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The Role of Caregiver Support Groups and Community Based Rehabilitation in Ghana:
A Case Study
Amy Bruce
January 28, 2016
According to the World Health Organization, approximately 80% of the world’s disabled
population lives in developing countries. Rehabilitation is key to ensuring that persons with
disabilities (PWDs) can live fulfilling, productive lives, but in many of these countries, the
public health system is underfunded, understaffed and overused, creating challenges for
delivering critical care to the people who need it most. In developing countries community based
rehabilitation (CBR) is the model of choice,as it focuses on delivering care to PWDs in their
homes, and on integrating individuals into life in their community.
My study provides a background on disability policy globally, but the focus here is on
Ghana and the interactions between persons with disabilities and the health system. One case
study of a CBR support group for caregivers of children with disabilities, and its effectiveness in
helping caregivers manage their child’s disability in their day-to-day lives, is used to illustrate
these interactions.
A disability is commonly seen as an impairment that prevents a person from doing things
that others in a community can do. The modern understanding of disability moves away from
viewing it as simply an impediment, however, and looks at it as a “dynamic interaction among
specific health conditions and both internal and external environmental factors” (TuakliWosornu & Haig, 2014, p. S50). Disabilities clearly have multiple causes, including a person’s
environment, their activities, their genetic makeup, and their age. PWDs may require a relatively
simple aid such as glasses or a wheelchair, or something as complex as surgery, if they are to
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function on a daily basis. Providing these aids can be done in a variety of ways, depending on the
disability policy, infrastructure and capacity of a country.
At the most simplistic terms disability policy is aimed towards protecting the rights of
people with disabilities. International institutions such as the United Nations have recognized
that those who have disabilities often suffer human rights abuses as a result of their differences,
and have created international policies in regards to PWDs. In 2006, the United Nations adopted
the Convention on the Rights of Persons with Disabilities (CRPD) and its Optional Protocol and
they came into force in 2008 (Oyaro, 2015). These documents outline eight guiding principles
that must be recognized when making policy for persons with disabilities. These include nondiscrimination, accessibility, and the acceptance of persons with disabilities as part of human
diversity and humanity (United Nations [UN], 2006). The CRPD has been praised for
approaching disability from an outward looking societal model (Oyaro, 2015) as opposed to
taking an impairment-focus, but questions have also been raised as to whether Africa should
adopt its own, more specific protocol for PWDs (Oyaro, 2015). Some of the issues encountered
by PWDs in Africa but that may not be found elsewhere in the same combination include the
effects of HIV/AIDS, poverty, resource-scarcity and reference to a cultural context where
disability is often seen as a form of evil.
Disability Policy in Ghana
Ghana is a culturally rich West African nation bordering the Gulf of Guinea on the south,
and Togo, Cote d’Ivoire and Burkina Faso to the North. It has a population of almost 27 million
people who speak approximately 70 languages and is classified by the World Bank as a “middle
income” country. Although its per capita income is increasing (currently sitting at $1,590 USD),
as of 2013 approximately 24.2% of the population lives at or below the national poverty line
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(CIA, 2016). PWDs are more likely to be poor than are their able-bodied counterparts and the
World Bank and World Health Organization estimate a national disability prevalence of between
7% and 12% of the population (Tuakli-Wosornu & Haig, 2014). The majority (64%) of these
PWDs are women, and similar rates are found in both urban and rural areas (Tuakli-Wosornu &
Haig, 2014).
In 2006, Ghana instituted its first national disability policy, the Persons with Disability
Act, which mandated equal employment opportunities, access to public spaces and transportation
for PWDs by 2016. A National Council on Persons with Disability was established, with the
objective of developing and evaluating policy to mainstream PWDs into the national
development process, including creation of a national register of PWDs. Section 31 of the Act
also contains provisions for one of the most critical components of disability care: free access to
specialist and general medical care, rehabilitative operation treatment, and appropriate assistive
devices for PWDs (Government of Ghana, 2006). While this is an admirable goal, the
implementation of these provisions may be one of the government’s biggest failures.
