1. Rights of People with Disabilities An Introduction for Caregivers

2. Rights of People with Disabilities An Introduction for Caregivers

3. Defining “Disability” Disability is an evolving concept. The UN Convention defines persons with disabilities as persons 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. 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.

4. Exercise What rights do people with disabilities have?

5. UN Convention on the Rights of People with Disabilities (2006) Education Accessibility Life Equal recognition before the law Access to justice Liberty and security of person Freedom from torture or cruel, inhuman or degrading treatment or punishment Freedom from exploitation, violence and abuse The integrity of the person Liberty of movement Nationality Living independently Inclusion in the community Personal mobility Freedom of expression and opinion Access to information Privacy Respect for home and the family Equal access to health and health care Habilitation and rehabilitation Work and employment Adequate standard of living and social protection Participation in political and public life Participation in cultural life, recreation, leisure and sport

6. Exercise In what ways have you seen or heard about those rights being violated?

7. UN Convention on the Rights of People with Disabilities (2006) These rights are not unique to people with disabilities. Everyone has them. Many are already guaranteed by the South African Constitution and by other human rights treaties. There is a separate treaty because the needs of people with disabilities are different, even though the rights are the same. The rights are indivisible and interconnected. Each right facilitates the exercise of other rights.

8. Agenda

9. Right to Equal Protection (Art. 12) States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

10. Equality in Medical Treatment Equality means that patients have the right to be informed, consulted, and to the extent possible, make their own medical decisions You MUST  Give the patient information about his or her condition in a way that he or she can understand it, including using an interpreter if required  Explain and discuss treatment options and pros and cons  Take the time to make sure that patients understand what you are telling them  Any time you interact with the patient speak to them directly. If required, explain what you are doing and why. You MUST NOT bypass the patient and discuss treatment only with a concerned family member unless the patient is totally incapacitated. This is true even if it is easier for you to talk to the family member and you are confident that the family member has the patient’s best interests at heart. Remember, confidentiality laws apply to persons with disabilities, including people who are HIV positive.

11. Exercise Split into groups of three. One of you play a patient with disabilities, one play a doctor, one of you play a parent. The “doctor” should explain to the “patient” that he or she has HIV. The “parent” should try to get very involved in the conversation, but the “doctor” should talk directly to the “patient” without being disrespectful to the “parent”. The “doctor” should make sure that the “patient” really understands.

12. Exercise Share your experience with the group. Was anything difficult? For those playing patients: How did you feel? How did it feel to be excluded? Did you understand what was being explained?

13. Agenda

14. Right to Liberty (Art. 14) States Parties shall ensure that persons with disabilities, on an equal basis with others:  Enjoy the right to liberty and security of person;  Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty. States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of the present Convention, including by provision of reasonable accommodation.

15. Right to Live Independently and in the Community (Art. 19) States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:  Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;  Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;  Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

16. Right to Equal Protection (Art. 12) States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are:  proportional and tailored to the person's circumstances,  apply for the shortest time possible and  are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests.

17. Exercise What would you say to someone who really needed to be in your facility, but wanted to leave?

18. Agenda

19. Freedom from Violence and Abuse (Art. 16) Article 16 protects the right to be free from “all forms of exploitation, violence and abuse, including their gender-based aspects.” States have to take action to protect this right by:  Providing assistance and support to people with disabilities and their families/caregivers  Providing information on recognizing violations of the right  Monitoring facilities that serve people with disabilities  Promoting recovery and rehabilitation of people who are victimized  Passing legislation to ensure that violations of the right are identified, investigated and prosecuted.

20. Related Articles Article 15 – “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.” Article 17 – “Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.”

21. Exercise Give examples of abuse. Give examples of violence. Give examples of torture. Give examples of cruel, inhuman or degrading treatment.

22. What does this mean? It is never okay to use torture or cruel, inhuman or degrading treatment or punishment It is never okay to subject people with disabilities to exploitation, violence or abuse, including gender based violence. In spite of this, abuse (including sexual abuse) of people with disabilities is common.

23. Your obligations You have an obligation to care for people with disabilities with respect for their dignity You have an obligation to stop violence and abuse by providing information to other caregivers You should promote rehabilitation of victims You should ensure that violence against people with disabilities is identified and reported Your facility should be monitored

24. Signs of abuse Physical signs include: unexplained injuries, pain, or bruising delay in seeking treatment over-sedation stained, torn or missing clothes change in sexual behaviour unexplained pregnancy sexually transmitted diseases Circumstantial signs include: alcohol or drug abuse by caregiver devaluing attitudes by caregiver Behavioural signs include: behavioural extremes, like hyperactivity and/or mood swings unusual fear of a particular person avoidance of specific settings fear of intervention depression sleep disturbance eating disturbance withdrawal excessive crying spells excessive weight loss/gain poor self-esteem self-destructive behaviour From People’s Law School, Abuse of People with Disabilities, pp. 4-5, at www.publiclegaled.bc.ca/snapfiles/Abuse_Disabil._Information.pdf.

25. What to do when you suspect mistreatment or abuse Talk with the suspected victim directly and privately about the suspected abuse.  Create an environment of safety and support and prepare for the person’s specific needs e.g. a very quiet space, time to rest, etc.  Ask questions like “Are you having trouble? Can I help you? Can I contact a friend for you? How would you like to be assisted?” If someone discloses abuse to you, allow sufficient time for him or her to tell the story. The full scope of the abuse is usually revealed over time. It involves a relationship of trust and a space for the person to assess the impact and extent of the abuse. Assess the degree of danger he or she is experiencing. Help him or her develop a safety plan. Document the incident in his or her medical record. Plan for follow-up care. Give him or her information on resources that could be useful. From People’s Law School, Abuse of People with Disabilities, pp. 4-5, at www.publiclegaled.bc.ca/snapfiles/Abuse_Disabil._Information.pdf andwww.publiclegaled.bc.ca/snapfiles/Abuse_Disabil._Information.pdf Center for Research on Women with Disabilities, Guidelines for Physicians on the Abuse of Women with Disabilities, at www.bcm.edu/crowd/abuse_women/ABUGUIDE.htm

26. Violence against mental health patients What types of violence do people with mental illness experience? What are reasons that mental health patients might experience more violence than other disabled persons when in treatment facilities? Since the Convention calls on us to end violence against people with disabilities, is physical force ever okay? If so, what limits are there to make sure that “cruel, inhuman or degrading treatment or punishment” does not occur and “physical and mental integrity” are protected?

27. Exercise What is difficult for you as a caregiver about protecting these rights?

28. Agenda

29. Other rights you can facilitate Participation in cultural, political, and public life (Art. 29) Liberty of movement (Art. 18) Freedom of expression (Art. 21) Access to information (Art. 21) Education (Art. 24) Health (Art. 25) Habilitation and rehabilitation (Art. 26) Work (Art. 27) Adequate standard of living (Art. 28) Access to justice (Art. 13)

30. Exercise What programs does your facility have to facilitate the exercise of these rights? In an ideal world, what could your facility change to make the exercise of these rights easier?

31. Rights of People with Disabilities An Introduction for Caregivers