Disability is not Inability

A Case for A National Disability Health & HIV/AIDS Policy Framework.
12th October 2006.

Policy leadership that sets standards, guidelines and protocol to serve clients with various disabilities is integral to making the environment conducive. there is need for a policy framework that effectively integrates disability into national health and HIV/AIDS programming.

Under its strategic plan and within the mandate of implementing the Persons with Disabilities ACT 2003, the National Council for PWDs has a lot of leadership roles within the National Disability HIV/AIDS management. Leadership for the Council is expressed more in terms of developing a conducive environment for the various disabled organizations and partners to provide access to quality services for the disabled persons.

According to the PWDs ACT 2003, the lack of access for PWDs to health/HIV/AIDS facilities amounts not only to discrimination on the basis of disability but also denial of access.

In Kenya today, HIV epidemic is better understood. New information on the level of infections comes from the first national HIV prevalence survey, the Kenya Demographic and Health Survey (KDHS), which estimates that 7% of adults are infected by the HIV and that the rates in women are nearly double the rates in men. Mirrored on disability and using the 3 million disabled persons in Kenya statistics; it shows that about 10% over 300,000 are living with HIV/Aids.

Section (B) of the Persons with Disabilities Act 2003 states that among the functions of the Council is to formulate and develop measures and policies designed to (part IV) recommend measures to prevent discrimination against persons with Disabilities. The lack of access for persons with disabilities to HIV/AIDS facilities amounts not only to discrimination on the basis of disability but also denial of access.

This applied to HIV/AIDS can be restated to mean that among the functions of the Council is to formulate and develop measures and policies designed to (part iv) prevent discrimination of persons with disabilities within the national HIV/AIDS disaster.

These require specific adjustments of the current policy interventions to integrate the Disabled within a wider framework towards total inclusion. There is need for a coordinating policy framework to mobilize and guide various stakeholders and resources. Lets walk the talk. We need specific guidelines on how to apply policy issues to various cases of disability. The government must lead by the front.

No data on disability to guide interventions and mobilize resources.

It is not known if HIV/AIDS management within the marginalized groups especially the disabled groups has not reached the critical level required to cause required behaviour change as in the general population. What is the prevalence rate of HIV/AIDS among the Disabled? Should we now scale-up with VCT sites and are Mobile VCT services adequate? Do they need more VCT services? Are the Disabled PALWAs found positive during Mobile VCTs accessing ART? Is VCT causing more deaths within the Disabled population due to lack of referral structures in the rural communities? Where are the necessary data to enable justifiable measurable indicators?

This is essentially due to 5 main reasons. A) Lack of data on disability. b) Disability-friendliness Limitations in HIV/AIDS service Delivery structures. c) Lack of supportive policy environment d) poor capacity of DPOs e) lack of strategic guidelines for resource mobilization and M&E.

The few disability programming available are disjointed and lacks neither the necessary policy framework nor statistical backing on disability populations necessary for effective indicator measurements of progress made. National Demographic Health Surveys has no effectively desegregated data on disability. This implies that though we have had AIDS awareness among the disabled, have opened three Deaf VCT sites etc, we do not know what progress has been made. We do not have the premise to scale-up and within which indicator guidelines.

Yet one of the Councils mandate within the ACT is working with relevant government departments, define the number of disabled persons at any one given time.

The National Census has no data on into specific categories of disability. This means that of the figures given of 10 percent of the 30 million Kenyans, it is hard to define how many deaf, blind, physically challenged, Deafblind or mentally handicapped persons there are in Kenya. There is need for the council to take leadership and set up the background for the second National Demographic Health Survey or the next National Population Census to be made disability-friendly.

The National Coordinating Agency for Population and Development NCAPD recently spelt out issues within the Youth and AIDS and interventions being implemented and surveyed. Why can’t we have the same for disability?

What is the impact of a policy guideline?

PWDs face the highest stigma in relation to HIV/AIDS mainly inbuilt from cultural and traditional beliefs which make them more vulnerable. More often than not they are left out during the sensitization and service provision on issues of HIV/AIDs, mainly because service providers do not know how to integrate them into their services interventions.

Section (d) the Council shall provide to the maximum extent possible; i) assistive devices, appliances and other equipments to PWDs – this includes nurses train in sign language to make Hospitals accessible and VCT counselors that know KSL or working with blind. ii) Access to available information and technical assistance to PWDs. Interventions to overcome Communication barriers within Health facilities are being funded by various partners in uncoordinated manner. There is no specific definition of standards, where the service providers are providing either disability sensitive services at what quality, where and how many more are needed?

PWDs need information on HIV/AIDS in a manner accessible to them yet there is no policy or strategy guideline to mobilize stakeholders in a coordinated manner; PWDs need information that will enable them cope when affected or infected. Voluntary Counseling and Testing (VCTs) just like Health centre need to be made disability friendly. Able-bodied will need to be informed on the plight of PWDs living with HIV/AIDS to enable them provide quality counseling/care/treatment services. There is need for policy guidelines to guide interventions to be made disability-friendly.

The Council is at the strategic position to build the guideline that will enable mobilize more service providers to provide quality disability-friendly services but also to mobilize resources to be channeled to servicing the disabled in Kenya. All that is needed is a policy guideline.

As a National Disaster in Kenya National HIV/AIDS management strategy 2006 – 2010 needs to be able to reach all the Groups including the vulnerable groups especially Persons with Disabilities.

The National Aids Control Council (NACC) developed the Kenya National HIV/AIDS Communication Strategy to facilitate and guide multisectoral communication programmes that address the full HIV/AIDS prevention, Care and Support continuum in a social, cultural and environmental context. The strategy guides all national communication campaigns including communication Campaigns with persons with communication disabilities. Yet there are no communication guidelines for sensory-communication disabled persons to access service to national health facilities that provide the backbone of many important health services. Status of disability and Health in Kenya.

One Monitoring and Evaluation Strategy.

The Kenya National HIV/AIDS Strategic Plan (KNASP) 2005/6 – 2009/10 is a big improvement from the strategic plan previous 2000-2005 mainly in the intervention needs. The lessons learnt from the past are likely to be used to give disability better opportunities in the new plan. Various interventions by local and international partners and DPOs have no informed joint policy to integrate disability within the HIV/AIDS management programming. The three ones – one coordinating organization, one strategic plan and one M&E strategy should effectively include the disability interventions.

Does the disability HIV/AIDS programme integrate into the monitoring and evaluation framework defined by the (KNASP) 2005/6 – 2009/10?

The NACC through its stakeholders forums under Joint HIV/AIDS Programme Review (JAPR) includes one for the disability community. The 2006 forum was held in September 2006. It is a participatory-forum where specific indicators according to the national KNASP 2005-10 are reviewed from a disability context. It assumes quite a lot. It depends a lot on the HIV/AIDS programmes currently running within the status quo.

KNASP 2005/6-10 goal is to reduce spread of HIV, improve the quality of life of those infected and affected and mitigate the socio-economic impact of the epidemic among the disabled communities as one of the vulnerable groups.

There is need for integration in the ONE monitoring and evaluation strategy used within the national HIV/AIDS management. The cross-cutting themes for strategic M&E integration to ensure achievement of the priority areas include strategic partnerships with disabled persons organizations, multi-sectoral approaches, mainstreaming of disability issues in inter/national process, evidence-based and within a participatory approach.

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