Implementation of UN Convention on Rights of People with Disabilities: public hearings Day 2

Meeting report

Disabled People of South Africa submission
Mr Michael Bam, Chairperson: Disabled Youth in Western Cape, presented on the background of the Disabled People of South Africa (DPSA) and its proposals regarding the Convention. DPSA has been promoting and defending human rights of persons with disabilities since 1984. DPSA is the premier, largest and democratic cross - disability movement of, by and for persons with disabilities in South Africa and is made up of local branches spanning nine provinces across South Africa. DPSA has played a central role in shaping the nature of the human rights struggles of persons with disabilities in South Africa and its slogan: ‘Nothing about us Without Us’ has ensured the human rights of persons with disabilities are recognised and entrenched.

As regards the Convention, the DPSA proposed as follows - The South African Government promotes, protects and ensures the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and promote respect for their inherent dignity; Enact national disability legislation that would give greater protection to persons with disabilities; The establishment of an independent statutory agency in the mould of the Disability Rights Commission in terms of Articles 31 and 33 of the Convention to monitor and enforce compliance with the legislation; The establishment of a National Disability Helpline which must incorporate a Video Relay Service (VRS) in terms of Articles 9, 21 of the Convention to enable disabled and non-disabled citizens to access government information and delivery of services in a central and coordinated location; The implementation of the Convention must also result through concrete measures that strengthen Intergovernmental Relations Framework on disability for coordinated and holistic disability development framework; DPSA called for the implementation of the Convention which South Africa signed in 2007 in order to comply with and to give substance to this international law and for South Africa’s own constitutional requirements.

Individual Submission - Mr Ncendo Skosana
Mr Ncendo Skosana, a person living with disability, spoke about the challenges faced by the disabled in the Eastern Cape where he lives. The Eastern Cape province is generally regarded as poor and lacking in basic amenities and the disabled in this province were even more unfortunate. An instance was cited where a facility built for the disabled by the previous administration had been taken over and converted for use by non disabled persons. Assistive devices were not readily available to persons with disabilities in the Eastern Cape. The few infrastructural developments that had taken place within the province did not take the disabled into consideration. There were no specific disabled oriented programmes for persons living with disabilities in the province. He called on Parliament to use the Convention and its powers of oversight to ensure the disabled in the Eastern Cape were catered for.

Group of Women with Disabilities submission
Ms Lizhan Cloete, representing the Group of Women with Disabilities, made an oral submission embodying the view by all children and adults with physical and mental disabilities who live in the communities of New Crossroads, Browns Farm, Khayelitsha, Phillipi, Harare and Lusaka. The submission covered services that were once available to people with disabilities in the communities, the current situation and challenges faced and recommendations.

From 1989 until 2002 the communities had community rehabilitation workers who were trained in all aspects of disability. Community rehabilitation workers helped persons with disabilities to accept their disability status, assisted in application for social grants, were trained to support families to accept the changes that arise because of disability and provided assistance by showing what physical exercises the mothers could do with their children who had disabilities, community rehabilitation workers also assisted with accessing assistive devices for persons with physical disabilities. These services all form part of the third and fourth preconditions of rehabilitation and support services as stated in the United Nations Standard Rules. The fourth precondition (Support services) was met when support groups for persons with mental illness were started up in 2000. This initiative enhanced the visibility of persons with disability in the communities of New Crosroads, Browns Farm, Khayelitsha, Phillipi and Lusaka. Meeting the three preconditions were made possible by the work done by community health workers who operated under the auspices of the South African Christian Leadership Assembly (SACLA) Health Project. As a result of decreased funding community rehabilitation workers were retrenched at the end of 2002.

Current challenges included - Transportation: There is a need for emergency transport services since ‘Dial-a -Ride’ bookings have to be made a week ahead, amputees and wheelchair users have to hire private cars to transport them to and from local clinics and such trips are unaffordable to some as they are charged at a minimum rate of R100 for a return trip; Extremely long waiting times at clinics, leading some to forego much needed medical attention; Unemployment; Poor living conditions.

