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Caregivers of Persons with Disabilities-A Commentary on the Law in Kenya

Maina W. Joyce 2Ndimbii N. James 3Ndirangu W. Christine


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Abstract
Caregivers are individuals, often relatives in the context of disability, who are responsible for the most
basic needs and daily care of persons living with intellectual or severe disabilities. Owing to this codependency, the realization of the rights and privileges, as well as the equalization of opportunities for
the aforementioned group of persons living with disability intended in the Persons with Disability Act
2003, is reliant on caregivers. This commentary systematically discusses aspects of the eights parts of the
Act highlighting the strengths, areas of improvement and recommendations with respect to care giving
on selected sections. It notes that while the provisions for PLWD in law is evidence of goodwill, the lack
of acknowledgement or recognition of the significance of caregivers ensures further marginalization of
persons with severe/intellectual disabilities. The discussions also indicate the need to provide oversight
on the institutions established by the act alongside their specific mandates and to revise the incentives,
offences and penalties to promote adherence to the law. Its recommendations may be assigned as
functions to a proposed council of caregivers.

Key Words: Caregivers, Carer, Disability, PLWD, Act, Law

1 Program Director, Community Network of Caregivers, P.O. Box 20102-00100 Nairobi, email: 8wangui@gmail.com
2 Psychologist & Research Scientist, CREST Consultants, P.O. Box 841-00242 Kitengela, email: jndimbii@gmail.com
3 Senior Legal Officer, Haki Mashinani, P.O. Box 41146-00100 Nairobi, email: kristiewanjugu@gmail.com

February 2015
Introduction
Across different literature, individuals who look
after children, patients, elderly or persons living
with disabilities (PLWD) are referred to as
caregivers. In the context of disability, the
caregivers are often family relatives,
distinguished as primary carers, who acquire
the responsibilities of care giving often with no
prior foresight that would prompt a plan and or
psychological preparation. Therefore, where the
nature of the disability can only be managed,
studies have found high levels of anxiety among
the ageing caregivers and a concern for the
future among the sibling caregivers (Davys,
2011; Taggart et al., 2012). This emotional strain
is further compounded in Kenya and the wider
African setting, where caregivers are
stigmatized along cultural and religious reasons
within their societies (Gona et al., 2011).
The role of caregivers also generates a lot of
stress owing to the greater than average
demands exerted on their finances (Sandy et al.,
2013). PLWD often require various assistive
aides, specialized and or frequent medical care
and special education as basic necessities which
are expensive. In addition, caregivers who suffer
from psychological stresses and or physical
strain in having to support PLWD on a daily
basis, also incur additional medical expenses
(Geere, 2012). Further, since the responsibilities
of care giving are time consuming, primary
carers
are
excluded
socioeconomically,
entrenching them in poverty (Brehaut, 2009;
Dalal, 2010).
Invariably, the wellbeing of caregivers that is
influenced significantly by the emotional and
financial constraint resulting from their
responsibilities affects the quality of life of the
PLWD. It is therefore imperative to identify the

available or potential institutional support from


which caregivers may benefit (Wei et al., 2012).
In light of this, the commentary examines the
sections of the Persons with Disabilities Act
2003
with
the
aim
of
proposing
recommendations for its amendment with
respect to care giving.
Background
The Persons with Disabilities (PWD) Act of
Kenya was first assented on 31 st December 2003
and commenced in on 16th June 2004. After the
promulgation of the new constitution in Kenya,
it newly incorporated sections 22, 23, 24, 53 (1),
35 (2), 39 and 40 through which infrastructure
that eases the mobility of PLWD is promoted;
enables the communication so they can access
information readily as well as additional tax
reliefs in recognition of their economic
disadvantage.
This revised PWD Act 2003, is divided into eight
parts and has a total of forty-nine sections. It
establishes two institutions namely, the
National Council of PWD and the National Fund
for Persons with Disabilities. It also outlines the
rights and privileges of PLWD lending weight to
the civic rights of persons with disabilities. In its
last three sections, it makes provisions for
reliefs and incentives, offences and penalties as
well as miscellaneous guidelines. Comments on
specific sections of each of the eight parts are
provided.
Part I: Preliminary [Sections 1-2]
According to the Act, disability means a
physical, sensory, mental or other impairment,
including any visual, hearing, learning or
physical incapability, which impacts adversely
on social, economic or environmental
participation. This definition is comprehensive

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Citation:
Maina, W. J., Ndimbii, N. J. and Ndirangu, C. W. (2015) Caregivers of Persons with Disabilities-A Commentary on the Law in Kenya. Located at the
Kenya National Library

