Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their families in Ghana

1. REPORT
ON THE LEVEL OF STIGMATIZATION, DISCRIMINATION
AND EXCLUSION OF PERSONS WITH INTELLECTUAL
DISABILITY AND THEIR FAMILIES IN GHANA
JULY 2011

2. REPORT
ON THE LEVEL OF STIGMATIZATION, DISCRIMINATION
AND EXCLUSION OF PERSONS WITH INTELLECTUAL
DISABILITY AND THEIR FAMILIES IN GHANA
JULY 2011

4. PROFILE
I nclusion Ghana (IG), a member of Inclusion International, is a network organisation working to reduce
stigmatization and ensure full inclusion of all persons with intellectual disability and their families by
advocating for their rights and needs. IG envisions equal opportunities and inclusion for all persons with
intellectual disability in Ghana.
Intervention Areas
The four (4) key intervention areas for Inclusion Ghana are:
Training
 Strengthening the capacity and existing institutional and organizational structures of member
organisations to support their quality service delivery to persons with intellectual disability and their
families
Research
 and promoting research that will improve the lives of persons with intellectual disability
Identifying
and their families
Education
 an authoritative body of intellectual disability information and knowledge
Maintaining
 proactive community outreach and education of member organisations
Supporting
 accessible and relevant information that supports stakeholder ability to make informed
Providing
choices
Advocacy
 for inclusion, and participation in all aspects of life for persons with intellectual disability
Advocating
and their families
 informing, influencing, guiding and developing public policy at the community, regional
Proactively
and national levels
 court action or other initiatives by parents of persons with intellectual disability to demand
Supporting
their children's rights
For more information about Inclusion Ghana, its work, activities and membership,
contact:
Inclusion Ghana
#24 Feo Eyeo Link, North Industrial Area
P.O. Box GP 20950
Accra-Ghana
Telephone: +233 (0) 30 224 3291 / (0) 20 815 1523
Email: info@inclusion-ghana.org
inclusionghana@yahoo.com
Website: http://inclusion-ghana.org
i

5. ii

6. FOREWORD
D
espite numerous conferences and expert consultations on disability and human rights issues,
and the passing of the Disability Law (Act 715) in 2006, which prohibits stigmatization,
discrimination and exclusion of persons with disabilities, relatively little is done in the area of
intellectual disability. For this reason Inclusion Ghana conducted this study to measure the level of
stigmatization, discrimination and exclusion of persons with intellectual disability (PWID) in Ghana with
a view to advocating for their rights and explore areas in intellectual disability in which more research
would be beneficial.
Intellectual disability is the most stigmatized disability among several disabilities in Ghana. More than
other types of disabilities; strong social, religious and cultural stigma are associated with it. It is estimated
that PWID constitute the third (3rd) largest category of Persons with Disabilities in Ghana (Ghana
National Disability Policy Document, 2000). In Ghanaian communities, PWID are perceived to be
dangerous to themselves and others. Therefore they are often excluded from mainstream society and
denied any life opportunity due to a belief that they are dangerous and fully incapable of performing
intellectual activities.
This report echoes the challenges Persons with Intellectual Disability and their families go through on a
daily basis. The report also highlights various recommendations made by parents and independent
leaders on the way forward. The Special Education Division of the Ghana Education Service, with the
mandate of providing equitable and quality educational opportunities for all children with special needs
and disabilities, supports recommendations made in this report.
It is hoped that the content of this report, if utilized, can serve as relevant and reliable reference material
for research, advocacy and other development-oriented policy actions on behalf of persons with
intellectual disability. This report may also serve as material for guiding policy formulation and making
other regulatory decisions for the future development and integration of PWID into the community.
Thomas Patrick Otaah
Deputy Director (formerly Head of Unit for PWID)
Special Education Division
Ghana Education Service
iii

7. iv

8. ACKNOWLEDGEMENTS
M
any hearts and minds contributed in diverse ways in making this study a successful one. To all
of them we say thank you.
The dedication and extra working hours put in by the compilation team is acknowledged and highly
applauded. We are also indebted to the Board of Inclusion Ghana for their technical input and advice
throughout the study.
Inclusion Ghana wishes to express profound gratitude to DANIDA and LEV National Association for
their financial and administrative support. We also thank VSO for their support by allocating an
International Volunteer named Krista van Weelden to Inclusion Ghana to help in this study.
We would like to register our recognition of and great appreciation for the involvement of field personnel
of all of our member organisations who helped us to identify some parents of persons with intellectual
disability and independent leaders in the selected study areas namely Upper East, Greater Accra, Volta
and the Brong Ahafo Region. The list of independent leaders who were interviewed can be found in
annex 3.
Last but not least, thanks goes to parents and families of persons with intellectual disability who took time
to talk courageously and share their sometimes emotional experiences with us. Because of the stigma we
sensed during the interviews, it was decided to do their interviews anonymously. It is only through their
testimonies and accounts that we can begin to understand the level of stigmatization, discrimination and
exclusion of their children. It is to them, persons with intellectual disability that this study is dedicated.
Compiled and Edited by:
Auberon Jeleel Odoom
Krista van Weelden
v

9. ACRONYMS
CDC Center for Disease Control and Prevention
CDD Centre for Democratic Development
CWID Children With Intellectual Disability
DANIDA Danish International Development Agency
ESP Education Strategic Plan
EFA Education for All Agenda
FAS Fetal Alcohol Syndrome
FCUBE Free Compulsory Universal Basic Education
GDP Gross Domestic Product
GES Ghana Education Service
GFD Ghana Federation of the Disabled
GHS Ghana Health Service
GoG Government of Ghana
GPRS Ghana Poverty Reduction Strategy
GSS Ghana Statistical Service
ID Intellectual Disability
IE Inclusive Education
IEP Individualised Education Plan
MOE Ministry of Education
MOH Ministry of Health
NARC National Assessment and Resource Centre
NCPD National Council on Persons with Disability
NGO Non-Governmental Organization
NHIS National Health Insurance Scheme
OPWD Organisations of Persons With Disability
PWD Persons With Disability
PWID Persons With Intellectual Disability
SEN Special Educational Needs
SPED Special Education Division of the Ghana Education Service
UN United Nations
UNESCO United Nations Educational, Scientific and Cultural Organization
VSO Voluntary Services Overseas
WHO World Health Organisation
vi