Recommendations included: government should support existing non-profit organisations to assist in employing community rehabilitation workers; government to support non-profit organisations in rendering services that would once again enhance disability awareness in schools and in the community at large; Disability forums need to be established so that income generation projects and other support services can help to integrate persons with disability into society; Persons with disabilities can contribute to the development of their communities and society if the preconditions for equal participation are met and if the barriers in the target areas for equal participation are addressed and removed.

Individual Submission - Ms Nomusa Ngakane
Ms Nomusa Ngakane, a person living with disability, made an oral submission highlighting the plethora of policy / legislation in existence to ensure that persons living with disabilities enjoy the same rights and privileges as their counterpart non-disabled persons. She reiterated that government through its agencies must monitor the delivery of services to ensure the impact of the legislation reached the proposed beneficiaries.

Recommendations included: Developing preventive measures to ensure other persons do not join the rank of the disabled. In this light, structures such as the South African Broadcasting Commission (SABC) should be deployed to educate and enlighten the public. Both the broadcast medium and the responsible departments must be active in disseminating information on issues leading to disabilities such as environmental factors, poor pre natal and post natal care, diseases such as HIV/AIDS, polio, whooping cough etc; Local government structures to ensure the establishment of disability desks in the offices of the Mayor; No policy/law should be deemed to be cast in stone and therefore cannot be changed to meet the needs of the disabled; Provide youth with disabilities with career and vocational opportunities; Decentralisation of services to ensure the needs of people with disabilities are adequately met.

Government Task Team on Drafting of UN Convention on Rights of People with Disabilities
Mr Bulbulia Zain, Acting Director General Office of the Premier, Gauteng Province, gave a brief background on events leading to the signing and ratification of the Convention by South Africa. South Africa started negotiations on the convention in Mexico in 2004/2005 when in 2001 Mexico proposed Article 179 to the UN on the rights of people with disabilities. In 2000 the NGO’s Summit was held in Beijing which was headed by Disabled People International. The UN then formed a Committee and a resolution was passed and negotiations on the Convention began. A task team was formed with the Disabled People’s Association in South Africa and work began in earnest on the Convention. Article 2 of the Convention which defines persons with disabilities can be credited as a purely South African definition, thanks to the task team. Article 9 remains the heartbeat of the Convention around which all other Articles are centred. South Africa signed and ratified the Convention and its Optional Protocol in 2007. The Optional Protocol holds the South African government accountable and it is necessary that citizens do in fact hold the government accountable through Parliament and the Public Protector. Further, there is a need to sustain the Millennium Development Goals within the framework of disability.

Mr Dominique Sochon, from the Office of the Premier, Gauteng Province, discussed recommendations: There is no systematic budget allocation to mainstream the delivery of core services to give access to people with disabilities and this needed to be addressed; The Committee should, based on the report on the UN Convention, insist that all departments demonstrate mechanisms on giving access to each of their core services for all types of disabilities.

Dementia South Africa submission
Ms Karen Borochowitz highlighted the vulnerability of persons living with Alzheimer and Dementia and the role of the Convention in protecting their rights.

The term ‘dementia’ refers to a degenerative brain syndrome involving gradual deterioration in multiple areas of a person’s brain giving rise to a progressive loss of cognitive functioning. Dementia is the umbrella term for a number of conditions such as Alzheimer’s Disease, vascular conditions, dementia with Lewy Bodies, Frontotemperal dementia, Korsakoff’s syndrome (alcohol related dementia), over 100 different types of dementia. It may also be associated with HIV/AIDS. A study done at University of Cape Town indicate that one in three people with HIV/AIDS would develop HIV/AIDS Dementia Complex – a very scary statistic and one which needs to be taken seriously especially with the high incidence of HIV/AIDS in South Africa.

Dementia is not a normal part of ageing. However, the primary risk factor for dementia is advancing age. Most cases of dementia occur in persons over the age of 65 but dementia may manifest in younger persons. The lack of a general social conscience and a specific government department dealing with the care of older persons in the society has left this group of persons vulnerable and at risk. In South Africa, there are only eight trained geriatricians dedicated to the care of the elderly. Older persons suffer economic exploitation and all forms of abuse.