February 2015
since it mentions common senses in which
impairments occur and in particular mental
impairments which often result in the most
dependent forms of disability. Nonetheless, the
aforementioned reference may be better
revised to read intellectual impairment owing
to its negative connotations that the word
mental elicits within the Kenyan society and
because it does not distinguish disability from
mental health conditions such as schizophrenia
whose patients would require unique provisions
in law to adequately protect their rights.
At the same time, while the necessity of
caregivers is implied by acknowledging
intellectual forms of disability, this legislation
fails to recognize primary carers throughout the
document. Consequently, this Act only protects
the rights and privileges of PLWD of high and
further marginalizes persons with the most
severe forms of disability. The former, who can
be capacitated and employed are entitled to the
five per cent reserved employment positions, a
privilege not accorded to the caregivers of
latter, who cannot work in their lifetime. It is
therefore important to define primary
caregivers to reflect that they are unpaid
individuals, often relatives who are responsible
for the day-to-day care of persons with special
needs.
Part II. National Council of Persons with
Disability [Sections 3-10]
This part establishes the national council of
persons with disability (NCPWD) further
describing functions and mechanisms for
accountability but can be strengthened in
section seven and ten respectively. NCPWD is
often also referred as the council whose
constitution is described in section 4 of the Act.
There is an effort to diversify representation in

the membership of the council whose maximum


number should not exceed twenty seven and
twenty of whom must be PLWD. Ten among the
twenty slots should be reserved for caregivers
among whom a total of ten PLWD and carers
should be elected from among the registered
PLWD. Nominated ministerial representatives
should have representations from the youth and
gender ministry while non-governmental
institutions or unions that nominate individuals
should have existed for more than five years
and can demonstrate a nationwide reach to at
least 30% of the PLWD in the country.
The pronounced functions of the council
outlined in section 7 are issuing adjustment
orders, formulating measures, policies and the
registration of PLWD and therefore provide
inadequate weight on the economic
empowerment and social support for individual
PLWD at the grassroots. A return on investment
for allocating resources to this kind of
institution should at the very least be marked
against their implementation of and delivery on
evidence based programs that provide
sustainable social protection and poverty
alleviation among an agreed percentage of
PLWD and their caregivers. Functions towards
such objectives should be assigned to the
council at stipulated in the Act.
The council is required to ensure proper
accounting for its finances which should be
reported to the government on an annual basis.
In the same respect, the councils leadership
should hold an annual general meeting during
which it should account for its finances to its
membership of PLWD and their caregivers in its
network. Moreover, in the spirit of the 2010
constitutional provision for public engagement
the council should seek consult and obtain
approval in defining priorities and executing

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Citation:
Maina, W. J., Ndimbii, N. J. and Ndirangu, C. W. (2015) Caregivers of Persons with Disabilities-A Commentary on the Law in Kenya. Located at the
Kenya National Library

February 2015
activities above an agreed amount or
percentage from the general assembly of its
membership. The quorum for accepting
activities
should
be
representative
geographically and announced at least three
months before being convened to provide an
opportunity for all PLWD to participate.
Part III. Rights and Privileges of Persons with
Disability [Sections 11-28]
This part of delves into the themes of
education, health, sports but mainly
highlighting the governments role in facilitating
the full realization of rights of PLWD in
employment and infrastructure across society.
In order to promote compliance of the law
within private sector, for instance, the Act
provides some incentives in section 16 for
employers to engage PLWD. Therefore the
inadequacy of the law in further ensuring the
full realization of the rights of persons with
intellectual, with equal proactive measure, is
glaring. To address this gap, the title of part III
should acknowledge the Rights and Privileges
of Persons Living with Disabilities and their
Primary Caregivers. At the same time, while
there is a need to define the maximum available
resources that government should provide to
address disability concerns as a percentage of
the budgetary allocation, the scope of the
objective of section 11 also needs to extend to
caregivers.
It is imperative to note that PLWD who are
dependent on their primary caregivers may
never be employable in their lifetime. Against
this rationale, sections 12-17 that cover
employment should provide access for
caregivers to the 5 percent employment
reservation for PLWD, include them in the tax
exemptions on their incomes (to a maximum

agreed amount) and protect their rights to


employment through flexible working hour
arrangements. The Act should also reward
employers who modify their facilities and avail
special services to accommodate the caregivers
PLWD at their workplace e.g. through tax
deductions. As a result, the key performance
indicator of the council should go beyond
keeping records of job placements to assessing
the success of the institution in securing
meaningful employment and livable wages for
PLWD and their caregivers.
Access to education and health remain key
challenges for PLWD in Kenya despite the
provisions of the Act since 2003. Adherence to
the provisions may be improved by including
specific guidelines, offences and hefty penalties
for non-compliance according to the provisions
within and against specific institutions. This
would mean expounding that not only should,
learning institutions should not deny admission
to a person with a disability to any course of
study, but the governments Joint Admission
Board for higher education in public institutions
should be compelled to reserve 15% of
admission slots for PLWD and young caregivers.
In the same respect, institutions should be
compelled to have nursing centers to enable
caregivers to access education. Public health
institutions should be compelled to provide a
wide range of rehabilitative medical services
beyond physiotherapy such as speech therapy.
Healthcare for PLWD should be subsidized in
private health institutions by government and
hefty fines and penalties imposed for failing to
provide the same. Access to affordable
healthcare for PLWD should be made available
at the county level.
The final section of this part of the PWD Act
2003, covers sports and recreation has the