The health system in Ghana is publicly funded, and all Ghanaians are able to enroll in the
National Health Insurance Scheme (NHIS) for a small annual fee, which can be waived if a
person is deemed vulnerable (ex. very poor, pregnant women, elderly). The NHIS, which is the
product of a 2012 consolidation of many district level insurance schemes, had 34% enrollment as
of 2011, the latest year for which data are available(Fenenga et al., 2015). Once enrolled, the
scheme covers treatment and testing for diseases and ailments which make up approximately
95% of Ghana’s disease burden (Fenenga et al., 2015), but rehabilitation is not covered. Thus,
almost all care for PWDs falls under a “pay-as-you-go” scheme, which puts rehabilitative
treatment out of reach for many Ghanaians and means that many PWDs must seek rehabilitation
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from organizations outside of the public health system such as NGOs or religious organizations.
Although Ghana has taken steps in the past to provide treatment to PWDs, it is unclear how the
government plans to implement the 2006 Disability Act’s provisions for free access to medical
care under this current health care model.
Further complications arise in the implementation of disability policy because the
Ministry of Employment and Social Welfare, not the Ministry of Health, is responsible for
disability related programs and policies. From a program implementation viewpoint, this creates
distance between health care workers and the disabled people in a community, as the government
contact for those with disabilities will most likely be a social worker. The majority of PWDs in
the country have no contact with the government at all, however, creating challenges in
implementing any sort of strategy. This administrative structure is such that the government is
focused less on fixing or preventing impairments, and more on caring for people once they are
disabled.
Rehabilitation Strategies in Ghana
Since gaining independence from the United Kingdom in 1957, Ghana has initiated
several national schemes aimed at providing care for PWDs. Institution Based Rehabilitation
(IBR) was the first approach, and by 1970 there was at least one rehabilitation centre in each
region of Ghana (Kuyini, Alhassan, & Mahama, 2011). IBR is a system used in many developed
countries and relies on service delivery by highly specialized staff at a specific location. By the
1980s however, these services were meeting the needs of only about 2% of the disabled
population (Kuyini, et al., 2011), and their services were primarily focused on vocational training
as opposed to care or medical rehabilitation (Tinney, Chiodo, Haig, & Wiredu, 2007). Following
the 1978 declaration of Alma-Ata, which stressed the goal of “Health for All”, the World Health
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Organization had begun to advocate for Community Based Rehabilitation in developing
countries. In 1992 the Ghana Ministry of Health implemented CBR pilot programs in 10
administrative districts (Kuyini, et al., 2011).
Community Based Rehabilitation is a grassroots approach to delivering care to PWDs
that focuses on utilizing existing community resources to care for PWDs in their communities. It
uses five strategy areas to focus its efforts: health, education, livelihood, social, and
empowerment. Along with ensuring PWDs have healthy lives, it also works to help them have
fulfilled lives. Consequently, it also focuses its efforts on vocational training and advocacy to
help PWDs overcome stigma in their communities. At its most basic, the system involves
training a community supervisor about rehabilitation methods, then the supervisor teaches the
family of the PWD these methods, and how to care for them. Success relies on community
involvement, a strong leader, and the support of a PWD’s family members in providing care.
In Ghana, CBR has taken many forms throughout its lifecycle. In the beginning, the
government asked each community to establish a Community Rehabilitation Committee (CRC)
to mobilize local community resources to support the CBR programs (Kuyini, et al., 2011). This
CRC relied on volunteer local supervisors, who received basic training (1-3 weeks) in
rehabilitation. This structure enabled almost anyone who was interested to become a supervisor,
and studies show that in almost all communities the CRC successfully mobilized resources to
help create economic ventures for local PWDs (Kuyini, et al., 2011). Despite these successes,
one study found that this model encountered challenges including but not limited to insufficient
resources, necessitating that supervisors be responsible for more PWDs than recommended; most
volunteers also believed that they should be paid for their work (Kuyini, et al., 2011).
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In 2000 the government asked district assemblies to take on the responsibility of
managing CBR programs with a view to ensuring their sustainability. The national government
officially ceased funding for the programs in 2002-2003, causing a collapse of many of the
administrative structures for CBR programs across the country. It was expected the District
Assembly Common Fund, a portion of national revenues distributed to the district assemblies for
local development projects, would help support the CBR programs, however this was never
formalized at the national level, ensuring great variation across the country. After the funding
stream was officially eliminated, some of programs still continued to receive funding from the
Ministry of Social Welfare until this was exhausted. In a 2011 study, it was found that some
communities still had the administrative CBR structures and CRC committees in place, however
without access to resources they were extremely limited in their community impact (Kuyini, et
al., 2011).
