Report On The Level of Stigmatisation, Discrimination and Exclusion of Persons With Intellectual Disability and Their Families in Ghana

REPORT
ON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL DISABILITY AND THEIR FAMILIES IN GHANA
JULY 2011
REPORT
ON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL DISABILITY AND THEIR FAMILIES IN GHANA
JULY 2011
PROFILE
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
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FOREWORD
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
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ACKNOWLEDGEMENTS
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
ACRONYMS
CDC CDD CWID DANIDA ESP EFA FAS FCUBE GDP GES GFD GHS GoG GPRS GSS ID IE IEP MOE MOH NARC NCPD NGO NHIS OPWD PWD PWID SEN SPED UN UNESCO VSO WHO
Center for Disease Control and Prevention Centre for Democratic Development Children With Intellectual Disability Danish International Development Agency Education Strategic Plan Education for All Agenda Fetal Alcohol Syndrome Free Compulsory Universal Basic Education Gross Domestic Product Ghana Education Service Ghana Federation of the Disabled Ghana Health Service Government of Ghana Ghana Poverty Reduction Strategy Ghana Statistical Service Intellectual Disability Inclusive Education Individualised Education Plan Ministry of Education Ministry of Health National Assessment and Resource Centre National Council on Persons with Disability Non-Governmental Organization National Health Insurance Scheme Organisations of Persons With Disability Persons With Disability Persons With Intellectual Disability Special Educational Needs Special Education Division of the Ghana Education Service United Nations United Nations Educational, Scientific and Cultural Organization Voluntary Services Overseas World Health Organisation
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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
INTRODUCTION ............................................................................................................................................ 1
1.1 1.2
2 3
Profile of Ghana..........................................................................................................................1 The Disability Situation in Ghana............................................................................................2
RESEARCH QUESTION AND OBJECTIVES ............................................................................................ 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
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5.3.5 Marriage and Family Life ................................................................................................... 5.3.6 Social Life & Participation in the Family and Community................................................ 5.3.7 Participation in Church and Mosque activities .................................................................. 5.4 Discrimination and Stigmatisation of PWIDs in Ghana..................................................... 5.5 Existence and Implementation of Disability Policies & Strategies targeted at PWIDs ..
6 CHANGING ATTITUDES ...........................................................................................................................
19 21 21 22 23
26
6.1 6.2 6.3 6.4 6.5

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26 27 28 28 29 CONCLUSION ............................................................................................................................................... 30
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The Role of Government ......................................................................................................... The Role of the Media.............................................................................................................. The Role of Parents .................................................................................................................. The Role of PWID themselves ................................................................................................ The Role of NGOs ....................................................................................................................
RECOMMENDATIONS: Opening New Doors to PWID and their Families ...................................
8.1 8.2 8.3 8.4
Meeting the Needs of Parents and Families of PWID ........................................................ Implementation and Improvement on Government Policies ............................................ Media Intervention .................................................................................................................. The Community is key ............................................................................................................
31 31 32 32
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9 FURTHER RESEARCH ................................................................................................................................. REFERENCES ..........................................................................................................................................................
LIST OF FIGURES Figure 1: Distribution of interviewees per region........................................................................................... Figure 2: Disabilities of Children .... Figure 3: Age of children at diagnoses.... Figure 4: Marital Status of Parents.. Figure 5: Causes of ID . Figure 6: Treatment or Cure of ID... Figure 7: Education of PWID .. Figure 8: Difficulty of getting good education for PWID ... Figure 9: Difficulty of getting good health care support for PWID.... Figure 10: The side view of the NARC... Figure 11: The back view of the NARC.. Figure 12: Difficulty of getting employment for PWID .. Figure 13: Parents perception of discrimination in employment............................................................... Figure 14: Difficulty of getting marriage for PWID .... Figure 15: Perception on whether PWID should be able to get married. Figure 16: Difficulty of participation in Church or Mosque.... Figure 17: Perception of discrimination against PWID in Ghana ........ Figure 18: Level of awareness of any legislation for PWID ... Figure 19: Improve Inclusion by Government... Figure 20: Improve Inclusion by Media...... Figure 21: Improve Inclusion by Parents.... Figure 22: Improve Inclusion by PWID themselves.... Figure 23: Improve Inclusion by NGOs..
7 9 9 10 11 12 14 14 16 17 17 18 19 20 20 22 23 24 26 27 28 29 29
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LIST OF ANNEXES Annex 1: Questionnaire - Parents/Caretakers36-42 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
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EXECUTIVE SUMMARY
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, nongovernmental 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.
INTRODUCTION
Inclusion 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. One may ask is the mission statement of Inclusion Ghana relevant to the Ghanaian society? Yes in Ghana, as elsewhere in Africa, traditional beliefs, culture, and social status have interacted and influenced people's perception and attitude towards Persons with Intellectual Disability (PWID). Intellectual Disability is often perceived as a curse or punishment for sins committed by parents of the PWIDs. In the Ghanaian society, pregnancy and birth are highly regarded as a blessing and are characterized with high expectations. There is no good reason a family can give to explain why a child is born with an intellectual disability except that the anger of the gods has been visited on them. 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). Two tribal groups, the Ewes and the Gas, refer to them as Asotowo (idiot or fool) and Buluus (reduced mental abilities) respectively. The Akans label persons with intellectual disabilities as Nea wanyin agya n'adwene ho which means 'feeble minded', which are perceived as offensive and dehumanizing labels, equated with insults. 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 disability who are given back to the water1. 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. Superstition and the cultural belief system thus form a
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continuous obstacle to the inclusion of PWID in the society, because within such a belief system it is difficult for any interaction to occur between the abled people and PWID. In many cases, PWID living on the street have been rejected by their own families. 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. This report describes the outcome of the study conducted by Inclusion Ghana. We give an overview of actual data that was measured, outcomes of observations we did and make recommendations to address particular areas of concern. We are hopeful that this report will contribute to further advocacy for the rights and needs of persons with intellectual disability and their families in Ghana and hope nobody will hesitate to use the information for any activity in this area. 1.1 Profile of Ghana The Republic of Ghana is located on the Southern Coast of West Africa. The GDP per capita of Ghana is US $ 1100 (World Bank, 2011), and 40% of the adult population lives on less than US $2 per day. Ghana was the first black African nation in the region to achieve independence from a colonial power, in this instance Britain. Ghana has a current total population of 24, 223,4312 of which more than 37 % are under the age of 14 with a life expectancy of 57 years and a child mortality of 18/1000 (< 5 years). Ghana's population is concentrated along the coast and in the principal cities of Accra and Kumasi. Ethnically, Ghana is divided into small groups speaking more than 50 languages and dialects. Among the more important linguistic groups are the Akans, which include the Fantis along the coast and the Ashantis in the forest region north of the coast; the Guans, on the plains of the Volta River; the Ga- and Ewe-speaking peoples of the south and southeast; and the Moshie-Dagomba speaking tribes of the northern and upper regions. The official language is English, however many of the poorest people are illiterate and therefore do not understand or use English, the official language. The different linguistic groups often have their specific beliefs and superstitions. Primary and junior high school education is tuition-free and mandatory. The Government of Ghana's support for basic education is unequivocal. Article 39 of the constitution mandates the major tenets of the free, compulsory, universal basic education (FCUBE) initiative.