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Citation:
Maina, W. J., Ndimbii, N. J. and Ndirangu, C. W. (2015) Caregivers of Persons with Disabilities-A Commentary on the Law in Kenya. Located at the
Kenya National Library

February 2015
greatest potential for socially and economically
empowering low ability persons with disability.
It may be expanded to include components of
arts and music thus supporting caregivers in
their caring role.
Part IV. Civic Rights [Sections 29-31]
Although the definition of disability does not
consider the adverse impacts on political
participation... a section of civic rights in the
PWD Act 2003 implies that it is acknowledged.
However, besides voting, accessibility to polling
stations and registrations of or for persons with
disabilities, PLWD and caregivers should have
the right to elect some of their representatives
in the council and to approve the institutions
programs and policies. Their participation
should also be guaranteed by ensuring that
communication on decisions should be provided
at least three months in advance.
Part V. National Development Funds of Persons
with Disability [Sections 32-34]
The National Development Funds of Persons
with Disability in Kenya (NDFDK) is the second
institution established by the PWD Act 2003 in
Kenya. In this part, NDFDKs sources of funds
and trustees are outlined further specifying
individuals to whom its funds are payable to
including single parents with children with
disabilities and who cannot therefore seek
employment but can more appropriately be
termed as caregivers to encompass even
siblings of PLWD. More simply, the function all
cash transfer to all PLWDs should be the
responsibility of the NDFDK in order to increase
accountability. Second, all PLWD and their
primary caregivers who are unemployed should
have access to the funds.

Part VI Part VIII [Sections 35-49]


Sections 35-49 are categorized into three parts
namely reliefs & incentives, miscellaneous and
offences & penalties. Caution should be applied
in the offence of concealing PLWD
distinguishing the practice based on intention in
situations where persons with severe disabilities
are unable to accompany their caregivers to
their places of employment.
Conclusion
The provisions of this act aim to achieve the
equalization of opportunities for PLWD but are
wanting in fair representation and protection of
the rights of persons with severe or intellectual
disabilities. In order to address this concern, this
commentary
deliberately
attempts
to
acknowledge caregivers and recognize their role
in determining the quality of life of the most
dependants
PLWD.
It
recommends
strengthening the National Council of Persons
with Disability and the National Development
Fund for Persons with Disabilities by including
caregivers in and electing a quota of the
composition of the council and board of the two
institutions. Further, the policies and programs
of the council should be approved PLWD and
the caregivers. Against this background, this
commentary proposes the establishment of a
council of caregivers through the PWD Act
2003 assigned to oversee the realization of the
rights and privileges; fair representation and
participation in decision making in select
institutions; economic empowerment of all
PLWD and therefore greater accountability from
the government, NDFDK and the council.

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Citation:
Maina, W. J., Ndimbii, N. J. and Ndirangu, C. W. (2015) Caregivers of Persons with Disabilities-A Commentary on the Law in Kenya. Located at the
Kenya National Library

February 2015
References
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Health Among Caregivers of Children With Health Problems: Findings From a Canadian Population-Based
Study. American Journal of Public Health, 99 (7) pp. 1254-1262
Dalal, K., A. (2010) Disability-Poverty Nexus: Psycho-Social Impediments to Participatory Development.
Psychology & Developing Societies, 22 pp.409-437
Davys, D., Mitchell, D., Haigh, C. (2011) Adult sibling experience, roles, relationships and future concernsa review of the literature in learning disabilities. Journal of clinical Nursing, 20 (19) pp. 2837-2853
Geere, J., Gona, J. Omondi, F. Kifalu, M. Newton, C. Hartley, S. (2012) Caring for children with physical
disability in Kenya: potential links between caregiving and carers physical health. Child Care Health
Development, 39 (3) pp. 381-392
Gona, K. J., Mungala-Odera, V., Newton, C. R. Hartley, S. (2011) Caring for children with disabilities in
Kilifi Kenya: what is the carers experience? Child Care Health Development, 37 (2) pp. 175-183
Persons with Disability Act Chapter 133 (Revised 2012) Act No. 14 of 2003, L.N. 64/2004, Act No. 8 of
2009, L.N. 182/2009
Sandy, P.T., Kgole, J.C., and Mavundla, T.R. (2013) Support needs of caregivers: case studies in South
Africa. International Nurses Review, 60 (3) pp. 344-350
Taggart, L., Truesdale-Kennedy, M., Ryan, A. and McConkey, R. (2012) Examining the support needs of
ageing family carers in developing future plans for a relative with an intellectual disability. Journal of
Intellectual Disabilities, 16 (3) pp. 217-234
Wei, Y., Chu. H., Chen, C., Hsueh,Y., Chang,Y., Chang, L. and Chou, K. (2012) Support groups for caregivers
of intellectually disabled family members: effects on physical psychological health and social support.
Journal of Clinical Nursing, 21(11) pp. 1666-1677

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Citation:
Maina, W. J., Ndimbii, N. J. and Ndirangu, C. W. (2015) Caregivers of Persons with Disabilities-A Commentary on the Law in Kenya. Located at the
Kenya National Library

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