Currently, there is no formal national policy or program for Community Based
Rehabilitation. Since 1995, two percent of the District Assemblies Common Fund is to be
allocated specifically to help PWDs, and organizations for PWDs (OPWDs). The disbursement
of these funds has been highly criticized however because there are guidelines and in many areas
the process is distorted and hidden from the local PWDs. The objectives of the fund do not make
any specific mention of rehabilitation, but do include the provision that the fund can be used to
provide PWDs with access to “technical devices and other assistive devices and equipment”
(NCPD & GFD, 2010, p.4). This is helpful to those who do need assistive devices as they can
make an application to the fund to receive financial support for their purchase, although it clearly
does not solve the issue of providing rehabilitation that should vastly improve the quality of life
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for many individuals. Thus, there is no government funding available for rehabilitation or care,
and if PWDs and their families cannot afford to pay for it, they will not receive it.
Due to a lack of government support for CBR programs the ones which remain are
funded privately through organizations such as churches, mosques, or international donors.
These programs often endeavor to provide their services for free, enabling them to reach a larger
portion of the population. Many organizations have stepped in to fill the gap between what the
government provides to PWDs and the support they need to live healthy, fulfilling lives. The
CBR organization discussed in this study is one such example, and receives its funding from the
Presbyterian Church in Ghana as well as Christian Blind Mission, an international NGO.
In addition to the challenges mentioned earlier with Ghana’s original CBR strategy, the
model is sometimes criticized for being based off a World Health Organization Western-style
ideology in which power and responsibility is given to a single person, in this case the
supervisors, as opposed to being shared throughout the community (Kuyini, et al., 2011). The
strong community based culture of Ghana was not taken into account during the program design.
The main criticism of the model though is that it does not focus enough on one of the biggest
detriments to the quality of life of PWDs in Africa; social stigma surrounding disability.
In Ghana, a “non-biologic, spiritual model of disability” (Tuakli-Wosornu & Haig, 2014,
p. S51) dominates the cultural landscape. Many Ghanaians, both able-bodied and not, see
disability as the result of witchcraft, curses or punishment from God which the disabled person,
or whomever gave birth to them, somehow ‘deserved’. Social stigma surrounding PWDs is
strong and difficult to overcome. In order to help people, CBR workers must first find them
which is often difficult because many families hide their members with disabilities out of shame.
Even if not hidden, the PWDs may choose not to engage with CBR programs because they do
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not want to be seen publicly needing help from able-bodied CBR staff to perform basic activities
(Tuakli-Wosornu & Haig, 2014). These conflicting views create barriers to treatment and
rehabilitation which must be broken down by CBR staff in order for the programs to work.
Presbyterian Community Based Rehabilitation- Sandema, Ghana
Presbyterian Community Based Rehabilitation (PCBR) is an NGO located in Sandema,
the capital of the Builsa North District, in the Upper East Region. PCBR also serves the rural
districts of Builsa South, Kassena Nankana West, and Kassena Nankana East, covering a
population of about 134 000 PWDs. PCBR was established in 1991 by the Presbyterian Church
in Ghana and Christian Blind Mission as a charity to help those affected by river blindness
develop agricultural skills to support themselves and their families. In 1995 it adopted the CBR
model to help improve the health of more people in the region. It is now an organization with 12
part-time and full-time employees, the majority of whom are field officers. The field officers are
all assigned to an area, and perform a variety of tasks there including checking on the PWDs to
ensure that they are healthy, implementing programs and supporting OPWDs. Some staff
members have specialized training in rehabilitation or physiotherapy, and others have degrees in
social work or development studies. All have undertaken some sort of training in rehabilitation.
It is important to note that although it is a faith -based organization, PCBR extends its help to
PWDs of all faiths, and has even previously employed people who did not share the same beliefs.
PCBR is connected to its clients through referrals, word of mouth, and by advertising its
services on media such as the radio. Often, referrals come from health care workers and other
community members, and PCBR also conducts monthly screenings at primary schools in the
region to identify health problems that could turn into disabilities. In cases where further medical
attention is required the organization is supported by the private Presbyterian Health Clinic,
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which is located a hundred meters from the PCBR office. PCBR also refers people to the public
health system when needed for procedures such as surgeries, and will try and help the clients
fund these procedures, as they are often costly and require travel to another city.