10. TABLE OF CONTENTS
PROFILE................................................................................................................................................................................... i
FOREWORD………………………………………………………………………………………......................................iii
ACKNOWLEDGEMENTS..…………………………………………………………………………………..........……....v
ACRONYMS………………………………………………………………………………………………….......………...vi
TABLE OF CONTENTS…………………………………………………………………………………............………...vii
LIST OF FIGURES…………………….………………..……………………………………….………...........................viii
LIST OF ANNEXES………………………………………………………………………………............………...............ix
EXECUTIVE SUMMARY………………………………………………………………………...........……………….......x
1 INTRODUCTION ............................................................................................................................................ 1
1.1 Profile of Ghana..........................................................................................................................1
1.2 The Disability Situation in Ghana............................................................................................2
2 RESEARCH QUESTION AND OBJECTIVES ............................................................................................ 3
3 DEFINITIONS AND LITERATURE............................................................................................................. 4
3.1 Intellectual Disability................................................................................................................. 4
3.1.1 Down Syndrome ................................................................................................................... 4
3.1.2 Autism .................................................................................................................................. 4
3.2 Stigma, Discrimination and Exclusion .................................................................................... 5
3.2.1 Stigma ................................................................................................................................... 5
3.2.2 Discrimination and Exclusion ..............................................................................................5
4 METHODOLOGY ............................................................................................................................................ 6
4.1 Research Sites..............................................................................................................................6
4.1.1 Brong Ahafo Region .............................................................................................................. 6
4.1.2 Upper East Region ................................................................................................................ 6
4.1.3 Volta Region ......................................................................................................................... 6
4.1.4 Greater Accra Region............................................................................................................ 6
4.2 Sample Size ................................................................................................................................. 6
4.2.1 Independent leaders and Specialists...................................................................................... 7
4.2.2 Parents/Caretakers of PWID ...............................................................................................8
4.3 Research Design .........................................................................................................................8
5 KEY FINDINGS: A grim picture with glimmers of hope ....................................................................... ..9
5.1 Profile of Parents Respondents and their Children...............................................................9
5.2 Awareness of Intellectual Disability Issues .......................................................................... 10
5.2.1 Causes of Intellectual Disability .........................................................................................10
5.2.2 Treatment or Cure of Intellectual Disability ...................................................................... 11
5.3 Inclusion of Persons with Intellectual Disability in Ghanaian Society ............................12
5.3.1 Inclusive Education / Special Education ............................................................................ 12
5.3.2 The Health Care System...................................................................................................... 15
5.3.3 Assessment of Persons With Intellectual Disability .........................................................16
5.3.4 Employment ........................................................................................................................18
vii

11. 5.3.5 Marriage and Family Life ................................................................................................... 19
5.3.6 Social Life & Participation in the Family and Community................................................ 21
5.3.7 Participation in Church and Mosque activities .................................................................. 21
5.4 Discrimination and Stigmatisation of PWIDs in Ghana..................................................... 22
5.5 Existence and Implementation of Disability Policies & Strategies targeted at PWIDs .. 23
6 CHANGING ATTITUDES ........................................................................................................................... 26
6.1 The Role of Government ......................................................................................................... 26
6.2 The Role of the Media.............................................................................................................. 27
6.3 The Role of Parents .................................................................................................................. 28
6.4 The Role of PWID themselves ................................................................................................ 28
6.5 The Role of NGOs .................................................................................................................... 29
7 CONCLUSION ............................................................................................................................................... 30
8 RECOMMENDATIONS: Opening New Doors to PWID and their Families ................................... 31
8.1 Meeting the Needs of Parents and Families of PWID ........................................................ 31
8.2 Implementation and Improvement on Government Policies ............................................ 31
8.3 Media Intervention .................................................................................................................. 32
8.4 The Community is key ............................................................................................................ 32
9 FURTHER RESEARCH ................................................................................................................................. 33
REFERENCES .......................................................................................................................................................... 34
LIST OF FIGURES
Figure 1: Distribution of interviewees per region........................................................................................... 7
Figure 2: Disabilities of Children …………………………………………………………………….……... 9
Figure 3: Age of children at diagnoses……………………………………………………………….……... 9
Figure 4: Marital Status of Parents………………………………………………………………………….. 10
Figure 5: Causes of ID ………………………………………………………………………………………. 11
Figure 6: Treatment or Cure of ID…………………………………………………………………….…….. 12
Figure 7: Education of PWID ……………………………………………………………………….………. 14
Figure 8: Difficulty of getting good education for PWID ………………………………………..………. 14
Figure 9: Difficulty of getting good health care support for PWID..………………………….…………. 16
Figure 10: The side view of the NARC……………………………….…………………………………….. 17
Figure 11: The back view of the NARC………………….………………………………………….……… 17
Figure 12: Difficulty of getting employment for PWID …………………………………………….……. 18
Figure 13: Parents perception of discrimination in employment............................................................... 19
Figure 14: Difficulty of getting marriage for PWID ………………………………………………….…... 20
Figure 15: Perception on whether PWID should be able to get married………………………….…… 20
Figure 16: Difficulty of participation in Church or Mosque……………………………………….……... 22
Figure 17: Perception of discrimination against PWID in Ghana ......……………………………….…. 23
Figure 18: Level of awareness of any legislation for PWID ……………………………………..………. 24
Figure 19: Improve Inclusion by Government……………………………………………………..………. 26
Figure 20: Improve Inclusion by Media……………………………………………………………..…….... 27
Figure 21: Improve Inclusion by Parents…………………………………………………………..……….. 28
Figure 22: Improve Inclusion by PWID themselves…………………………………………….………... 29
Figure 23: Improve Inclusion by NGOs…………………………………………………………….………. 29
viii

12. LIST OF ANNEXES
Annex 1: Questionnaire - Parents/Caretakers…………………………………………………………36-42
Annex 2: Questionnaire - Independent Leaders/ Specialists………………………………...………43-47
Annex 3. List of Respondents – Independent Leaders / Specialists………………………...………48-49
Annex 4: List of Special Schools and Integrated Schools……………………………………………..50-51
ix

13. EXECUTIVE SUMMARY
I nclusion Ghana (IG), a member of Inclusion International, is a network organisation founded in 2009,
working to reduce stigmatization and ensure full inclusion of all persons with intellectual disability and
their families by advocating for their rights and needs.
Persons with Intellectual Disability or ''mental retardation'', as it is called amongst most Ghanaians, are the
hardest hit victims of negative labeling when it comes to Persons with Disabilities (PWDs). For example,
persons with down syndrome in Ghana are believed to be children given by the river gods, and hence people
call them “Nsuoba”, meaning 'water children'. There are many stories about children with intellectual
disabilities who are “given back to the water”. In Northern Ghana exists a widespread belief in “spirit children”. It
is believed that some children, known as spirits or “Kinkirigo” have been sent to bring harm to a family and are
not meant for this world. Following from this religious-cultural thinking about intellectual disability and the
lack of initiatives from the government to improve inclusion of PWID in Ghana, they face several barriers and
forms of stigmatization, discrimination and exclusion. Traditionally, more focus has been placed on finding
out and obviating the causes of intellectual disability and less on improving the living conditions of PWID.
This has resulted in the marginalization of PWID and their exclusion from enjoying equal opportunities in all
spheres of life.
A lack of data in this area inspired Inclusion Ghana to do a baseline study in four regions in Ghana to measure
the level of stigmatization, discrimination and exclusion of PWID and their families. The study involved
parents/care takers of PWID, independent leaders and specialists in the field of Intellectual Disability. A total
number of 69 leaders/specialists and 53 parents were interviewed in the four regions in Ghana.
This report describes the outcome of the study conducted by Inclusion Ghana. We give an overview of actual
data that were measured, outcomes of observations we did and make recommendations to address particular
areas of concern.
In all the research sites, significant levels of stigmatization, discrimination and exclusion, both overt and
covert, were identified in education, employment, health care, and social life. Widespread and enduring
changes in social attitudes are required if we are to make headway against ID-related stigma, discrimination
and exclusion. Bringing about such change requires mobilizing many different stakeholders, including
parents of PWID, friends and families; religious and traditional leaders, legal and civil rights groups, non-
governmental and community-based organizations, the business community and workers' organizations;
doctors, politicians, nurses and health-care workers, teachers, youth leaders, women leaders and social
workers, and the police. Additionally, links need to be made with broader struggles that address underlying
economic, social, cultural and political inequalities. If effective responses to ID-related stigma and
discrimination are to be promoted, work has to be done simultaneously on several fronts: communication and
education to encourage better understanding of ID; action and intervention to establish a more equitable
policy context; and legal challenge, where necessary, to bring to account governments, employers, institutions
and individuals.
We are hopeful that this report will contribute to further advocacy for the rights and needs of PWID and their
families in Ghana and hope nobody will hesitate to use the information for any activity in this area. If you do
so, we would appreciate a referral to this report and Inclusion Ghana.
x