Agbenyega, 2003 Tv3 News: Ghana Statistical Service (GSS) release of 2010 provisional census results
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Introduction
Launched in 1996, it is one of the most ambitious pretertiary education programs in West Africa. Since 1986, pre-tertiary education in Ghana includes 6 years of primary education, 3 years at the junior high school level, and 3 years at the senior high school level. Successful completion of senior high school leads to admission eligibility at training colleges, universities and other tertiary institutions. The workforce population is around 11.1 million, out of which 47.9% are into Agriculture and fishing; 16.2% into industry and transport; sales and clerical--19.3%; services--5.9%; professional--8.9%; others-1.8%.
PWID, there are often very limited vacancies and they are located far away from rural communities. Besides these facts, special schools are often not known by most of the Ghanaian population including traditional and religious leaders. There are only few private schools for PWID and the fees that parents have to pay for their children are relatively high. Most children with ID in rural areas and often those in sub-urban areas do not receive any form of education at all. The healthcare system does not cater for the specific needs 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 disability policies are existing on paper, the implementation is very limited and awareness of the Disability Law is low amongst society and the families of PWID. Most NGOs working with PWID face challenges in terms of lack of resources and qualified staff members, which limits their ability to meet their objectives.
1.2 The Disability Situation in Ghana No accurate national survey has been carried out to determine the disability rate in the country. Although the 2010 population and housing census in Ghana formally involved questions about Persons with Disabilities, it was experienced that these questions were often left out in the 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
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.
DEFINITIONS AND LITERATURE
In this chapter we will give some definitions to some of the main terms used in this report and also provide some literature on them as a background for the research. 3.1 Intellectual Disability Intellectual Disability3 (ID) is characterized by significant limitations both in intellectual functioning and in adaptive behaviour as expressed in conceptual, social and practical adaptive skills. PWID experience difficulties in one or more of the following areas: learning, communication, self care, home living, social skills, community use, self direction, health and safety, leisure, and work. An intellectual disability may become apparent early in life or, in the case of people with a mild intellectual disability, may not be diagnosed until school age or later. This disability originates before adulthood. An individual can be mildly affected to profoundly affected. There are varying causes of intellectual disability. Head injuries, diseases, genetic conditions, birth defects and strokes are all possible causes for intellectual disability. Genetic disorders cause down syndrome or fragile X syndrome; and environmental factors, such as alcohol intake before birth, also can cause Fetal Alcohol Syndrome (FAS). Intellectual disability caused by certain infectious diseases (such as rubella) and metabolic disorders (such as Phenylketonuria, or PKU) have decreased as the result of widespread use of childhood vaccines and increased newborn screening. Depending on the severity of the problem, a patient can live a fairly normal life or a totally incapacitated life. It is important for the level of severity to be properly diagnosed for the individual to be helped accordingly. Affected children sit, crawl, stand, walk, and run later than their age mates. They learn to talk much slower than others. They have difficulty speaking once they learn how to speak, for instance they may mumble a lot or stammer. These individuals have difficulty with their memory as well as solving problems, and they do not easily recognize the results of their actions. Some children with ID go to regular schools and may attend regular classes but many need special attention to help them in areas where they have more trouble learning. Ideally, their parents work with teachers and others to come up with individualised education plan (IEP) for the best way for each child to learn. The best known ID are Down Syndrome and Autism.
3.1.1 Down Syndrome Down Syndrome4 is a set of mental and physical symptoms that result from having an extra copy of chromosome 21. It affects all races and economic levels equally. Approximately 1 in 800 to 1 in 1,000 babies are born with the disorder. A child with Down Syndrome may have eyes that slant upward and small ears that may fold over a little at the top. The mouth may be small, making the tongue appear large. The nose also may be small, with a flattened nasal bridge. Some babies with Down Syndrome have short necks and small hands with short fingers. The child with Down Syndrome is often short and has unusual looseness of the joints. Most children with Down Syndrome will have some, but not all of these features. The degree of intellectual disability varies widely from mild to moderate to severe. There is no cure yet for Down Syndrome, nor can it be prevented. Scientists do not know why problems involving chromosome 21 occur. Nothing either parent did, or did not do, caused Down syndrome. Children with Down Syndrome can usually do most things that any young child can do, such as walking, talking, dressing and being toilet-trained. However, they generally do these things later than other children. About 30 to 50 percent of persons with Down Syndrome also have congenital heart defects, and many have some visual and hearing impairment and other health problems with the intestines, eyes, thyroid and skeleton. The severity of all of these problems varies greatly. Down Syndrome is not a condition that can be cured. However, early intervention can help many people with Down syndrome live productive lives well into adulthood. Like all children, children with Down Syndrome greatly benefit from being able to learn and explore in a safe and supportive environment. Being included in family, community, and preschool life will help a child with Down Syndrome develop to his or her full potential. 3.1.2 Autism 5 It is a pervasive disorder of development characterized by three distinctive behaviours. Autistic children have difficulties with social interaction, display problems with verbal and nonverbal communication, and exhibit repetitive behaviours or narrow, obsessive interests. These behaviors can range in impact from mild to disabling. Autism varies widely in its severity and symptoms and
ILO Website: http://www.ilo.org/global/about-the-ilo/press-and-media-centre/news/WCMS_123796/lang--es/index.htm Health Encyclopedia Diseases and Conditions http://www.healthscout.com/ency/68/449/main.html 5 NIH: National Institute of Child Health and Human Development
Definitions and Literature
may go unrecognized, especially in mildly affected children or when more debilitating handicaps mask it. While not specific or universal to the disorder, 50-75% of individuals with autism exhibit lower than average intellectual abilities (APA, 2000, Pellicano, 2007). With no 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 fundamental aspects of quality of life, such as the ability to understand what others feel and think, the ability to communicate your basic needs or socialise with those around you and the necessary understanding to process and make sense of emotions6.
