www2.ohchr.org/english/law/disabilities-convention.htm • UN Enable http://www.un.org/disabilities/countries.asp?id=166

6. How does the CRPD define disability? A cross disability approach • (e) Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others (taken from the preamble)

7. How is the CRPD different from other human rights conventions? • Does not set out new human rights (i.e. that are not already included in other human rights documents) but is a legally binding treaty (i.e. with legal obligations) that compels signatories to implement strategies to promote and protect the rights as outlined in the CRPD.

8. Some key human rights identified in the CRPD Identified Rights include but not limited to: • Education • Personal safety • Life, liberty and security of person • Equality before the law without discrimination • Work / employment • Health • Freedom from cruelty, exploitation, violence, abuse and torture • Housing - For the full list, refer to the CRPD

9. Responsibilitiesof States Parties Some key areas identified in the CRPD (not the full list) • adopt legislation and administrative measures to promote the human rights of persons with disabilities and abolish discrimination; • ensure that the public sector, private sector and individuals respect the rights of persons with disabilities; • promote training on the rights and responsibilities as outlined in the CRPD to professionals and staff who work with persons with disabilities; • consult with and involve persons with disabilities in developing and implementing legislation and policies and in decision-making processes that concern them.

10. Lived Experience ``If you have a wheelchair and you go to an AIDS service organization and the first thing you see are all these flight of stairs, you are immediately discouraged. Secondly, HIV testing and counseling services are supposed to be confidential. But if you’re deaf and you go into this service, you have to go with someone who can interpret for you, which takes away the confidentiality part. So in the end, people don’t turn up.” Winstone Zulu HIV/AIDS and tuberculosis activist, Zambia

11. HIV and Disability • People with disabilities are more vulnerable to HIV and less likely to have access to prevention and education programs • Impairments/disabilities can result from HIV, for example arthritis, some types of cancer, neuropathy, cognitive issues • HIV considered a disability in some human rights contexts and social assistance structures Figure 1 The three dimensions of the HIV-disability field evolving over time. Hanass-Hancock J. & Nixon S.A. The fields of HIV and disability: past, present and future. Int AIDS Society 2009; 12:28

12. HIV and Mental Health • Depression, substance use seem to be more common in people with HIV/AIDS (PHA) • PTSD and generalized anxiety disorder may be more common in PHAs • HAART/ART related neurocognitive impairment on the increase • People with mental illnesses are more vulnerable to HIV. For example: • people living in institutions are not given access to prevention education or methods or provided with the opportunity for (informed consent) testing • people with mental illnesses may be more likely to engage in drug use as a form of self-medication • high rates of mental illness are reported amongst sex workers “Given the uncertain long-term prognosis for HIV, the rapidly changing estimates of life expectancy and health levels and the amount of public prejudice and stigma surrounding the condition, it is unsurprising that mental health issues are of concern to people with HIV and those who care for them" UNAIDS , 2011

13. Mental Health and Disability • Mental illness can be considered a disability in some human rights and social assistance contexts. • People with disabilities are more likely to be abused or assaulted and this can have a mental health impact: • 11.5% of adults with a disability were victims of sexual assault vs. 3.9% of adults without disabilities • 13.0% of people with disabilities were victims of attempted sexual assault compared to 5.7% without disabilities1 • Living with chronic pain and/or other long term health conditions can have a negative impact on mental health 1. http://www.cdc.gov/ncbddd/disabilityandhealth/healthyliving.html

14. Underlying assumptions/realities and MH Assumptions that people living with mental health issues are not sexually active (including in the context of sex work) Assumptions that people living with mental health issues do not engage in other risk behaviours such as injecting drugs Assumptions about transmission and susceptibility can deter people living with MH from being tested for HIV It is estimated that 75% of people with HIV/AIDS will have at least one psychiatric disorder in their lifetime Physical removal from setting such as school that provide vital sexual and reproductive health education (for children with MH disabilities) People living with MH experience exploitation; exposure to violence and sexual assault, populations with MH most at risk: Women and girls MSM Persons with intellectual impairments Those in specialized institutions, schools or hospitals

15. MH and HIV Stigma and Discrimination Persons with MH disabilities may be excluded or turned away from HIV education forums or programmes Those who also belong to other marginalized groups may face compounded stigma and discrimination, and additional barriers to accessing HIV services Low literacy and a lack of HIV prevention information in accessible formats make it all the more difficult for persons with MH disabilities to acquire the knowledge they need to protect themselves from HIV. Confidentiality for persons with disabilities in HIV testing and counselling may be compromised, for example, by the need for a personal assistant to be present in order to access HIV-related services Service providers may lack knowledge about MH disability issues, or have misinformed or stigmatizing attitudes towards persons with MH disabilities. • In settings with limited access to antiretroviral therapy and post exposure prophylaxis, persons with MH disabilities may be considered a low priority for treatment • Health professionals may not pay enough attention to potentially negative drug interactions between HIV treatment and the medications given to persons with MH disabilities