14. 1 INTRODUCTION
Inclusion Ghana (IG), a member of Inclusion International, continuous obstacle to the inclusion of PWID in the society,
is a network organisation founded in 2009, working to because within such a belief system it is difficult for any
reduce stigmatization and ensure full inclusion of all interaction to occur between the “abled people” and
persons with intellectual disability and their families by PWID. In many cases, PWID living on the street have been
advocating for their rights and needs. rejected by their own families.
One may ask is the mission statement of Inclusion Ghana A lack of data in this area inspired Inclusion Ghana to do a
relevant to the Ghanaian society? Yes in Ghana, as baseline study in four regions in Ghana to measure the
elsewhere in Africa, traditional beliefs, culture, and social level of stigmatization, discrimination and exclusion of
status have interacted and influenced people's perception PWID and their families. This report describes the outcome
and attitude towards Persons with Intellectual Disability of the study conducted by Inclusion Ghana. We give an
(PWID). Intellectual Disability is often perceived as a curse overview of actual data that was measured, outcomes of
or punishment for sins committed by parents of the observations we did and make recommendations to
PWIDs. In the Ghanaian society, pregnancy and birth are address particular areas of concern. We are hopeful that
highly regarded as a blessing and are characterized with this report will contribute to further advocacy for the rights
high expectations. There is no good reason a family can and needs of persons with intellectual disability and their
give to explain why a child is born with an intellectual families in Ghana and hope nobody will hesitate to use the
disability except that the anger of the gods has been visited information for any activity in this area.
on them.
1.1 Profile of Ghana
Persons with Intellectual Disability or ''mental The Republic of Ghana is located on the Southern Coast of
retardation'', as it is called amongst most Ghanaians, are West Africa. The GDP per capita of Ghana is US $ 1100
the hardest hit victims of negative labeling when it comes (World Bank, 2011), and 40% of the adult population lives
to Persons with Disabilities (PWDs). Two tribal groups, the on less than US $2 per day. Ghana was the first black
Ewes and the Gas, refer to them as “Asotowo” (idiot or fool) African nation in the region to achieve independence from
and “Buluus” (reduced mental abilities) respectively. The a colonial power, in this instance Britain. Ghana has a
Akans label persons with intellectual disabilities as “Nea current total population of 24, 223,4312 of which more than
wanyin agya n'adwene ho” which means 'feeble minded', 37 % are under the age of 14 with a life expectancy of 57
which are perceived as offensive and dehumanizing labels, years and a child mortality of 18/1000 (< 5 years).
equated with insults. Persons with Down Syndrome in
Ghana are believed to be children given by the river gods, Ghana's population is concentrated along the coast and in
and hence people call them “Nsuoba”, meaning 'water the principal cities of Accra and Kumasi. Ethnically, Ghana
children'. There are many stories about children with is divided into small groups speaking more than 50
intellectual disability who are “given back to the water1”. In languages and dialects. Among the more important
Northern Ghana exists a widespread belief in “spirit linguistic groups are the Akans, which include the Fantis
children”. It is believed that some children, known as along the coast and the Ashantis in the forest region north
spirits or “Kinkirigo” have been sent to bring harm to a of the coast; the Guans, on the plains of the Volta River; the
family and are not meant for this world. Ga- and Ewe-speaking peoples of the south and southeast;
and the Moshie-Dagomba speaking tribes of the northern
Following from this religious-cultural thinking about and upper regions. The official language is English,
intellectual disability and the lack of initiatives from the however many of the poorest people are illiterate and
government to improve inclusion of PWID in Ghana, they therefore do not understand or use English, the official
face several barriers and forms of stigmatization, language. The different linguistic groups often have their
discrimination and exclusion. Traditionally, more focus specific beliefs and superstitions.
has been placed on finding out and obviating the causes of
intellectual disability and less on improving the living Primary and junior high school education is tuition-free
conditions of PWID. This has resulted in the and mandatory. The Government of Ghana's support for
marginalization of PWID and their exclusion from basic education is unequivocal. Article 39 of the
enjoying equal opportunities in all spheres of life. constitution mandates the major tenets of the free,
Superstition and the cultural belief system thus form a compulsory, universal basic education (FCUBE) initiative.
1
Agbenyega, 2003
2
Tv3 News: Ghana Statistical Service (GSS) release of 2010 provisional census results
1

15. Introduction
Launched in 1996, it is one of the most ambitious pre- PWID, there are often very limited vacancies and they are
tertiary education programs in West Africa. Since 1986, located far away from rural communities. Besides these
pre-tertiary education in Ghana includes 6 years of facts, special schools are often not known by most of the
primary education, 3 years at the junior high school level, Ghanaian population including traditional and religious
and 3 years at the senior high school level. Successful leaders. There are only few private schools for PWID and
completion of senior high school leads to admission the fees that parents have to pay for their children are
eligibility at training colleges, universities and other relatively high. Most children with ID in rural areas and
tertiary institutions. The workforce population is around often those in sub-urban areas do not receive any form of
11.1 million, out of which 47.9% are into Agriculture and education at all.
fishing; 16.2% into industry and transport; sales and
clerical--19.3%; services--5.9%; professional--8.9%; others- The healthcare system does not cater for the specific needs
-1.8%. of PWID and the number of specialists with knowledge in
this field is very limited and mainly concentrated in the
two biggest cities of Ghana, Accra and Kumasi. Although
1.2 The Disability Situation in Ghana disability policies are existing on paper, the
No accurate national survey has been carried out to implementation is very limited and awareness of the
determine the disability rate in the country. Although the Disability Law is low amongst society and the families of
2010 population and housing census in Ghana formally PWID. Most NGOs working with PWID face challenges in
involved questions about Persons with Disabilities, it was terms of lack of resources and qualified staff members,
experienced that these questions were often left out in the which limits their ability to meet their objectives.
interviews and data on the census therefore won't be
reliable. The World Health Organisation (WHO) however
estimates the disability rate of Ghana to be between 7 and
10 per cent, which equates approximately 1.70 – 2.4 million
people in the country. In most developing countries
including Ghana, disabled persons constitute an
impoverished marginalized group, characterized by lack
of access to public health, education, and other social
services that would ideally support and protect persons
with disabilities. Economically as well as in social terms,
disabled persons in developing countries are classified
among the poorest of the poor.
Persons With Disabilities (PWDs) in Ghana are often
regarded as unproductive and incapable of contributing in
a positive way to society, and rather seen as constituting an
economic burden on the family and the society at large,
which leaves them in a vicious cycle of poverty. In Ghana,
Persons with Disabilities are often only weakly
represented in civil society. It is estimated that Persons
with Intellectual Disability constitute the 3rd largest
category of Persons with Disabilities in Ghana (Ghana
National Disability Policy Document, 2000).
PWID face many forms of exclusion in the society. Despite
government policy of inclusive education, many children
with ID are still excluded from any form of education.
Although the government opened special schools for
2

