Transcript SERVICE ACCESSIBILITY FOR PEOPLE WITH DISABILITIES …

DISABILITY AND HIV&AIDS:
ACCESSIBILITY TO HIV&AIDS SERVICES BY PWDS IN UGANDA.
A collaborative study between
…….
National Union of Disabled Persons of Uganda (NUDIPU)
& AIDS Information Centre (AIC
Uganda.
By Martin Mwesigwa Babu
Programme Manager HIV&AIDS,
NUDIPU
PRESENTATTION SUMMARY
1. Study Background
2. Overview of HIV&AIDS in Uganda
3. NUDIPU’s HIV&AIDS Programme
4. Partnership Strategy
5. Study findings
6. Benefits of the partnerships with AIC for PWDs
7. Recommendations
8. Conclusion
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Study Background
• 16% disability rate (UNHS, 09/10) approx. 5.12M PWD
currently.
• Disability, HIV/AIDS, and Reproductive health problems
still significant in Uganda.
• Current HIV prevalence in general popn- approx. 6.7%
• PWDs vulnerable to HIV infection (NUDIPU, 2004, ADD study,
2005 ) due
to:
o Endemic poverty
o Discrimination
o General stigmatization
o Sexual abuse (Esp women with physical and mental disabilities)
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Disability, HIV&AIDS in Uganda
• The correlation between poverty and HIV&AIDS in
Uganda is very significant. Persons with disabilities in
Uganda constitute of the poorest of the poor.
• The drivers of the epidemic in Uganda include poverty,
stigma and discriminations, lack of information and
awareness about HIV&AIDS, powerlessness in decision
making and consent to sex by women with disabilities
• Lack of data and statistics on disability and HIV&AIDS,
which results into absence of informed planning for
PWDs in relation to HIV&AIDS.
All the above paints a dire picture for people with
disabilities because all the drivers of the pandemic
mentioned above are evident and resident in the population
of PWDs
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NUDIPU’s HIV&AIDS PROGRAMME
• It is with this background in mind that NUDIPU with
support from our development partners Disabled
People’s Organization Denmark (DPOD) incepted a
programme on Disability and HIV which has been
running for the last 6 years. The two phased programme
was initiated on a pilot basis in 3 districts of Uganda from
2006 – 2009, and later extended in the second phase to
cover 14 districts 2010 - 2012.
• To-date the programme is being implemented in 14
districts of Uganda including Masaka, Kiboga and Mpigi
(Central); Gulu, Kitgum, Pader, Amuru, Lamwo, Agago
(Northern); Kasese, Bushenyi, Rukungiri (Western); Jinja
and Soroti (Eastern).
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MAP OF UGANDA
KITGUM
AMURU
GULU
SOROTI
KIBOGA
KASESE
JINJA
MPIGI
MASAKA
BUSHENYI
RUKUNGIRI
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PARTNERSHIP STRATEGY
The programmes major strategy has been PARTNERSHIPS with
various stakeholders ranging from government (national and local),
HIV&AIDS service providers, Disabled Peoples Organizations, and the
community leaders, elders and faith based organizations.
WHY PARTERNERSHIP?
• Two major reasons:
1. HIV&AIDS is a very challenging subject that encompasses both
professional intensive aspects and social development skills.
2. NUDIPU – as a Disabled People’s Organization does not have the
requisite professional skills needed to provide HIV&AIDS services.
Its mandate is mainly lobbying and advocacy for inclusion of
disability issues and needs into national developments policies and
programmes. Working with ASOs is therefore fundamental the for
the achievement of the development goal of the programme.
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ORGANIZATIONS (ASOs) - AIC
In 2010, NUDIPU and AIDS Information Centre with support from
United Nations Food and Population activities (UNFPA)
undertook a study whose objectives was:
1. Assess Service Accessibility for PWDs at HIV&AIDS and
SRH Service outlets in selected districts of Uganda.
2. Establish existence of policies on PWDs in SRH and
HIV/AIDS service delivery institutions.
3. Determine knowledge of service providers about disability
and how to handle disability issues and needs
4. Packaging of information: is it user friendly to PWDs?
5. Assess attitudes of service providers about PWDs with
regards to access to the services
6. Provide a learning platform for a major HIV service
organisation about PWDs and access to HIV services
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APPROACH & METHODOLGY
• Field research done in November 2010
• Study Areas: Mubende, Oyam and Moroto districts
• 2 Hospitals, 2 HC IV; 12 HC III; 4 HC II; 1 clinic = 21
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Consultations with:
Service providers
PWDs (46 in communities; 9 exit interviews)
Key informants (District and National level)
Community members (FGDs )
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Data collection methods
Desk Review
Personal Interviews
Focus Group Discussions (6 FGDs)
Client exit survey
Health facility (observation) survey
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KEY FINDINGS ON POLICY ENVIRONMENT
The following key aspects were established:
1. Uganda has a very rich legal and policy environment favorable for
PWDs
i.e.
• Uganda ratified the UN CRPD in 2008
• 1995 Constitution provides for equal opportunities
• 2006 Disability Act
• 2005 Disability Policy
• National HIV & AIDS Strategic Plan 2007/8 –2011/12 provides for
PWD issues
• 2004 National Adolescent Health Policy where adolescents with
mental and physical disabilities are key priority group
• Health Sector Strategic Plan, with emphasis on rehabilitative health
for PWD but little on direct service accessibility.
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Key Findings
Despite the existence of enabling
policy framework at national level,
there still exists the major challenge
of poor dissemination,
implementation and enforcement of
the key policies with regards to
provision of health and HIV&AIDS
related services to PWDs
•
“Policies are only on paper. For
example, while sign language is
recognized in the constitution,
government does not pay for
interpreters for deaf people even in
health facilities. If you say health is
for all, and then you do not interpret
for the deaf, how will they
communicate with the health service
provider? (KI, UNAD)
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Key Findings on Policy Framework
Disability issues are not effectively not mainstreamed in District
Strategic Plans and Health Facility work plans: Egalitarian
philosophy assumed
….