Internationally, the rights of persons with disabilities are inalienable, interdependent and indivisible and this is reflected in the Convention. It can be argued that older persons, like persons with disabilities, are such a vulnerable group who, as a result of historical and systemic disadvantage as a group, are not in a position to equally realise and enjoy their human rights. So too then are those who are left vulnerable as a result of a diagnosis of dementia – including Alzheimer’s disease. A UN Convention would lay the foundation for enhancing the rights of older persons and create a blueprint for potential legislation, policies, practices to Member States and Regional Bodies. Another compelling consideration for strong legal protection of both sectors is the issue of participation and inclusion – the issue of having a voice.

Individual Submission - Ms Moralo
Ms Moralo, a mother to a disabled person, highlighted in her submission the need for immediate intervention in Magaliesburg - particularly for disabled children in the area. There were a high incidence of discrimination and sexual abuse towards the disabled children of Magaliesburg. Schools continually turned down disabled children. Transportation logistics also posed a threat to the education of disabled children as most taxis refuse to transport disabled children to school.

Recommendations proffered included: provision of facilities and assistive devices for the disabled, organising a workshop for taxi drivers to educate them on disabilities.

Challenges Faced by Disabled Children in Basic Education: Amathole District Municipality Eastern Cape: Three Cases from Experiences of Parents of these Children: A Support Group in East London

Ms Nondumiso Mtshayeni
Ms Mtshayeni, the mother of Lindokhule - a disabled child, related the challenges her child had faced in a bid to ensure she is educated. Lindokhule, who was diagnosed with cerebral palsy with athetosis, had been at a special school for learners with physical disabilities since 2008. She had however not benefitted from the school mainly because of the lack of therapists at the school, especially suitably trained therapists with special qualification, Augmentative and Alternative Qualification (AAC). She had been deprived of her right and opportunity to education. Lindokhule was assessed in November 2007 by the Centre for Augmentative and Alternative Communication and it was recommended that Lindokhule was an excellent candidate for AAC. Specific recommendations were to get a laptop with the Grid software program to start expressing herself, computer access to learn literacy and also to access the curriculum, an ETRAN (ear transfer communication system) low tech device. However, lack of resources at the special school made it impossible to implement this program. Lindokhule’s parents have been in constant contact with the school, the Education Department, Rehab and private therapists. Unfortunately, none of these efforts have yielded any results as the child is still not receiving proper education.

The system had failed Lindokhule in her right to education, communication and to adequate care. Although the years wasted can never be replaced, intervention by the Department can still play a role towards a better future for Lindokhule and other disabled children in East London.

Ms Mtshayeni in an emotional plea, asked for quick intervention. She described personal experiences she had with the officials of the Department who constantly undermined her and the discrimination her child suffered from teachers and school authorities on the premise that she is a ‘stupid child’. The device given to her child was useless because no one had been trained in the use of the AAC device.

Ms Nomakhwezi Goceni
Ms Goceni, the mother of Kayla - a disabled child, discussed the challenges faced by Kayla and the family in attempting to secure education for Kayla. Kayla was diagnosed with Mosaic Down Syndrome, a condition which mainly affected Kayla’s communication. Cooperation between the school and Kayla’s parents has been the major challenge since Kayla started Grade R in 2009. Kayla is currently in Grade 3 in a mainstream school. Last term of 2011, the school and department officials informed Kayla’s parents that Kayla was not to be in a mainstream school. Kayla’s parents complained about not being informed of challenges earlier that the school might have been experiencing with Kayla. Kayla’s parents received positive feedback from the new teacher during the School Progress Meetings of this year (2012) and Kayla’s parents were hopeful that the school was finally engaging them on Kayla’s progress. Recently, Kayla’s mother was informed of an arranged meeting in a special school to discuss the possibility of admitting Kayla. The only reason given by the mainstream school for moving Kayla was that it does not cater for children like Kayla and that it would not be admitting Kayla next year.

Ms Miriam Mbaleki
Ms Mbaleki discussed the plight of her child, Sibabalwe, a 15 year old girl in Grade 5 diagnosed with Cerebral Palsy with athetosis. She started school at Vukuhambe Special School Resource Centre and her mother had to attend school for the entire year as no one at school could communicate with or understand her - this meant being available to assist the teachers also with other children. Negative attitudes from some of the teachers’ deterred the mother from further assisting at Sibabalwe’s school. Sibabalwe was also identified as a candidate for AAC but faces the same challenges as Lindokhule.