16. 2 RESEARCH QUESTION AND OBJECTIVES
As the basis of the research the following research question was formulated:
What are the attitudes of people in the Greater Accra, Volta,
Upper East and Brong Ahafo regions in Ghana towards
PWID and their families and what can be done to increase
positive attitudes towards PWID and their families.
In order to answer the research question, five objectives were established:
 baseline information on the cultural and religious beliefs about PWID
To gather
and their families
insight into how negative attitudes towards PWID result in social
To gain
exclusion of them and their families
 baseline information about inclusion of PWID and their families from
To gather
the perspective of parents and that of independent representatives (priests,
professionals, traditional leaders etc.)
 baseline information about the level of implementation of the national
To gather
and international law and policies on the rights of PWID in Ghana
 which factors can contribute to forming positive attitudes towards
To examine
PWID and their families.
3

17. 3 DEFINITIONS AND LITERATURE
In this chapter we will give some definitions to some of the 3.1.1 Down Syndrome
main terms used in this report and also provide some Down Syndrome4 is a set of mental and physical
literature on them as a background for the research. symptoms that result from having an extra copy of
chromosome 21. It affects all races and economic levels
3.1 Intellectual Disability equally. Approximately 1 in 800 to 1 in 1,000 babies are
Intellectual Disability3 (ID) is characterized by significant born with the disorder. A child with Down Syndrome may
limitations both in intellectual functioning and in adaptive have eyes that slant upward and small ears that may fold
behaviour as expressed in conceptual, social and practical over a little at the top. The mouth may be small, making the
adaptive skills. PWID experience difficulties in one or tongue appear large. The nose also may be small, with a
more of the following areas: learning, communication, self flattened nasal bridge. Some babies with Down Syndrome
have short necks and small hands with short fingers. The
care, home living, social skills, community use, self
child with Down Syndrome is often short and has unusual
direction, health and safety, leisure, and work. An
looseness of the joints. Most children with Down
intellectual disability may become apparent early in life or, Syndrome will have some, but not all of these features. The
in the case of people with a mild intellectual disability, may degree of intellectual disability varies widely from mild to
not be diagnosed until school age or later. This disability moderate to severe. There is no cure yet for Down
originates before adulthood. An individual can be mildly Syndrome, nor can it be prevented. Scientists do not know
affected to profoundly affected. There are varying causes why problems involving chromosome 21 occur. Nothing
of intellectual disability. Head injuries, diseases, genetic either parent did, or did not do, caused Down syndrome.
conditions, birth defects and strokes are all possible causes
for intellectual disability. Genetic disorders cause down Children with Down Syndrome can usually do most things
syndrome or fragile X syndrome; and environmental that any young child can do, such as walking, talking,
factors, such as alcohol intake before birth, also can cause dressing and being toilet-trained. However, they generally
Fetal Alcohol Syndrome (FAS). Intellectual disability do these things later than other children. About 30 to 50
caused by certain infectious diseases (such as rubella) and percent of persons with Down Syndrome also have
metabolic disorders (such as Phenylketonuria, or PKU) congenital heart defects, and many have some visual and
have decreased as the result of widespread use of hearing impairment and other health problems with the
childhood vaccines and increased newborn screening. intestines, eyes, thyroid and skeleton. The severity of all of
these problems varies greatly. Down Syndrome is not a
Depending on the severity of the problem, a patient can condition that can be cured. However, early intervention
live a fairly normal life or a totally incapacitated life. It is can help many people with Down syndrome live
important for the level of severity to be properly diagnosed productive lives well into adulthood. Like all children,
for the individual to be helped accordingly. Affected children with Down Syndrome greatly benefit from being
children sit, crawl, stand, walk, and run later than their age able to learn and explore in a safe and supportive
mates. They learn to talk much slower than others. They environment. Being included in family, community, and
have difficulty speaking once they learn how to speak, for preschool life will help a child with Down Syndrome
instance they may mumble a lot or stammer. These develop to his or her full potential.
individuals have difficulty with their memory as well as
solving problems, and they do not easily recognize the 3.1.2 Autism
5
results of their actions. Some children with ID go to regular It is a pervasive disorder of development characterized by
schools and may attend regular classes but many need three distinctive behaviours. Autistic children have
special attention to help them in areas where they have difficulties with social interaction, display problems with
more trouble learning. Ideally, their parents work with verbal and nonverbal communication, and exhibit
teachers and others to come up with individualised repetitive behaviours or narrow, obsessive interests. These
education plan (IEP) for the best way for each child to behaviors can range in impact from mild to disabling.
learn. The best known ID are Down Syndrome and Autism varies widely in its severity and symptoms and
Autism.
3
ILO Website: http://www.ilo.org/global/about-the-ilo/press-and-media-centre/news/WCMS_123796/lang--es/index.htm
4
Health Encyclopedia – Diseases and Conditions
http://www.healthscout.com/ency/68/449/main.html
5
NIH: National Institute of Child Health and Human Development
4