Stigma attached to PWID and their families is harmful, both in itself, since it can lead to feelings of shame, guilt and isolation, and also because negative thoughts often lead individuals to do things, or omit to do things, that harm others or deny them services or entitlements.
3.2 Stigma, Discrimination and Exclusion Intellectual disability-related stigma often leads to discrimination of PWID and their families. This, in turn, leads to the exclusion of PWID and their families or other associates. Stigma, discrimination and exclusion create, reinforce and legitimize each other. They form a vicious circle.
3.2.1 Stigma Stigma has been described as a quality that significantly discredits an individual in the eyes of others7. It has its origins deep within the structure of society as a whole, and in the norms and values that govern much of everyday life. For example, in Ghana, parents of children with intellectual disability are often believed to have deserved what has happened by doing something wrong. Often these wrongdoings are linked to either juju, witchcraft, drug abuse, alcohol intake or its abuse by the mothers of such children. Self-Stigmatization, or the shame that PWID as well as their families experience when they internalize the negative responses and reactions of others, is also evident. Self-stigmatization can lead to depression, withdrawal 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.
3.2.2 Discrimination and Exclusion Discrimination occurs when a distinction is made against a person that results in his or her being treated unfairly and unjustly on the basis of their belonging, or being perceived to belong, to a particular group. Discrimination does not 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 associated with intellectual disability, and the discrimination that may follow from this, the rights of PWID and their families in Ghana are frequently violated. This violation of rights increases the negative impact on these individuals and their families. Schools, for example, may deny PWID education. Or employers may not accept a person for employment on the grounds of the potential employee having intellectual disability. Families and communities may reject and ostracize PWID. Such acts constitute discrimination and violate human rights. At the level of the individual, for example, it causes undue anxiety and distress-factors that are known to deepen their ill-health. At the level of the family and community, it causes people to feel ashamed, to conceal their links with PWID, and to withdraw from participation in more positive social responses. And at the level of society as a whole, discrimination against PWID reinforces the mistaken belief that persons born with intellectual disability are unacceptable and that they should be ostracized and blamed. The family and community often perpetuate stigma and discrimination, partly through fear and ignorance, and partly because it is convenient to blame those who have been affected first.
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Iovannone et al., 2003, Jordan, 1997, 2005 UNAIDS Report - August 2001
METHODOLOGY
4.1 Research Sites The study was carried out in four regions namely: Brong Ahafo Region, Upper East Region, Volta Region and the Greater Accra Region 4.1.1 Brong Ahafo Region 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 (70.8%) has the largest following, while Islam (16.1%) and no religion (7.8%) are the significant others. Large followers of Christianity are in all districts. Islam is practised mainly in Kintampo (29.7%) and Atebubu (24.4%), where Muslims outnumber the two most professed Christian denominations, Catholics (21.4%) and Pentecostals (17.6%). Traditional religion is most practised in Sene (18.8%), followed by Atebubu (15.7%) and Kintampo (10.0%). More than half (57.6%) of the population aged 15 years and older in the region are in marital union. Nearly a third has also never married. The proportion of the population not literate in the region is 48.5% 4.1.2 Upper East Region It is bordered to the north by Burkina Faso, the east by the Republic of Togo, the west by Sissala in Upper West and the south by West Mamprusi in Northern Region. The total 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 found in the region, namely the Traditional (46.4%), Christianity (28.3%) and Islam (22.6%). Within the Christian religion, the Catholics are in the majority. The gap in the educational attainment between the country and the region is still very wide. The lack of education in the 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
Gurma (6.5%). The people of the region originally practised the Traditional religion. However, over a century 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; 21.8% practise Traditional Religion and 5.1% are Muslims. 4.1.4 Greater Accra Region The region shares boundaries with the Eastern region in the South Eastern, Volta region in the South West and the Central region in the South. It has Accra as the capital with 10 Metropolitan, Municipal and District assemblies. Analysis of the region shows that Greater Accra has remained the most densely populated region in the country since 1960. The largest ethnic group in the region is the Akan, comprising 39.8 percent, followed by GaDangme (29.7%) and Ewe (18%). The percentage distribution of religious groups shows the predominance of Christians (82.9%) in the region, compared with the second major religion, Islam (10.2%). Twenty eight per cent of males are household heads compared to 12.7 per cent of females. Where a female is the head of household, it is very likely that it is a single person household or a single parent household. In spite of the minimum legal age of 18 years prescribed for marriage, there is an indication that marriage takes place among persons aged 12-17 years.
4.2 Sample Size The study involved parents/care takers of PWIDs, independent leaders and specialists in the field of Intellectual Disabilities. A total number of 69 leaders/specialists and 53 parents were interviewed in the four regions in Ghana.
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 Consultants Ghana Education Service Government Officials Health Officials NGO Leaders Religious Leaders Social Workers Special Educators Traditional Leaders
No. of Persons 3 12 5 2 13 5 2 22 5
Total
69
8 See Annex 3 for a list of the individuals of this sampled group
Methodology
4.2.2 Parents/Caretakers of PWID The parents or care takers that were interviewed for the study were mostly related to the member organisations of Inclusion Ghana. This surely had an effect on the level of knowledge on intellectual disability and its causes. However, it was often felt that parents did not share all experiences and were trying to give a more positive picture of the situation than actually is the case. Because of the stigma in Ghana, we were not able to interview parents that actually hide their children from society and therefore cannot incorporate their level of knowledge in the study. The parents whom we identified as those who hide their children were not willing to collaborate in the study.