16. What are the Commonalities? • Stigma and discrimination • Trauma, vulnerability to abuse (especially in institutional settings) • Difficulties finding/keeping employment • Interactions with social assistance/benefits systems, poverty • Interactions with health care and social service systems that are not designed to see overlaps in categories • Lack of power/lack of choice in health care • Falling through the cracks

17. Role of Partners in support of Persons with Disabilities and MH

18. Increase networking and information exchange between HIV and disability service, disability advocacy and human rights organizations. Ensure MH disability services, such as support for independent living, are available to people living with HIV. Advocate for persons with MH disabilities to have full sexual and reproductive rights, and freedom from physical and sexual abuse. Ensure campaigns to combat stigma and discrimination of persons who are HIV-positive are accessible to persons with MH disabilities. Actions for Civil Society

19. Ensure HIV policies, guidelines and programmes are designed and implemented to be accessible to all persons with disabilities, and make it mandatory that all HIV programmes incorporate access to information, support and services for persons with disabilities. Develop, validate and support the use of impairment-specific and disaggregated indicators in the national AIDS monitoring and evaluation system. Promote and fund research on HIV and MH disability, ensuring that persons with MH disabilities are included on the research team designing, implementing and analysing the research. Actions for International Partners

20. Prohibit all forms of discrimination against persons with MH disabilities which may hinder access to: social security, health and life insurance, health services such as sexual or reproductive health education, measures for the prevention of mother to child transmission, and post exposure prophylaxis for victims of sexual assault Include HIV as prohibited grounds for discrimination in national legislation Integrate HIV education into training for rehabilitation professionals Include training on the rights of persons with MH disabilities for professionals Working in the area of HIV, by persons with MH disabilities, including those that are HIV-positive Establish age, gender, culture and language-appropriate HIV prevention programmes and provide HIV information in tailored formats for people from different MH groups Provide comprehensive HIV testing, treatment, care and support services Provide equal opportunity to persons with MH disabilities to train and engage in HIV counselling and care provision Actions for Governments

21. Ratify and incorporate into national law instruments that protect and promote the human rights of persons with MH disabilities, including the Convention on the Rights of Persons with Disabilities Incorporate the human rights and needs of persons with MH disabilities into national HIV strategic plans and policies Provide persons with MH disabilities with the same range and quality of affordable HIV, sexual and reproductive health services as the rest of the population by: adapting mainstream services for persons with MH disabilities or if appropriate implementing MH specific services providing support and reasonable accommodation Involve persons with MH disabilities in the planning, implementation and evaluation of HIV programmes, including national AIDS authorities Actions for Governments

22. Opportunities to Integrate MH in HIV Response

23. Globally 34 Million people are HIV-positive, an estimated 15.9 million people are IDU/s globally, HIV prevalence among IDU/s is estimated to be 20%, an estimated 3 million IDU/s have HIV Making injecting safer for people who use drugs by providing sterile equipment is relatively easy and inexpensive and can significantly reduce levels of HIV transmission. The number of sterile needles made available globally per estimated person who injects drugs through harm reduction programmes is very low. IDU/s experience a significant burden of HIV disease and women who inject drugs face even greater risks. Studies indicate that women who inject drugs are more likely to face violence, greater levels of stigma and are more likely to die earlier Persons with MH disabilities often self-medicate with ‘street drugs’ in order to combat the symptoms of HIV and/or Mental illness Eastern Europe and Central Asia have some of the fastest growing HIV infection rates internationally; Russia, and Ukraine account for almost 90 percent of newly reported HIV diagnoses in the region. In Eastern Europe and Central Asia approximately 3.7 million people inject drugs; an estimated one quarter of whom are living with HIV IDU/s and HIV epidemic

24. The significant role that mental health care and IDU care could play in the prevention of HIV should not be ignored. Treating mental health problems brings numerous benefits for the individual, their community and society as a whole. Benefits include improved quality of life for PLHIV and their families, partners and the community; improved health and effectiveness of treatment; reduced morbidity associated with HIV, other diseases and substance misuse; increased productivity which benefits society; and more efficient use of health care services. Harm Reduction Programmes Needle Exchange Programmes: Availability of fewer than 100 syringes per person who injects drugs per year is considered low, 100–200 medium, and more than 200 high. Opioid Substitution Programmes Employee Assistance Programs Therapy: behavioural, family Pharmacotherapy Assistance with Housing, Legal Matters, Child Care Condom distribution in easily accessible locations Integration of MH into Current Response to IDU/s