18. Definitions and Literature
may go unrecognized, especially in mildly affected Stigma attached to PWID and their families is harmful,
children or when more debilitating handicaps mask it. both in itself, since it can lead to feelings of shame, guilt and
While not specific or universal to the disorder, 50-75% of isolation, and also because negative thoughts often lead
individuals with autism exhibit lower than average individuals to do things, or omit to do things, that harm
intellectual abilities (APA, 2000, Pellicano, 2007). With no others or deny them services or entitlements.
known cure to date, the relationship between autism and
developmental indicators (such as poverty) continues to be
a knowledge gap. Autism typically affects the most 3.2.2 Discrimination and Exclusion
fundamental aspects of quality of life, such as the ability to Discrimination occurs when a distinction is made against a
understand what others feel and think, the ability to person that results in his or her being treated unfairly and
communicate your basic needs or socialise with those unjustly on the basis of their belonging, or being perceived
around you and the necessary understanding to process to belong, to a particular group. Discrimination does not
and make sense of emotions6. only exist on personal or individual level, but also involves
institutional discrimination where governmental bodies
do not include the needs of certain disadvantaged groups
in their policies and services. Because of the stigma
3.2 Stigma, Discrimination and Exclusion
associated with intellectual disability, and the
Intellectual disability-related stigma often leads to
discrimination that may follow from this, the rights of
discrimination of PWID and their families. This, in turn,
PWID and their families in Ghana are frequently violated.
leads to the exclusion of PWID and their families or other
This violation of rights increases the negative impact on
associates. Stigma, discrimination and exclusion create,
these individuals and their families. Schools, for example,
reinforce and legitimize each other. They form a vicious
may deny PWID education. Or employers may not accept a
circle.
person for employment on the grounds of the potential
employee having intellectual disability. Families and
communities may reject and ostracize PWID. Such acts
3.2.1 Stigma
constitute discrimination and violate human rights. At the
Stigma has been described as a quality that significantly
level of the individual, for example, it causes undue
discredits an individual in the eyes of others7. It has its
anxiety and distress-factors that are known to deepen their
origins deep within the structure of society as a whole, and
ill-health. At the level of the family and community, it
in the norms and values that govern much of everyday life.
causes people to feel ashamed, to conceal their links with
For example, in Ghana, parents of children with
PWID, and to withdraw from participation in more
intellectual disability are often believed to have deserved
positive social responses. And at the level of society as a
what has happened by doing something wrong. Often
whole, discrimination against PWID reinforces the
these wrongdoings are linked to either “juju”, witchcraft,
mistaken belief that persons born with intellectual
drug abuse, alcohol intake or its abuse by the mothers of
disability are unacceptable and that they should be
such children.
ostracized and blamed.
Self-Stigmatization, or the shame that PWID as well as
The family and community often perpetuate stigma and
their families experience when they internalize the
discrimination, partly through fear and ignorance, and
negative responses and reactions of others, is also evident.
partly because it is convenient to blame those who have
Self-stigmatization can lead to depression, withdrawal
been affected first.
and feelings of worthlessness. It silences and saps the
strength of already-weakened individuals and
communities, and causes people to blame themselves for
their predicament.
6
Iovannone et al., 2003, Jordan, 1997, 2005
7
UNAIDS Report - August 2001
5

19. 4 METHODOLOGY
4.1 Research Sites
The study was carried out in four regions namely: Brong Gurma (6.5%). The people of the region originally
Ahafo Region, Upper East Region, Volta Region and the practised the Traditional religion. However, over a century
Greater Accra Region and half ago, with the arrival of Christian missionaries in
the region, many have converted to Christianity. Of a total
population of around 1,635,421, 67.2% are Christians;
4.1.1 Brong Ahafo Region 21.8% practise Traditional Religion and 5.1% are Muslims.
With a territorial size of 39,557 square kilometers, it is the
second largest region in the country (16.6%). The region is
the fourth most urbanized region in Ghana. Christianity 4.1.4 Greater Accra Region
(70.8%) has the largest following, while Islam (16.1%) and The region shares boundaries with the Eastern region in
no religion (7.8%) are the significant others. Large the South Eastern, Volta region in the South West and the
followers of Christianity are in all districts. Islam is Central region in the South. It has Accra as the capital with
practised mainly in Kintampo (29.7%) and Atebubu 10 Metropolitan, Municipal and District assemblies.
(24.4%), where Muslims outnumber the two most Analysis of the region shows that Greater Accra has
professed Christian denominations, Catholics (21.4%) and remained the most densely populated region in the
Pentecostals (17.6%). Traditional religion is most practised country since 1960. The largest ethnic group in the region is
in Sene (18.8%), followed by Atebubu (15.7%) and the Akan, comprising 39.8 percent, followed by Ga-
Kintampo (10.0%). More than half (57.6%) of the Dangme (29.7%) and Ewe (18%). The percentage
population aged 15 years and older in the region are in distribution of religious groups shows the predominance
marital union. Nearly a third has also never married. The of Christians (82.9%) in the region, compared with the
proportion of the population not literate in the region is second major religion, Islam (10.2%). Twenty eight per cent
48.5% of males are household heads compared to 12.7 per cent of
females. Where a female is the head of household, it is very
4.1.2 Upper East Region likely that it is a single person household or a single parent
It is bordered to the north by Burkina Faso, the east by the household. In spite of the minimum legal age of 18 years
Republic of Togo, the west by Sissala in Upper West and prescribed for marriage, there is an indication that
the south by West Mamprusi in Northern Region. The total marriage takes place among persons aged 12-17 years.
land area is about 8,842 sq km, which translates into 2.7% of
the total land area of the country. Bolgatanga is the capital
of the 10 districts. Three main religious groupings are 4.2 Sample Size
found in the region, namely the Traditional (46.4%), The study involved parents/care takers of PWIDs,
Christianity (28.3%) and Islam (22.6%). Within the independent leaders and specialists in the field of
Christian religion, the Catholics are in the majority. The Intellectual Disabilities. A total number of 69
gap in the educational attainment between the country and leaders/specialists and 53 parents were interviewed in the
the region is still very wide. The lack of education in the four regions in Ghana.
region is not due only to general poverty and cultural
practices but also to the very late introduction of education
into the region.
4.1.3 Volta Region
The region shares boundaries with Togo in the South
Western along the coast, Northern region in the North
Eastern corridors and Eastern region in the Southern
eastern corridors. About four-fifth (78.7%) of the stock of
houses are in the rural areas. Eight major ethnic groups are
represented in the region and about 62 sub-groups speak
56 dialects. The main ethnic group is the Ewe (68.5%),
followed by the Guan (9.2%), the Akan (8.5%) and the
6

20. Methodology
Sample size of the research per region
Parents
Leaders/Specialist
Upper East Brong Ahafo Volta Greater Accra
Figure 1: Distribution of interviewees per region
4.2.1 Independent Leaders and Specialists
The sample group of independent leaders and specialist consisted of the following group8.
Type No. of Persons
Consultants 3
Ghana Education Service 12
Government Officials 5
Health Officials 2
NGO Leaders 13
Religious Leaders 5
Social Workers 2
Special Educators 22
Traditional Leaders 5
Total 69
8 See Annex 3 for a list of the individuals of this sampled group
7

21. Methodology
4.2.2 Parents/Caretakers of PWID 
3 group discussions with independent leaders
The parents or care takers that were interviewed for the 
50 semi-structured interviews with parents/care
study were mostly related to the member organisations of takers of Persons with Intellectual Disability
Inclusion Ghana. This surely had an effect on the level of 
3 group discussions with parents of children with
knowledge on intellectual disability and its causes. intellectual disability
However, it was often felt that parents did not share all 
Non-participant observation
experiences and were trying to give a more positive picture
of the situation than actually is the case. Because of the On average it took one (1) hour to finish an interview. For
stigma in Ghana, we were not able to interview parents the parents' interviews, locations were selected where the
that actually hide their children from society and therefore privacy of the participant could be guaranteed as much as
cannot incorporate their level of knowledge in the study. possible. The findings of this report are subjected to some
The parents whom we identified as those who hide their limitations following from the research methods used. The
children were not willing to collaborate in the study. research sample was taken from four regions in Ghana and
is therefore not representative for the whole population of
Ghana. Due to the locations of the interviewees especially
4.3 Research Design the parents of PWID and to financial and practical
In order to explore the research question and objectives, constraints it was not possible to visit every district in each
the researchers used a combination of quantitative and region. We chose to select at least two districts per region so
qualitative data collection methods to come to a reliable we can reach out to more parents. At the end of the research
report. The following methods of data-gathering were we interviewed people in a total of 11 districts. Researchers
used: have found that due to a social desirability bias, the
reliability of the answers of the respondents was
 secondary data
Analysis of sometimes influenced. Therefore, the results of this