3 group discussions with independent leaders 50 semi-structured interviews with parents/care takers of Persons with Intellectual Disability 3 group discussions with parents of children with intellectual disability Non-participant observation On average it took one (1) hour to finish an interview. For the parents' interviews, locations were selected where the privacy of the participant could be guaranteed as much as possible. The findings of this report are subjected to some limitations following from the research methods used. The 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 the parents of PWID and to financial and practical constraints it was not possible to visit every district in each region. We chose to select at least two districts per region so we can reach out to more parents. At the end of the research we interviewed people in a total of 11 districts. Researchers have found that due to a social desirability bias, the reliability of the answers of the respondents was sometimes influenced. Therefore, the results of this research cannot be generalized.
4.3 Research Design In order to explore the research question and objectives, the researchers used a combination of quantitative and qualitative data collection methods to come to a reliable report. The following methods of data-gathering were used: secondary data Analysis of 66 semi-structured interviews with Independent Leaders / Specialists from government institutions, special schools, churches, etc
5
5.1
KEY FINDINGS: A grim picture with glimmers of hope
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.
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 marital status is were married or remarried, whereas 21% of the parents were divorced. This does not scientifically prove the assumption that a lot of fathers leave the mothers when they find out about the disability of their child. However, it was observed and estimated by specialists that as many fathers leave the mothers when they find out their child is intellectually disabled, same number of mothers also leave the fathers noticing their child has an intellectual disability. Independent leaders and specialists also mentioned that, also because of the stigma, a lot of parents fear to share the experience of their broken marriage and prefer mentioning that they are still married although they live separately from their husband or wife. 5.2 Awareness of Intellectual Disability Issues 95% of the independent leaders/specialists said they were familiar with the term intellectual disability whereas 60% of the parents know the term. Most descriptions that were given as an answer to the question to describe intellectual disabilities were pointers in the direction of people that are unable to speak, talk, reason or move like their peers or show a slower development than is usual. Autism (42.5%) and Down Syndrome (45%) were mentioned most as intellectual disabilities people know. Epilepsy and hyperactivity were also mentioned. Most parents whose children are identified with autism or down syndrome could only mention or describe that specific type of disability as what their children have, 28% of the parents could also mention another type of ID. It needs to be mentioned that the independent leaders/specialists that were interviewed were mainly people that were in some way familiar with intellectual disability already. They were mostly introduced to us by our member organisations, who have done some good work in ID education/awareness raising. Therefore it is assumed that the sample taken in this research is not representative for the level of knowledge all over Ghana. Unfortunately a similar interview with a sample of the Ghanaian population in general was out of scope of this study. 5.2.1 Causes of Intellectual Disability Three of the parents explained their thoughts about the causes of intellectual disabilities with the following stories: My wife left me for another man during her pregnancy. She was punished by the gods by giving birth to my autistic son. She brought me the son and left.
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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 / diseases
Accident Spiritual cause / juju Medical error Other
Figure 5: Causes of ID
Most respondents mention medical reasons as (one of) the cause(s) of intellectual disability. Amongst the 'other' answers people mainly mentioned that improper care during pregnancy, drinking alcohol and abusing drugs during pregnancy were causes of intellectual disability. Convulsion and failed abortion were mentioned in some cases as well. Spiritual causes were frequently mentioned although most respondents refer to the fact that other people think spiritual forces are causing intellectual disability and said they did not believe that themselves (anymore). In Brong Ahafo region, some independent leaders mentioned that if parents of this group of children have money, people believe that income was being generated by using their children for offering ceremonies or other spiritual rites (juju).
Only one of the respondents believes that PWID are responsible themselves for their impairment and explained this as the fact that they have taken too much drugs. 11% of the parents feel they have a responsibility for their child's impairment. 5.2.2 Treatment or Cure of Intellectual Disability God works in a mysterious way. We have been praying and my son gets better slowly. In the end he will be cured, a parent explained when asked about whether intellectual disability can be cured.
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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 Dont know
Figure 6: Treatment or Cure of ID Inclusion of Persons with Intellectual Disability in Ghanaian Society In the perspective of this study inclusion was defined as all components that influence the integration of PWID in the Ghanaian society. To measure the level of inclusion of PWID, questions about their inclusive education/special education, employment, health care system, attendance in church or mosque and social events were asked. 5.3 The concept of Inclusive Education (IE) directly and indirectly has been embedded in several Government policies since independence. The aspiration for inclusive education dates back to 1951 when Dr. Kwame Nkrumah, in the Education Reform under the Accelerated Development Plan, introduced fee-free compulsory basic education for all children aged five and below sixteen. It sought to expand access to education to all; narrowing the 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 After independence, successive governments have consistently pursued educational policies aimed at expanding access for disadvantaged groups and limiting exclusion from quality education. Ghana has ratified several international conventions on the right to education including the United Nations Declaration of Human Rights, UN Convention on Rights of Children, UNESCO statement on principles and practices of Special Needs Education, the Education for All (EFA) goals and Millennium Development Goals. These have been incorporated into national laws.
5.3.1 Inclusive Education / Special Education Ghana considers a quality human resource base as very crucial in its development efforts to ensure socio-economic well being of its citizens, and education plays an important role in this regard. Taking this direction, various policies have been initiated to enable citizens, especially children irrespective of their socio-economic background, to have access to formal education to develop their potential and have equal opportunities to contribute to the development of the country. This is based on the fact that the potential of children should be fully developed to contribute their quota towards the country's development efforts.