25. Continuing Role of UN System in support to Persons with MH Disabilities

26. United Nations Inter-Agency Support Group for the Convention on the Rights of Persons with Disabilities (IASG) established. First meeting was held in December 2007. Through the IASG, the United Nations supports the States parties, within a framework of coordinated planning and action. The IASG ensures that the programmes and policies of the United Nations are inclusive of persons with disabilities, and works to strengthen recognition of and respect for the principles of the Convention on the Rights of Persons with Disabilities. Membership of the IASG: United Nations departments, regional commissions, agencies, funds and programmes whose work is relevant to the Convention. UN System’s Areas of Focus

27. Tasks/outputs: By the end of 2009, the Task Team developed guidance/toolkit for UN Country Teams (UNCTs) to support the implementation of the Convention on the ground, including contributions to the work of the Convention Committee, mainstreaming the principles, rights and actions laid out in the Convention and the disability perspective in the work of the UN system. Developed a proposed strategy or action plan to roll out these tools and to further support the efforts of UNCTs. Provided input for the next revision of the UNDG CCA/UNDAF Guidelines that enabled UNCTs to better integrate the rights of persons with disabilities as set out in the Convention on the Rights of persons with Disabilities/a human rights approach to disability in the UN Common Country Programming process. Selected Achievements to Date

28. Recognized the need to take into account the rights of persons with disabilities in particular with regard to health, education, accessibility and information, in the formulation of our global response to HIV and AIDS; Noted with concern that prevention, treatment, care and support programmes have been inadequately targeted or made accessible to persons with disabilities. Committed to ensure that financial resources for prevention are spent as cost-effectively as possible, and to ensuring that particular attention is paid to people with disabilities. Committed by 2015 to address factors that limit treatment uptake and contribute to treatment lack of accessibility of information, resources and sites, especially to persons with disabilities. Welcomed adoption of CRPD and recognized the need to take into account the rights of persons with disabilities as set forth in that Convention, in particular with regard to health, education, accessibility and information, in the formulation of our global response to HIV. Outcome of General Assembly meeting on AIDS – June 2011

29. Programming Opportunities

30. Strengthening strategic guidance and support to national partners to ‘know their epidemic and response’ in order to effectively meet the needs of people with MH and disabilities. Assisting countries to ensure that national HIV and development strategies, operational plans, monitoring and evaluation frameworks and associated budgets address the needs and rights of people with MH and disabilities in the context of HIV. Advocacy, capacity strengthening and mobilization of resources to deliver a comprehensive set of measures to address the needs and rights of people with MH disabilities in the context of HIV. Action Framework for MH and HIV

31. Next Steps

32. Broadly disseminate report of UNAIDS Policy Dialogue and June meeting Support the integration of persons with MH within the National Strategic Framework and Plans on HIV Coordinate the development of joint strategies for advocacy Document and disseminate lessons learned from programs for persons with MH and disability and HIV Strengthen the network between UNAIDS cosponsors working on MH and disability and AIDS Finalize of UNAIDS strategy on disability and AIDS Create connections between World AIDS Day (Dec 1st) World Mental Health Day (Oct 10th) and World Disabilities Day (Dec 3rd) Next Steps

33. Questions for Discussion • Do you have examples of HIV, mental health and disability programs working together to address these issues? • How does the CRPD relate to HIV, mental health and disability? • What are the challenges to working together? What are the benefits? • Examples of how the CRPD is currently being implemented? • What needs to happen to make this move forward? • Potential collaborations going forward?

34. Thank you This work was funded in part by:

35. For more information • Office of the UN High Commissioner for Human Rights http://www2.ohchr.org/english/law/disabilities-convention.htm • UN Enable http://www.un.org/disabilities/countries.asp?id=166 • UNAIDS AIDSspace www.aidsspace.org • WHO-Disability and Rehabilitation Action Plan 2006-2011 • Human Rights Watch • AIDS- Free World – Disability and AIDS • In Canada • Council for Canadians with Disabilities: http://www.ccdonline.ca/en/ • Canadian Working Group on HIV and Rehabilitation: www.hivandrehab.ca • Health Canada – report on 2009 Policy Dialogue on HIV and disability • AIDSLEX: www.aidslex.org