66 semi-structured interviews with Independent research cannot be generalized.
Leaders / Specialists from government
institutions, special schools, churches, etc
8

22. KEY FINDINGS:
5 A grim picture with glimmers of hope
5.1 Profile of Parent Respondents and their Children
Which of the impairments is your
child diagnosed of
Down Syndrome
Autism
None
Other
Figure 2: Disabilities of Children
40% of the parents who were interviewed had no formal diagnosis of the disability of their child, whereas
32% of the parents have a child that is diagnosed with autism and 17% has a child with Down syndrome. 6%
of the parents mentioned epilepsy as the disability of their child. All parents in the Greater Accra and Volta
region that were interviewed, were identified via the special (private) schools and the Korle Bu hospital and
all had a formal diagnoses of the disability of their child, whereas 50% of the children in Upper East Region
and none of the children in Brong Ahafo region were diagnosed by a hospital or an assessment centre.
How old was your child when you
first suspected the impairment?
Younger than 2
2-4 years
5-7 years
8-10 years
Figure 3: Age of children at diagnoses
The sample group was asked when they first suspected an irregularity in their child's development and
what the first symptoms were that made them think something was not as it should be. The number of
parents that noticed something was amiss at a young age of their child was significant, where not trying to
speak or not responding to efforts of contact were mentioned most frequently as the first symptoms. 85% of
the parents consulted a doctor whereas 5% said to have first addressed their concern to a spiritual leader.
9

23. Key Findings: A Grim Picture With Glimmers of Hope
76% of the sample group 'parents and care takers' were biological parents of children with intellectual disabilities, who
were living with their own children whereas other care takers were members of the immediate family. It is important to
say that in Ghana, it is not unusual that children grow up with the extended family instead of the parents. Logistics (being
close to a school or available transport), financial constraints are amongst other reasons for families to decide so.
Marital status of parents/care takers
Single / Never been
married
Married
Separated /Divorced
Widowed
Figure 4: Marital Status of Parents
67% of the parents who replied to the question what their children are identified with autism or down syndrome
marital status is were married or remarried, whereas 21% could only mention or describe that specific type of
of the parents were divorced. This does not scientifically disability as what their children have, 28% of the parents
prove the assumption that a lot of fathers leave the mothers could also mention another type of ID. It needs to be
when they find out about the disability of their child. mentioned that the independent leaders/specialists that
However, it was observed and estimated by specialists that were interviewed were mainly people that were in some
as many fathers leave the mothers when they find out their way familiar with intellectual disability already. They
child is intellectually disabled, same number of mothers were mostly introduced to us by our member
also leave the fathers noticing their child has an intellectual organisations, who have done some good work in ID
disability. Independent leaders and specialists also education/awareness raising. Therefore it is assumed that
mentioned that, also because of the stigma, a lot of parents the sample taken in this research is not representative for
fear to share the experience of their broken marriage and the level of knowledge all over Ghana.
prefer mentioning that they are still married although they
live separately from their husband or wife. Unfortunately a similar interview with a sample of the
Ghanaian population in general was out of scope of this
5.2 Awareness of Intellectual Disability Issues study.
95% of the independent leaders/specialists said they were
familiar with the term intellectual disability whereas 60% 5.2.1 Causes of Intellectual Disability
of the parents know the term. Most descriptions that were Three of the parents explained their thoughts about the
given as an answer to the question to describe intellectual causes of intellectual disabilities with the following stories:
disabilities were pointers in the direction of people that are
unable to speak, talk, reason or move like their peers or “My wife left me for another man during her
show a slower development than is usual. Autism (42.5%) pregnancy. She was punished by the gods
and Down Syndrome (45%) were mentioned most as by giving birth to my autistic son.
intellectual disabilities people know. Epilepsy and She brought me the son and left.”
hyperactivity were also mentioned. Most parents whose
10

24. Key Findings: A Grim Picture With Glimmers of Hope
“My pregnancy lasted 11 months. Therefore my daughter has this problem.”
“People who hate you or are jealous of you can “juju” you. They can consult a
shrine to see if something good can happen to you in the future for you and your
children and when they get to know it, they can cause for example a disability on
your child. Thus what happened to our child.”
Respondents were asked if they think diseases, accidents, curses/juju and medical errors can cause disability. The graph
below shows most of the respondents (66) consider medical reasons and diseases as one of the causes of disability
whereas 19 leaders and 6 parents also mentioned accidents as a cause.
In the interviews respondents said that mistakes made by doctors or nurses sometimes result in the disability. There
seems to be distrust in some doctors and nurses in Ghana. Some of the respondents explained how their children's
disability was caused by such a medical error. As one respondent explained:
“The nurse in the hospital delayed to attend to me in the second stage of my labour.
I was really suffering then and later I had to go through a cesarean section before
my daughter was born. Thus why she has a brain damage.”
Some respondents also explained why they think the disability was caused by a spiritual reason. They explained that
some of these children with ID were never ill and all of a sudden they started experiencing the condition and there was no
other reason found so it could not be anything else but something spiritual that caused the disorder.
What do you believe is the cause of ID
Leaders
Parents
Medical
reasons / Accident
Spiritual cause
diseases / juju Medical error
Other
Figure 5: Causes of ID
Most respondents mention medical reasons as (one of) the Only one of the respondents believes that PWID are
cause(s) of intellectual disability. Amongst the 'other' responsible themselves for their impairment and
answers people mainly mentioned that improper care explained this as the fact that they have taken too much
during pregnancy, drinking alcohol and abusing drugs drugs. 11% of the parents feel they have a responsibility for
during pregnancy were causes of intellectual disability. their child's impairment.
Convulsion and failed abortion were mentioned in some
cases as well. Spiritual causes were frequently mentioned 5.2.2 Treatment or Cure of Intellectual Disability
although most respondents refer to the fact that other
people think spiritual forces are causing intellectual “God works in a mysterious way. We have been
disability and said they did not believe that themselves praying and my son gets better slowly. In the end he will
(anymore). In Brong Ahafo region, some independent be cured”, a parent explained when asked about
leaders mentioned that if parents of this group of children whether intellectual disability can be cured.
have money, people believe that income was being
generated by using their children for offering ceremonies
or other spiritual rites (juju).
11