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
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The main legislative instruments which have promoted the adoption of Inclusive Education policies in the last 20 years in Ghana includes: Article 25(a) of the 199210 constitution states: All persons shall have the right to equal educational opportunities and facilities and with the view to achieving the full realization of this right, basic education shall be free, compulsory and available to all. The Children's Act (560) of 1998 also enjoins government to promote the physical, mental and social well-being of every child. The Disability Law (Act 715) of 2006 provides for the establishment of Special Educational schools for children with severe special needs education. Parents and guardians/care givers are to enroll them in schools depending on their level of disability however there should be no barrier to their admission. The Education Act (778) of 2007 "Provide for inclusive education at all district levels" (Article 5). It also makes two years kindergarten part of basic education, extending basic education to 11 years. The Ministry of Education (MOE) has a Special Education Division (SPED), whose objective is to increase access to quality education and to train the youth and children with special educational needs, leading to employable skills for an economic and independent living. The Education Strategic Plan (2010-2020) claims that all children with nonsevere special education needs will be incorporated into mainstream schools by 2015.11 Despite the policy of inclusive education, there are still a large number of children and youth with intellectual disability who are are not helped from undertaking basic education in regular schools. Also, others with very mild intellectual disability do not complete basic education due to hostile teaching practices adopted by some of the teachers. It is estimated that only up to one percent of PWID have access to education in Ghana. It is only in 2007 that the subject of special needs was incorporated in the subjects taught at the several teacher training institutions.
10
Therefore it is estimated that 90 to 95% of the teachers have not had any form of education on the special needs for this group12. In 2005 SPED developed a new curriculum for school that educates Children with Intellectual Disability (CWID). The new curriculum involves 6 years of basic education, 4 years of pre vocational preparation and 2 years of attachment with service providers. However, this is still only a pilot project that has been implemented in 2 specials schools in Ghana and the Special Education Division points out that funding of this new policy is a major challenge. Until the end of 2010 the attention given to this group of children with special needs in the government was low. The former Minister of Education promised however to allocate more resources to this area. The latest available statistics (2011) shows that SPED runs 13 special schools13 for children with intellectual disability, which focus their education on training in social behaviour and activities for daily living skills. In addition, there exist 24 units14 for special needs children with intellectual disability (Integrated schools). There is however no central records for private schools in Ghana but New Horizon School, Autism Awareness Care and Training Centre and Multikids Academy have been identified as some of the private schools supporting the education of CWID. According to data provided by the Special Education Division of the Ghana Education Service (GES) in 2011, approximately 1860 children with intellectual disability attended education provided by the government. There is no reliable data that could be retrieved on the total number of children with intellectual disabilities that get any form of education from private schools. Besides, the number of children on the waiting lists of the special schools or special units is high. The SPED has the ambition to open 20 new units for CWID per year but foresee the budget that will be allocated for that will not be sufficient. All respondents to the questionnaire see the value of education for CWID. None of the respondents mentioned that no education for them is needed. The opinions about whether CWID should go to regular schools or special schools were divided. 44% of the leaders thought CWID should go to special schools or institutions whereas 64% of the parents had the same opinion.
11
The Republic of Ghana (1992). The Constitution of the Republic of Ghana. Ghana Publishing Company, Accra 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)
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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
Teachers also believe that amongst the group of people with low income, the interest in education is very low. They will miss income if they send their child to school or need to spend money on transport to school. This counts for children without disabilities, let alone those with intellectual disability. If you have 5 children and only a few Ghana Cedis to spend a day, which child will you not allow to go to school to save cost?
5.3.2 The Health Care System One of the main components for securing good health is the provision of quality health services. The Ghana Health Services under the auspices of the Ministry of Health (MOH) identifies priority intervention areas for improving the health of children.
In line with the Ghana Poverty Reduction Strategy (GPRS) and to address the problem of financial barriers to health care access, the Government in 2001 initiated a National Health Insurance Scheme (NHIS) to deliver accessible, affordable and good quality health care to all Ghanaians especially the poor and most vulnerable in society. The National Health Insurance Law Act 650 came into effect in October 2003. Under the National Health Insurance Scheme, health care for Persons with Disabilities should be free but in rural communities most families are not registered under the scheme. This affects PWID because of the higher frequency of illnesses they suffer. A top official at the National Health Insurance Scheme explained to one of our researchers that even staffs working with the scheme are not often aware of this arrangement. The Disability Act 2006 contains provisions that provide for children with severe disabilities thus access to free healthcare, but the person has to be able to go to a health clinic and needs to know about the contents of this law and ask for arrangements. The knowledge of these rules is low. Due to lack of knowledge on ID issues, most families or relatives take their CWID to mental hospitals for diagnosis and treatment. Even though the mental hospitals do offer some help there is lack of specialism in ID. More often than not, wrong interventions are given. Also at the mental hospitals, mishandling by unqualified support staff, torture, physical, sexual, psychological and verbal abuse are the order of the day. Isolation of such persons from society makes them completely invisible and forgotten by all including policy makers.
During the interviews we were often told that the doctor said he could not do anything about it, or the child would grow out of the problems. Parents often responded to this diagnoses by waiting and praying. Most doctors in Ghana, especially those in rural areas, only seem to have very basic knowledge about intellectual disability. For them the 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 what their local doctor tells them 15 Two parents narrated what some doctors told them when they took their children to the hospital for diagnosis: You wouldn't believe me if I told you that my doctor said that I was the cause of my son's disability. I must have drunk too much alcohol or used drugs My son could still not speak when he was 5. When I saw my doctor he said I just needed to be patient. So I went home Besides the fact that most doctors in Ghana seem to have only a basic knowledge about ID and so are not much helpful, there are only a few specialists in Ghana who have experience in supporting families with PWID. Ghana has for example 6 speech and language therapists of whom 1 is retired and is based in Kumasi, all others have their work places in Accra. The clientele therefore is mainly (around 75%) from the Greater Accra Region whereas a few come from other regions in the country. Only parents who have real dedication to help their child, and in most cases are well educated or have travelled abroad know about the added value of speech therapists and seek for their services. Doctors in general also do not know about the support the therapists can give children with intellectual disability. The therapists get some referrals from doctors in Accra but the number of doctors who know about therapists places and services can be counted on one hand. The therapists also have waiting lists for therapy services and suffer from a lack of funding to do all the work they want to do.16 There are also specialist doctors that can be counted on one hand, mainly operate in the teaching hospitals in the big 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 16
Interview with a Doctor at the Korle Bu Teaching Hospital Interview with Nana Akua Owusu, a Speech and Language Therapist Korle Bu Teaching Hospital
15
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 difficult
Not difficult
Dont know
Figure 9: Difficulty of getting good health care support for PWID

5.3.3 Assessment of Persons With Intellectual Disability
The National Assessment and Resource Centre (NARC) for Children with Disabilities, based in Accra was established in 1975 to augment the efforts of the Ministry of Education. The NARC has regional branches and its mission is to enhance the educational opportunities of children with disabilities and special educational needs, through the provision of avenues for early identification and detection, for the promotion of appropriate medical interventions and educational and vocational placements. NARC in Accra has a work relationship with the psychiatric hospital in Accra. After a first assessment at the centre where an intellectual disability is suspected, children are referred to the hospital for further assessment. Based on the outcome of that assessment, NARC advises parents where to take their child to school.