PCBR works with clients with a range of disabilities including blindness, cerebral palsy,
physical disabilities, and mental health problems. Its approach involves first addressing the
health issues of its clients, then they can hopefully receive an education, and if this is not
possible PCBR will help them find a livelihood such as sewing, soap-making or agriculture.
Monitoring and follow-up are very important parts of PCBR’s strategy, and it will visit highneeds clients up to three times a week.
PCBR runs a variety of programs including sensitization training, school screenings for
children with disabilities, livelihood training, and support groups. The sensitization sessions
work to educate the able-bodied people in the community about disability, and break down the
social barriers that negatively impact the lives of PWDs. It also works closely with the Disabled
Peoples Organizations (DPOs) of the region, which are independent, volunteer-run organizations
that receive some support from the District Assembly Common Fund, and material support from
PCBR when required. DPOs are part of the CBR structure created by the government, and exist
to help PWDs support each other and learn in a safe environment. Almost all towns in the region
have DPOs, which demonstrates that some parts of the CBR structure are sustainable, even
without governmental support.
This study specifically looks at the support groups PCBR runs for caregivers of children
with cerebral palsy (CP). Cerebral palsy is a non-communicable disease that affects many in the
region, although its cause is unknown. It appears during childhood, a fact that makes mothers a
target for people who are looking for a cause of the disease. Often it is believed to be caused by a
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mother who was unfaithful, or cursed while pregnant. This blame can isolate mothers from their
community and family, which is why PCBR tries to provide them with a support group of people
who have experienced similar situations.
The research for this case study was conducted using a variety of fieldwork methods,
including observational research and discussions with members of the support group. I attended
two formal meetings of the support group in addition to an informal planning discussion. Almost
all of the discussion was done in Buli, the local language, and two CBR staff (David and Joe)
served as translators. All of the caregivers in the group were women, though not all were the
mothers of the children. Many of them attended the support groups with their children, who
ranged in age from about 1 year to 10 years old. The group met once a month at PCBR in the
physiotherapy room to learn about caring for their children and share their stories.
Cerebral palsy can impact the lives of children and their families a little, or a lot. Many of
these families have no interaction with the public health system, so PCBR offers many types of
support for the families depending on what is needed. It may provide equipment to make life
easier such as stools, wheelchairs, or CP Chairs, which are special custom chairs constructed out
of cardboard that assist with using the bathroom. It also provides rehabilitation appliances such
as splints, which can be used to prevent improper development and growth of limbs of children
with CP. Caretakers are taught how to do exercises with their children through home visits and
the CP support group.
The monthly support group meetings began in June 2014, so when I visited in 2015 they
had been running for almost a year. The group was in a transition period however, as the
previous field worker who had been assigned to facilitate it had left two months prior. The
meetings were designed to start with updates on goals that the caregivers had set at the previous
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meeting, followed by physical exercise demonstrations and more goal setting. At the beginning
of every meeting, the leaders of the group took attendance and collected the monthly dues (1
cedi) from the caregivers. This was a new initiative that had only begun within the last two
months and was intended to create a pool of money that the group could access in times of need,
or to invest in new opportunities.
Caring for a child with cerebral palsy or any kind of disability creates many challenges
for a family, not the least of which is economic. The majority of the caregivers also have many
other children they need to support and this can create resentment among the caregivers,
themselves and their family members. Often, they will not see the point in paying school fees to
send a CP child to school, or purchasing items such as diapers, because the child is not useful in
any economic way and cannot help around the house. Additionally, taking care of a child can
prevent family members from farming and contributing to the family income. One of the things
PCBR tries to do is help them understand that this is necessary, and that these children are
equally as valuable as any other child. Through the monthly dues, the CP support group is trying
to create economic opportunities for its members to help ease their financial stress.
The caregivers frequently discussed using the money to buy groundnut (peanut) seeds
that they could plant during the upcoming rainy season. The group’s own funds were insufficient
for this endeavor however, so they were seeking the support of PCBR, but unfortunately PCBR
was having financial difficulties of its own and could not assist. The group hoped that next time
the rainy season comes there would be enough money for this through their contributions, and a
possible appeal to the District Assembly for a share of the Common Fund. PCBR staff agreed to
assist with this appeal as they are often a link between the caregivers of children with disabilities
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and government officials. PCBR staff have much more experience navigating the government
bureaucracy and also have the connections to help influence decisions.