25. Key Findings: A Grim Picture With Glimmers of Hope
Figure 6 below shows the responses of both parents and independent leaders on this subject. Amongst the parents
interviewed 69% believes that intellectual disability can be cured whereas 44% of the independent leaders believe same.
God is mentioned as the source of cure in a lot of cases and also operations in western countries are believed to be the
solution for the problem of PWID. Amongst the independent leaders 54% say that intellectual disabilities can only be
managed. Parents indicate that when they first found out their children had the disability, they tried to find all possible
ways to cure the disabilities but sooner or later realized they should accept it is not curable. Some parents mentioned that
they went to all kinds of spiritual / miracle churches, prayer camps and some to traditional priests for possible cure of their
children. All of these parents admitted however that their children were not healed after all the spiritual healing they
sought after.
Do you think intellectual disabilities can be cured
Leaders
Parents
Yes
No
Don’t know
Figure 6: Treatment or Cure of ID
5.3 Inclusion of Persons with Intellectual The concept of Inclusive Education (IE) directly and
indirectly has been embedded in several Government
Disability in Ghanaian Society
policies since independence. The aspiration for inclusive
In the perspective of this study inclusion was defined as all
education dates back to 1951 when Dr. Kwame Nkrumah,
components that influence the integration of PWID in the
in the Education Reform under the Accelerated
Ghanaian society. To measure the level of inclusion of
Development Plan, introduced fee-free compulsory basic
PWID, questions about their inclusive education/special
education for all children aged five and below sixteen. It
education, employment, health care system, attendance in
sought to expand access to education to all; narrowing the
church or mosque and social events were asked.
gap between, the north and the south, as well as urban and
rural areas. The policy was enacted into law under the
Education Act of 1961 (Act 87) 9
5.3.1 Inclusive Education / Special Education
Ghana considers a quality human resource base as very After independence, successive governments have
crucial in its development efforts to ensure socio-economic consistently pursued educational policies aimed at
well being of its citizens, and education plays an important expanding access for disadvantaged groups and limiting
role in this regard. Taking this direction, various policies exclusion from quality education. Ghana has ratified
have been initiated to enable citizens, especially children several international conventions on the right to education
irrespective of their socio-economic background, to have including the United Nations Declaration of Human
access to formal education to develop their potential and Rights, UN Convention on Rights of Children, UNESCO
have equal opportunities to contribute to the development statement on principles and practices of Special Needs
of the country. This is based on the fact that the potential of Education, the Education for All (EFA) goals and
children should be fully developed to contribute their Millennium Development Goals. These have been
quota towards the country's development efforts. incorporated into national laws.
9
Achanso, S.A ( 2010). The impact of economic recovery programme on basic education in Ghana. University of Lincoln
Thompson, N.M and Casely-Hayford, L. (2008). The financing and outcomes to education in Ghana. RECOUP Working Paper 16. RECOUP, Cambridge
12

26. Key Findings: A Grim Picture With Glimmers of Hope
The main legislative instruments which have promoted the Therefore it is estimated that 90 to 95% of the teachers have
adoption of Inclusive Education policies in the last 20 years not had any form of education on the special needs for this
in Ghana includes: group12. In 2005 SPED developed a new curriculum for
school that educates Children with Intellectual Disability
Article 25(a) of the 199210 constitution states: “All
 (CWID). The new curriculum involves 6 years of basic
persons shall have the right to equal education, 4 years of pre vocational preparation and 2
educational opportunities and facilities and with the years of attachment with service providers. However, this
is still only a pilot project that has been implemented in 2
view to achieving the full realization of this right, basic
specials schools in Ghana and the Special Education
education shall be free, compulsory and available
Division points out that funding of this new policy is a
to all. major challenge. Until the end of 2010 the attention given to
this group of children with special needs in the

The Children's Act (560) of 1998 also enjoins
government was low. The former Minister of Education
government to promote the physical,
promised however to allocate more resources to this area.
mental and social well-being of every child.
The latest available statistics (2011) shows that SPED runs

The Disability Law (Act 715) of 2006 provides for the
13 special schools13 for children with intellectual disability,
establishment of Special Educational schools for
children with severe special needs education. Parents which focus their education on training in social behaviour
and guardians/care givers are to enroll them in schools and activities for daily living skills. In addition, there exist
depending on their level of disability however there 24 units14 for special needs children with intellectual
should be no barrier to their admission. disability (Integrated schools). There is however no central
records for private schools in Ghana but New Horizon

The Education Act (778) of 2007 "Provide for inclusive School, Autism Awareness Care and Training Centre and
education at all district levels" (Article 5). It also makes Multikids Academy have been identified as some of the
two years kindergarten part of basic education, private schools supporting the education of CWID.
extending basic education to 11 years.
According to data provided by the Special Education
The Ministry of Education (MOE) has a Special Education Division of the Ghana Education Service (GES) in 2011,
Division (SPED), whose objective is to increase access to approximately 1860 children with intellectual disability
quality education and to train the youth and children with attended education provided by the government. There is
special educational needs, leading to employable skills for no reliable data that could be retrieved on the total number
an economic and independent living. The Education of children with intellectual disabilities that get any form of
Strategic Plan (2010-2020) claims that all children with non- education from private schools. Besides, the number of
severe special education needs will be incorporated into children on the waiting lists of the special schools or special
mainstream schools by 2015.11 Despite the policy of units is high. The SPED has the ambition to open 20 new
inclusive education, there are still a large number of units for CWID per year but foresee the budget that will be
children and youth with intellectual disability who are are allocated for that will not be sufficient.
not helped from undertaking basic education in regular
schools. Also, others with very mild intellectual disability All respondents to the questionnaire see the value of
do not complete basic education due to hostile teaching education for CWID. None of the respondents mentioned
practices adopted by some of the teachers. that no education for them is needed. The opinions about
whether CWID should go to regular schools or special
It is estimated that only up to one percent of PWID have schools were divided. 44% of the leaders thought CWID
access to education in Ghana. It is only in 2007 that the should go to special schools or institutions whereas 64% of
subject of special needs was incorporated in the subjects the parents had the same opinion.
taught at the several teacher training institutions.
10
The Republic of Ghana (1992). The Constitution of the Republic of Ghana. Ghana Publishing Company, Accra
11
GFD, 2008
12
Interview with SPED
13
See annex 4 for List of Special Schools for Children with Intellectual Disability
14
See annex 4 for List of Units for Special Needs (Integrated Schools)
13

27. Key Findings: A Grim Picture With Glimmers of Hope
How do you think PWID should be educated
Leaders
Parents
Regular school
Special school
No education
needed
Figure 7: Education of PWID
Some stories parents narrated as their frustration of getting school admission for their wards are as follows:
“The teacher in the regular school called to tell me it was useless bringing my
child to school. He would never learn anything”.
“I sent my daughter to school when she was 5 but the teacher didn't want to
teach her. I tried again when she was 12 and now the teachers say she is too
old to learn”
In general people mentioned it was difficult or very difficult to get good education for PWID in Ghana. Parents that were
interviewed whose children were not in school mentioned they don't know about any good school for their children. They
had tried but the teacher from the regular school did not see the use of education for their child or the special unit or school
was too far from the house. An observation done during the research was also that most respondents apart from
specialists in special education were not aware of special schools available in their town, district or region and can
therefore not be able to refer people who consult them regarding the education of PWID. This was also a remark often
made by leaders as a reason for saying finding good education in Ghana is difficult.
How difficult is it to get good
education for CWID in Ghana
Very difficult
Difficult
Somewhat difficult
Not difficult
Figure 8: Difficulty of getting good education for PWIDs
14