17
In 2010, NARC assessed 96 children with intellectual disability (59 boys and 37 girls) and in the first quarter of 2011, the number of assessments done was 31 (22 boys, 9 girls). The number of yearly assessments is increasing. Staff feels that people in Ghana are getting to know the assessment centre better and seem to start seeing the value of education for PWID. NARC deals with a difficult situation and often does not have the right equipments to assess the different disabilities of the children. The NARC is formally the only centre for assessment of CWID which means parents from other regions with little money would find it hard or nearly impossible to access the Centre. The deplorable state of their building may be another sign of how seriously the care for children with special needs is being taken by the Ghanaian Government.
Interview with a Doctor at the Korle Bu Teaching Hospital
16
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
5.3.4 Employment By ratifying or signing the United Nations Convention on the Rights of Persons with Disabilities adopted in 200818 by GoG, the rights of persons with disabilities, including PWID, have been given some impetus. The Convention requires states including Ghana to provide training and employment opportunities for PWDs jobseekers alongside non-disabled workers. Families often provide the main support for persons with intellectual disabilities, whether they are adults, children, or adolescents. The care of family members with intellectual disabilities by productive adults means that one or more parents are not able to access paid work or must work fewer hours or give up on job advancement. This exacerbates the family's economic and social situation, contributing to a vicious cycle of poverty and exclusion. Research that has been done in the past focusing on disabilities in general seems not to include PWID. Even the Centre of Employment of PWDs in Ghana, an NGO, mentions that the number of PWID in their records can be counted on one hand. More than for any other group, including people with other forms of disability, for PWID, unemployment rates and exclusion from employment and other services in their communities are high. There is a general perception that PWID are not capable of doing anything useful, employers are also afraid to lose customers when they employ such persons. PWID want an opportunity to be included in a range of life experiences in the same way as the non-disabled or as persons with other
types of disability. For the vast majority of PWID, the opportunity to engage in work in the general community has been denied them. Yet experience shows that many can successfully perform a wide range of jobs and can be dependable workers, given the appropriate training and support. Work not only helps to provide them and their families with the means to meet their basic necessities, but also allows them dignity and self-respect. Three respondents explained the situation of employment of PWID with the following statements: It is hard to find jobs for everyone in Ghana, so it's impossible for people with a disadvantage. I don't know, I just pray that my daughter's situation will improve and she will be able to find a job when she gets older. It is hard work to find employers who are willing to put effort in guiding PWID in their workplaces. The research showed that 71% of respondents think it is very difficult for PWID to get employment in Ghana. Parents were more optimistic than the independent leaders and specialists we spoke to. They referred the questions to the specific situation of their child and often hope they will develop so that they will be able to find employment and become financially independent. The 14% of the respondents that were somehow neutral or positive, those who replied with somewhat difficult, not difficult or don't know were all parents.
How difficult do you believe it is for a PWID to get employment
Very difficult Difficult Somewhat difficult Not difficult Dont know
Figure 12: Difficulty of getting employment for PWID

18
http://www.ilo.org/global/about-the-ilo/press-and-media-centre/news/WCMS_123796/lang--es/index.htm
18
Difference in argument to their answers was that independent leaders mostly look to it from the point of view of the more severe stigma to PWID compared to other PWDs, whereas some parents don't acknowledge the fact that their child has a problem. And again the hope of parents for their child to further develop played a role in their answer to this question. The research also showed that all independent leaders/specialists agreed with the statement that PWID are less likely to be hired for a job than those with other forms of disabilities or without disabilities even if they are equally qualified. Parents were more optimistic about potential employment for their children in future. 23% of them believed that it will not be challenging for PWID to find employment than for other disability groups. One parent said: You can't see from the first moment that my child has a disability whereas it is obvious when someone is blind. Therefore I don't agree with the statement. It was observed that parents from the rural areas in Ghana who have a low level of education themselves are more positive when it comes to the chance for their children with ID to get employment than those with higher education. Examples of petty trading, farming and carrying loads were mentioned as potential employment.
PWID are less likely to be hired for job then others

Agree Neither agree nor disagree disagree
Figure 13: Parents perception of discrimination in employment
Marriage and Family Life Marriage is a very important stage in the life of the Ghanaian. The main aim of getting married is to have children. There are different ways of choosing partners. For example, in some communities in Ghana, parents choose partners for their children. When a father feels that his son is ready for marriage, he finds a suitable wife for him. In the past, most parents betrothed their daughters before they were old enough to marry. Nowadays, parents who choose partners for their children seek the children's consent first. In some cases too, the young people make their own choice and inform their parents. It is the customary practice for a man to seek the hands of a woman in marriage. In most communities it is a taboo for a woman to propose love and marriage to a man. In the Ghanaian traditional set-up, marriage involves the man and the woman concerned as well as their families. Before the marriage, most families try
5.3.5
to investigate each other's family background. They do this to find out if there is anything that will prevent a successful marriage. They investigate to find out answers to questions such as: are there any communicable or hereditary diseases like tuberculosis (T.B.), leprosy, insanity, autism, or epilepsy in the family; had there been any criminal record, e.g., murder or stealing?; can the man look after a wife? From the interviews it became clear that more respondents perceive it is very difficult for a PWID to marry someone who does not have a disability. Some respondents say it is better or in a lot of cases only possible for PWID to marry each other because they will understand each other better and probably non-disabled persons would not want to marry a PWID. In some cases money was related to the possibility of getting married or not and also abuse of girls with Intellectual Disability was mentioned.