“In our approach, we treat everyone that comes here regardless of their
physical state” (Health Personnel, Nadunget Health Centre III,
Moroto District).
“All I know is that HIV/AIDS is an integral aspect in our work plans and we
target the entire community regardless of how they appear – lame or not
lame” (Health Personnel, Moroto Hospital).
Implication: Unique needs of PWD access to SRH/HIV/AIDS not
paid attention to though provided for in national policy frameworks.
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Findings on Accessibility to Service delivery points
1.
2.
Government designs for building health infrastructure require PWD provisions
such as ramps – But of consciousness among constructors and health service
managers and providers about the importance of this is lacking
In some cases provisions do exist but not in use, due to poor construction
An example of a poorly constructed ramp at a Health Centre in Mpigi District
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Findings on Accessibility to Service delivery points
A pathway to a Latrine at one of the Health Centres in Mubende District
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Findings on Accessibility to Service delivery points
A common site in most health centres we visited during the study.
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Perception of PWDs towards appropriateness of physical
infrastructure
54.3
60
50
41.3
Percentage
40
30
20
10
4.3
0
Highly accessible
Moderately accessible
Poorly accessible
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Availability of trained health service providers to handle
PWDs
• No health facility had service providers specially trained or
oriented in handling PWDs.
• Lack of specialized counselors with a bias in disability issues
• Rehabilitative staff (Orthopedic technicians, psychiatric nurses,
physiotherapists) exist in higher level facilities (HCIV & Hospital)
• Lack of skills in sign language and other modes of alternative
communication
All the above were lacking despite the existence of policy provisions
for the same at national level.
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Service provider attitudes towards PWDs who seek
services
• Health workers acknowledge right of PWD to SRH services
• Issue is not so much about negative attitudes but:
o Lack of skills and appropriate facilities
o Insensitivity: Failure to appreciate that PWDs are special
needs people who require special attention: this is sometimes
reflected in Health Workers’ impatience, rudeness towards
PWDs
• Mishandling of PWD most prevalent in maternity services
“The nurse (midwife) tells you to climb a bed and yet she sees you are disabled. If
you hesitate, they will ask you how you climbed the bed to have sex and
conceive…”(KI, UNAD)
• Many people show sympathy/pity for PWDs but in the process
unconsciously stigmatize or exclude them
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Do PWDs feel that they are discriminated by health
workers?
Yes
33%
No
67%
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Availability of PWD friendly packaged information at
Health, HIV and SRH service provision points
• Ministry of Health facilities did not provide information in
alternative formats, i.e. Braile, large format,
• No captions on information in mass media e.g. TV
• Alternative communication for PWD considered expensive by both
private and government institutions. e.g. Braille and other
appropriate formats
• Sign language interpreters not usually employed or available for
BCC/IEC
• Most materials displayed at health facilities; excludes those who
rarely come to health facilities. We never found any IEC material
depicting a PWD.
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Observations
• Ministry of Health facilities do not provide services for PWDs
despite an enabling policy and legal framework at national
level
• Lack of deliberate strategies to target PWD with services at
service delivery level
• Geographical and physical barriers remain a key constraint
to PWDs’ access to existing services.
• Severe communication gaps both at service provider level
and general IEC/BCC on SRH/HIV/AIDS
• Insensitivity among health service providers towards issues
and needs of PWD discourages utilization of services
• Weak networking/linkages between government and CSOs
in the area of disability
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Recommendations
• Collect and collate data on disability and HIV&IADS and PWDs
health status. (to facilitate effective advocacy, programming and
targeting of services).
• Scale up advocacy for dissemination and enforcement of
policies for PWDs e.g. the use of alternative communication on
SRH and HIV/AIDS.
• Develop communication and advocacy strategy on increasing
access to SRH and HIV/AIDS services for PWD (government
and key health services providers)
• Train health personnel to assist with unique needs of PWD at
key service delivery points. Best practice-TASO already trying it
out
• Strengthen monitoring and supervision at service delivery level
to ensure that Article 25 of the CRPD is achieved.
• Include a disability module in the training curricula for health
workers at all levels
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Benefits of the Partnership Study
The following benefits are expected in the medium term as a
result of the study:
• This is a learning opportunity for a major ASO such as AIC on
how to effectively serve PWDs in their programmes
• AICs example shall influence other ASOs to mainstream disability
issues in their programmes. One of the examples so far is TASO
• Influence national health programmes to be disability responsive
• Promote Article 25 of the CRPD on Access to health at national
and local health programming
• Improvement in health infrastructure for better accessibility
• Better opportunities and improved livelihoods for PWDs
The list is endless.
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Concluding Remarks
Ladies and gentlemen,
HIV&AIDS is a very big impediment to social and economic
development all over the world. The developing south has had a
fair share of its consequences as we all know.
PWDs have for long time not been given due attention in various
aspects of development , from education, access to health, and all
the attendant support systems necessary for equitable growth and
development like their non-disabled counterparts.
It is not enough to talk about human rights, without seriously
addressing the health and livelihoods of people with disabilities in
developing countries such as Uganda.
It is now the time to generate critical thinking about the needs of
this section of the population in regards to access to health,
HIV&AIDS and SRH services.
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Acknowledgements
I wish to acknowledge the support of the following organizations
and individuals:
 UNFPA, Uganda Country Office
 AIDS Information Centre
 Makerere Institute of Social Research
Dr. Denis Muhangi (PhD)
N. Asingwire
J. Twikirize
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END
• Thank you
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