In the light of the above, the following recommendations were made: Recruitment of therapists, social workers and professional nurses in schools to facilitate the implementation of an inclusive educational system in East London; Inclusion of disabled children in mainstream schools with the necessary support by the schools and department; Strengthen links between district curriculum sections and special schools; Address negative attitudes of teachers and caregivers towards disabled children and their parents.

Discussion
Mr D Worth (DA, Free State) asked if citizens were truly aware of the Disability Help Desks in each of the provincial offices and whether these help desks were indeed performing the functions for which they were established.

Ms H Lamoela (DA) remarked that the system in South Africa was failing the disabled and accountability lines for departments must be ensured so persons with disabilities can access services. The challenges were huge and the stories from East London were but a few examples. She called on the Departments to do what ought to be done to ensure the burden of the disabled was lighter. It was important that Departments submitted their reports and specified challenges, so these challenges could be treated at cabinet level.

Ms Lamoela asked the Group of Women with Disabilities whether the problem areas from the survey carried out in the Western Cape were brought to the attention of the MEC and what the response was.

Ms Lizhan Cloete responded that a feedback meeting had been held with health personnel and local councillor in the Western Cape. Out of the 14 women who had been interviewed, only three were present at the feedback meeting. Capacity building was still needed. A guideline was being developed for members of the Health department and interactions with persons with disabilities.

Mr D Kekana (ANC) remarked on the need for the SABC to embark on extensive disability awareness and sensitisation for the public. He asked Mr Ncendo Skosana what measures were taken when the facility built for the disabled under a previous administration had been withdrawn and used for other purposes.
In response, Mr Wand Mbeki a disabled person from the Eastern Cape said the Disabled Association had used all means within its disposal to report the issue and revoke the decision but their efforts were fruitless.

Mr Kekana asked if persons with disabilities who had undergone vocational training had been absorbed and if not what measures can be put in place to ensure they are absorbed into the work force.

Ms Cloete responded that the University of Cape Town (UCT) had been absorbing persons with disabilities for Honours/Masters in disabilities or any course of choice. For vocational programs, much still needed to be done because the career system was not open to employing people with disabilities as often as they should.

Ms Krish Shunmugam, Deputy Director: Disability, Department of Social Development, in response to Ms Karen Borochowitz submission, stated that the Department of Social Development did in fact have a unit dedicated to older persons and fully fledged programmes to cater for persons with Alzheimer and older persons in general. Further, the Older Person’s Act had been passed.

In response, Ms Borochowitz stated that not all provinces had taken on the delegation of power for the Older Person’s Act, thus it was not fully enacted legislation in these provinces. Also, not all Departments of Social Services in all provinces had developed programs for older persons. Beyond the Department of Social Services, other departments such as the Department of Health needed to take up the responsibility of safeguarding the rights of older persons and demented persons.

Mr Dominique asked what the future steps the Committee intended to take with the information gathered so far from the two day hearing on the Convention.

The Co Chairperson, Ms Mabe, responded that the executive was to report to the Committee at the conclusion of the hearing - by the middle of August. Departments would be called to account and report on issues that had been raised in the hearing. The Committee after this would compile a report on issues raised in the public hearing and responses from the executive. The report would also contain the Committee’s observations and recommendations. A report would be tabled before both houses of Parliament - the National Assembly and the National Council of Provinces. The Country Report would be critiqued based on the report before both houses. Thorough engagement with the Country Report was planned and departments were expected to consider the report.

The Co Chairperson, Ms Ramodibe, in her closing remarks stated that the three experiences related by the mothers of disabled children in East London was disheartening and it was clear that majority of the citizenry were unaware of the Convention. It had thus become necessary for Parliament to ensure that public awareness was made a priority. Skills development and education of the disabled also needed to be tackled. Social abuse of the disabled must be challenged while rehabilitation and habilitation of persons with disabilities must be addressed in accordance with the Convention. Employment and economic empowerment of persons with disabilities were issues that had to be seriously addressed. Government in partnership with the private sector had not done enough to ensure fair representation of persons with disabilities in the economic sector.

The meeting was adjourned.