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Leaders Parents
Very difficult
Difficult
Somewhat difficult
Not difficult
Dont know
Figure 14: Difficulty of getting marriage for PWID
Regarding the way forward for PWID getting married, a question was asked about the ideal state of whether PWID should get married and have children. 72% of the parents think that PWID should be able to get married whereas 42% of the leaders shared the same opinion. Leaders often mention that it depends on the level of disability if a person should be able to get married. 54% of the respondents think PWID should be able to have children, whereas 18% disagreed on that statement.
Leaders Parents
Agree Neither agree nor disagree disagree
Figure 15: Perception on whether PWID should be able to get married
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5.3.6
Social Life & Participation in the Family and Community
Regarding the question related to PWID participating in Decision making, some respondents made similar comments saying: Whenever decisions are made, PWID are not involved because nobody values their opinion. At a social gathering, the presence of a PWID make people feel very uncomfortable so who will invite them to a social gathering or ask their opinion about a situation. They cannot do anything meaningful to help in the society and within the family so nobody will invite them for ideas. 78% of the parents however replied positively to the question if their child was doing small house hold tasks in the house, whereas 22% answered 'no' to this question. Reasons that were given as not involving their children in house work, were that they cannot do it or do not like doing it. Respondents were also asked how they felt about PWID generally. The responses were feeling: Pity (25%), Compassion (25%) and Sadness (24%). Fear, Avoidance and Insults formed 10% of the answers, whereas 15% answered with other reasons. Regarding the question of PWID having a social life, 73% of the independent leaders consider PWID having a social life as difficult or very difficult, whereas parents are more positive by replying in 35% of the cases that it is not difficult to have a social life for their children. Many of these parents refer to the fact that their children are very sociable and therefore make friends themselves. Persons with down syndrome are seen as very sociable and are therefore better integrated in social life in Ghana than persons with autism. Some parents described the social life of their children with the following statements:
Yes, my child is included in society but only because I, as his mother, put a lot of effort in telling everybody what they need to know to accept him. If they stare at him I ask them what's wrong and if I can help them. My colleagues don't know about my child's disability. They may treat me differently and I don't want that. Everybody loves my son, they think he is funny.
We were able to speak to a few persons with intellectual disability themselves who indicated their friends were not many. It was obvious that these children were not used to being spoken to and in one case the father started shouting at the child that he should hurry answering the question and at least look the interviewer in the eyes, whereas this child obviously had problems speaking and needed time to find the right words.
5.3.7 Participation in Church and Mosque Activities In general people believe that it is slightly or not difficult for a PWID to be a member of a church. However even some parents who said it was not difficult, shared their experience on having to go to several churches before they found one that accepted the child or had people telling them not to take the children to church or the mosque because he /she may walk around and make noises that will embarrass them.
Some parents also indicated: Even in church a lot of people don't want to come close to my child. My daughter won't kneel down at prayers, so I don't take her to the mosque.
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How difficult is it for PWID to be an active member of a church or mosque
Parents Leaders
Very difficult
Difficult
Somewhat difficult Not difficult
Figure 16: Difficulty of participation in Church or Mosque
Discrimination and Stigmatisation of PWID in Ghana It is known that in Ghana the stigmatization and discrimination of persons with disabilities is significant and it is assumed that persons with intellectual disabilities suffer from more discrimination than people with other types of disabilities. Main cause of the stigmatization is most likely to be the low level of knowledge about the disabilities as well as the traditional beliefs that disabilities are caused by witch craft, a curse of God or so called juju. 82% of the respondents agree with the statement that PWID are discriminated in Ghana whereas 9% do not agree. The question as to what extent people believe PWID are discriminated in Ghana shows a different picture. More parents than independent leaders believe the discrimination is only sometimes whereas most independent leaders believe the discrimination is all the time. Clearly, many factors underpin the forms of stigmatization, and discrimination described. Many of these relate to the very real fear of persons with ID that exists among the general public. The sources of this fear are complex and include lack of knowledge and understanding of PWID, as well as the manner in which people believe that when you relate to such a person you shall contract same or you shall give birth to such children in the future when in fact it is not true. The experiences of some of the parent respondents revealed the following:
5.4
I am still very conscious of who to tell about my son's disability and who not. People don't understand. My colleagues don't know about my child's disability. They may treat me differently and I don't want that. My ex-husband didn't like my daughter and so didn't like me. He left us when she was 8 months old. My wife left me when she realized that our son could not be cured and people were calling her names. She said, 'living with our son would be trouble'. She was very frightened. Yes my child is discriminated against in Ghana, not per se by individuals because I don't allow that, but by our government. They leave children like my son out of their policies PWID are the most discriminated against amongst the Persons with Disabilities. The stigma of this group is very serious. He used to go outside the compound of the house but children in the neighbourhood were teasing him and throwing stones at him. So we
22
confined him for some time in the room. He used to be indoors always. Now we leave him outside but only in the compound of the house. A teacher at a unit for special education needs for PWID in Navrongo in the Upper East Region narrated how he is discriminated against just because he is a special educator for PWID. He told the interviewers that he was called the teacher of fools or the fools teacher. Again when getting directions from somebody and it happens that the school is used as one of the directional signs, you will hear the one giving the directions describing the school as the school for the foolish people.