28. Key Findings: A Grim Picture With Glimmers of Hope
Teachers also believe that amongst the group of people During the interviews we were often told that the doctor
with low income, the interest in education is very low. said he could not do anything about it, or the child would
“They will miss income if they send their child to school or need to grow out of the problems. Parents often responded to this
spend money on transport to school. This counts for children diagnoses by waiting and praying. Most doctors in Ghana,
without disabilities, let alone those with intellectual disability. If especially those in rural areas, only seem to have very basic
you have 5 children and only a few Ghana Cedis to spend a day, knowledge about intellectual disability. For them the
which child will you not allow to go to school to save cost?” diagnoses 'low IQ' is the only thing they will say the child is
experiencing. Parents often do not have the means to visit a
specialist in Kumasi or Accra and therefore just accept
5.3.2 The Health Care System what their local doctor tells them 15
One of the main components for securing good health is the
provision of quality health services. The Ghana Health Two parents narrated what some doctors told them when
Services under the auspices of the Ministry of Health they took their children to the hospital for diagnosis:
(MOH) identifies priority intervention areas for improving
the health of children.
“You wouldn't believe me if I told you that my doctor
In line with the Ghana Poverty Reduction Strategy (GPRS) said that I was the cause of my son's disability. I must
and to address the problem of financial barriers to health have drunk too much alcohol or used drugs”
care access, the Government in 2001 initiated a National
Health Insurance Scheme (NHIS) to deliver accessible, “My son could still not speak when he was 5. When I
affordable and good quality health care to all Ghanaians saw my doctor he said I just needed to be patient. So I
especially the poor and most vulnerable in society. The went home”
National Health Insurance Law – Act 650 came into effect
in October 2003. Under the National Health Insurance Besides the fact that most doctors in Ghana seem to have
Scheme, health care for Persons with Disabilities should be only a basic knowledge about ID and so are not much
free but in rural communities most families are not helpful, there are only a few specialists in Ghana who have
registered under the scheme. This affects PWID because of experience in supporting families with PWID. Ghana has
the higher frequency of illnesses they suffer. A top official for example 6 speech and language therapists of whom 1 is
at the National Health Insurance Scheme explained to one retired and is based in Kumasi, all others have their work
of our researchers that even staffs working with the scheme places in Accra. The clientele therefore is mainly (around
are not often aware of this arrangement. The Disability Act 75%) from the Greater Accra Region whereas a few come
2006 contains provisions that provide for children with from other regions in the country. Only parents who have
severe disabilities thus access to free healthcare, but the real dedication to help their child, and in most cases are
person has to be able to go to a health clinic and needs to well educated or have travelled abroad know about the
know about the contents of this law and ask for added value of speech therapists and seek for their
arrangements. The knowledge of these rules is low. services. Doctors in general also do not know about the
support the therapists can give children with intellectual
Due to lack of knowledge on ID issues, most families or disability. The therapists get some referrals from doctors in
relatives take their CWID to mental hospitals for diagnosis Accra but the number of doctors who know about
and treatment. Even though the mental hospitals do offer therapists places and services can be counted on one hand.
some help there is lack of specialism in ID. More often than The therapists also have waiting lists for therapy services
not, wrong interventions are given. Also at the mental and suffer from a lack of funding to do all the work they
hospitals, mishandling by unqualified support staff, want to do.16
torture, physical, sexual, psychological and verbal abuse
are the order of the day. Isolation of such persons from There are also specialist doctors that can be counted on one
society makes them completely invisible and forgotten by hand, mainly operate in the teaching hospitals in the big
all including policy makers. cities and are hard to access for people in rural areas in the
country. There is no data available on how many patients
are diagnosed with intellectual disability per year. After
15
Interview with a Doctor at the Korle Bu Teaching Hospital
16
Interview with Nana Akua Owusu, a Speech and Language Therapist Korle Bu Teaching Hospital
15

29. Key Findings: A Grim Picture With Glimmers of Hope
diagnoses the path way for the parents are usually confused. There is no list of special schools or institutes in Ghana
available and the only thing doctors can do is refer families to institutes or schools they happen to know. This means that,
if people in rural areas are able to visit the specialists in the main cities in Ghana, they will not be referred to schools or
institutions in their areas, if these are in place. Specialists see there is a major gap in the Health Services for PWID. There is
no funding for research, not enough specialists that are able to diagnose, no interventions, support or services for families
of persons with ID. 17
Figure 9 shows responses given on the question how difficult it is to find good health care for PWID in Ghana. It seems that
a lot of the parents accept what doctors tell them in that nothing can be done about the situation of their children. Leaders
and specialists in Ghana are, however, less optimistic. 30% of them believe it is very difficult to find good health care for
PWID in the country and 38% say it is difficult.
How difficult is it to get
good health care for PWID
Leaders
Parents
Very Difficult
difficult Somewhat
Not
difficult Don’t
difficult
know
Figure 9: Difficulty of getting good health care support for PWID
5.3.3 Assessment of Persons With Intellectual
In 2010, NARC assessed 96 children with intellectual
Disability
disability (59 boys and 37 girls) and in the first quarter of
2011, the number of assessments done was 31 (22 boys, 9
The National Assessment and Resource Centre (NARC) for
girls). The number of yearly assessments is increasing. Staff
Children with Disabilities, based in Accra was established
feels that people in Ghana are getting to know the
in 1975 to augment the efforts of the Ministry of Education.
assessment centre better and seem to start seeing the value
The NARC has regional branches and its mission is to
of education for PWID.
enhance the educational opportunities of children with
disabilities and special educational needs, through the
NARC deals with a difficult situation and often does not
provision of avenues for early identification and detection,
have the right equipments to assess the different
for the promotion of appropriate medical interventions
disabilities of the children. The NARC is formally the only
and educational and vocational placements. NARC in
centre for assessment of CWID which means parents from
Accra has a work relationship with the psychiatric hospital
other regions with little money would find it hard or nearly
in Accra. After a first assessment at the centre where an
impossible to access the Centre. The deplorable state of
intellectual disability is suspected, children are referred to
their building may be another sign of how seriously the
the hospital for further assessment. Based on the outcome
care for children with special needs is being taken by the
of that assessment, NARC advises parents where to take
Ghanaian Government.
their child to school.
17
Interview with a Doctor at the Korle Bu Teaching Hospital
16

30. Key Findings: A Grim Picture With Glimmers of Hope
A parent narrated, “After a lot of effort, the first thing my husband did to support
me in my quest about my son's disability was going to the National Assessment
and Resource Centre. He was back in the house soon. The state of the NARC was
another confirmation for him that people don't take children like that seriously”
Figure 10: The side view of the NARC
Figure 11: The back view of the NARC
17