The PCBR staff were frequently questioned about navigating any sort of formal system,
including the health insurance system. Many of the caregivers noted that they were having
trouble registering for the NHIS because it required spending long periods of time waiting at the
insurance registry. This was difficult to do while caring for their children. If the mothers could
not register for the insurance, they would be unable to get even the most basic medical support
for their child, themselves or their other family members. Unfortunately, there was not much that
PCBR staff offered to do to improve the process, and this conversation was ultimately
unsuccessful and inconclusive for the caregivers who were looking for help.
Despite wanting to register for the NHIS, many of the mothers discussed their lack of
trust and confidence in the public health system. This was caused by the blame, inconsistency,
and absence of support they had encountered at public health facilities. None of the women
reported being told that their child had CP by anyone at a hospital and most did not know what it
was until they spoke with a PCBR employee. All of them said that they would not go to a
hospital to receive help with their child, unless he or she had an illness that needed to be treated.
This is consistent with the fact that rehabilitative care is not included under the NHIS, and
therefore there are few trained professionals who can do rehabilitation; however, if the
government wants all PWDs to have access to free medical treatment it must work to make
hospitals a more welcoming place for PWDs and train its employees in disability treatment and
care.
While it may be concluded that the public health system has failed in its duty to provide
care to PWDs, PCBR has been largely effective in its efforts to provide rehabilitation to people
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in its operational area. From an outside perspective it appears that the CP support group has
successfully disseminated knowledge about caring for children with CP to its members, and has
provided them with a strong support network they can turn to. PCBR does, to some extent, help
caregivers navigate government systems, and will provide financial support if possible to those
in need of major aids such as surgery or wheelchairs. Its support could be improved by helping
caregivers obtain health insurance, or financial support from the Common Fund. The
organization could also make use of more staff to check in with clients more frequently, and
ensure that the families are treating the children well, and completing their exercises.
Many of the caregivers were satisfied with the rehabilitation help they received, but still
expressed dissatisfaction with the group overall due to its failure to help them obtain ground nut
seeds or provide them with financial support. While it is understandable that the most pressing
issue for the majority of the caregivers is not rehabilitation for their child but rather whether or
not they will be able to feed the rest of their family, it is sometimes disappointing to see the lack
of priority given to physical exercise demonstrations during meetings. At the end of the day, the
program’s success is in part judged on the caregivers’ satisfaction, but also on the improvements
in the lives of the children.
The CP support group can be looked at as a smaller version of the Ghanaian government
in many ways; in the government, as in a family, there are limited resources, and at times, it is
understandable that the government must make tough choices. This includes choosing what
health insurance can cover, and how much money is available for the PWDs as part of the
Common Fund. The government may be simply following the lead of the majority of its citizens
in not focusing its efforts on rehabilitation for PWDs. The voices of PWDs are certainly not the
strongest in civil society and thus their concerns are easily ignored or overlooked. This is why
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organizations such as PCBR must fill in the gap, and provide the critically needed care to PWDs,
so that they can advocate for their rights themselves.
Globally, it is getting easier to be a person with a disability. With technological
improvements, medical innovations, and vaccines against debilitating diseases, disabilities will
become an easier burden to bear in the future. In the meantime, however, there is much
improvement still needed to help PWDs live their best lives. In Ghana, the government needs to
take action and implement the provisions of the Persons with Disability Act. This will take an
overhaul of the way it currently delivers care, and will require moving away from the previous
volunteer approach to CBR and into a more formalized one. CBR is still the best method that
exists for caring for PWDs, especially in rural areas, as is illustrated by the case study.
The government of Ghana needs to recognize that there are organizations such as PCBR
who are implementing this approach successfully, and provide them with the funding to expand
their programs. National strategies also need to address the social stigma surrounding PWDs and
work to eliminate the non-biologic concepts of disability that keep PWDs hidden in their homes.
Disability is not a reason for anyone to be isolated in their community, and through correct
policy, health care and awareness Ghana can ensure that this does not happen. Successful
development incorporates all members of a society, and persons with a disability have the right
to be included in this process.
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