Do you think PWID are discriminated against in Ghana
Parents
Leaders
yes, often
yes, sometimes
no, not at all
dont know
Figure 17: Perceptions of discrimination against PWID in Ghana
Observations during the interviews and talk with specialists in the field showed that parents are often embarrassed to admit they experience discrimination. Many also are reluctant to admit that their own efforts at advocacy and awareness raising have helped to reduce discrimination against their children. Teachers in the special unit schools of GES mentioned that thanks to the fact that the special units are amongst regular schools, the discrimination is decreasing although still considerable in Ghanaian daily life. During the interviews, the question was asked what can be done to stop discrimination towards PWID. Respondents answered that one way to stop discrimination mentioned by the majority of the respondents is education and awareness-raising about the disability, either by NGOs, Government, or Churches. Some respondents strongly pointed out that education needs to begin from the home, which means that parents have to treat their children with intellectual disability with respect and show them that they are just like anybody else. This will increase the self-
respect of PWID, their behaviour and therefore the way society perceives them. Existence and Implementation of Disability Policies & Strategies targeted at PWID In the interviews respondents were asked if they were aware of legislations on disability and if so, to mention some of its contents. The majority of the respondents did not know of the existence of any legislation and the ones who knew of for instance the Disability Law often did not know what the Act is about. The study shows that the knowledge amongst Parents and Care takers of the legislation on disability is low. 41% of the parents are not aware of any legislation whereas only 35% of the parents can mention the name of the Disability Law. Further questions on the contents of the act gave the impression that out of 35% who mentioned the Act, a maximum of 10% could mention something about the contents of the Act. If the knowledge is this low, it will be hard to make use of the provisions under the act. 5.5
23
Are you aware of any legislation for PWID
No Disability Act (715) Yes but cant name any
Figure 18: Level of awareness of any legislation for PWID

The general opinion of independent leaders and specialists is that implementation of the Disability Law needs to be given more attention by the Government to include PWID in society. The Persons with Disability Law was passed in June 2006 and guarantees PWDs access to education, employment, transportation, public places, and free general and specialist medical care. The Law addresses all major disability concerns but does not make provisions for the socalled hidden disabilities (those that are not easy to detect). The Act has 12 main objectives and provides guidelines for the relevant sectors on how they should respond to the needs of PWDs: To educate Ghanaians on the rights, potentials and responsibilities of both society and PWDs b. To generate and disseminate relevant information on disability c. To create an enabling environment for the full participation of PWDs in national development d. To ensure access of PWDs to education and training at all levels e. To facilitate the employment of PWDs in all sectors of the economy f. To promote disability friendly roads, transport, and housing facilities g. To ensure access of PWDs to effective health care and adequate medical rehabilitation services h. To ensure that women with disabilities enjoy the same rights and privileges as their male counterparts
19 20
To ensure that law enforcement personnel in cases of arrest, detention, trial and confinement of PWDs take into account the nature of their disabilities j. To encourage full participation of PWDs in cultural activities k. To ensure access of PWDs to the same opportunities in recreational activities and sports as other citizens l. To promote CBR Programmes as a means of empowering and ensuring the full participation of PWDs in society The Act also established the National Council on Persons with Disability (NCPD) with the goal of proposing and evolving policies and strategies to enable PWDs to enter and participate in the mainstream of the national development process of Ghana. 19 The Council is made up of high-ranking representatives from a number of key ministries as well as from Organizations of Persons with Disability (OPWDs) and organisations or institutions working for PWDs. Persons with Intellectual Disability are represented on the board of the council by the Director of the Autism Awareness, Care and Training Centre, who is also a board member of Inclusion Ghana. The Council coordinates overall disability related activities in Ghana and function as advisor to the government on disability issues. The council also monitors the implementation of the Disability Law. 20
i.
a.
UNDP, 2007, p. 130. GFD, 2008.
24
Other legislation include the National Disability Policy Document, December 2000 and the 1992 Constitution. The National Disability Policy Document which secures the specific rights of PWD was passed by cabinet in December 2000. This policy was largely in response to the UN Standard Rules on the Equalization of Opportunities for PWD (UN, 1993). It legislates PWD rights as regards to education, transportation, community acceptance, housing and employment (MoESW, 2000).
Under the 1992 Constitution, persons with disabilities (PWD) are guaranteed protection against all exploitation and treatment of a discriminatory, abusive or degrading nature by the constitution (Article 29). It also mandates the legislature to enact appropriate laws (Article 37) and requires access to FCUBE (Article 38). Provision is also made for special incentives to be given to PWDs engaged in business and also to business organizations that employ PWDs in significant numbers.
25
CHANGING ATTITUDES
in the Local Government Act. It is the duty of the District Assemblies to plan and secure implementation of services with assistance from specialized Governmental Agencies and NGOs to enable PWID to go to school, have access to quality health care, secure skills training and support for employment and income generating opportunities and participate in the social life of their communities. The answer to the question what can be done by the Ghanaian government to improve the situation for PWID was answered from many different perspectives but education was often the bottom line. Teachers often mentioned that more teachers should be trained in the special needs for PWID but also regularly mentioned the poor salaries for special educators and the lack of teaching materials, whereas some teachers in regular schools seem to have the opinion that the special needs teachers are not doing anything useful and should therefore get lower salaries A parent interviewed as part of the study reported that: The big men in the country give priority to things that are for their own benefit. They often don't even know about the problems PWID face. A teacher also indicated: There is no incentive to become a teacher in a special school although we have a more challenging job than our colleagues in the regular schools. It was also noted that the government does not pay enough attention to special education in Ghana. The waiting lists in the special school and the small number of special schools that are in operation at this moment suggest that further attention in this field is much needed.
The research did not only focus on analyzing the current situation for PWID in Ghana but also asked respondents questions about what would improve the situation. Questions involved contributions of governmental institutions, NGOs, media, parents and PWID themselves. Opinions of both independent leaders and parents on this matter are described below: Most respondents see education and sensitization of the public as the answer to the discrimination of PWID in Ghana. Leaders often mention that it is thanks to the fact that more and more people learn about intellectual disability because of their studies, television programs, work or experiences that the situation for PWID is slowly improving. The fact that there are integrated schools (units for special needs children within the same compound of public schools) helps children to accept their peers with intellectual disability from an early stage.
6.1 The Role of Government The Ghanaian government is a constitutional democracy headed by a President. The parliament has 230 seats, all elected on 4 year terms. The country is divided into 10 administrative regions and 166 districts and 10 metropolitan and sub-metropolitan assemblies. In order to democratize, decentralize state power, and institutionalize decision making at the grassroots level, the 1992 Constitution effectively decentralized political and administrative authority under the District Assemblies. The District Assemblies make and implement decisions and engage in activities required to meet the needs of the people in the areas under their jurisdiction in economic, educational, health, environmental hygiene, recreation and utility services. This means that the needs of PWID have to be administered at the district level, as spelled out
What can be done to improve inclusion of PWID by the government
em en ta tio n
tio n
pe op le
ed uc a
Im pr ov e
Figure 19: Improve Inclusion by Government

26
Im pl
Ed uc at e
Ed uc at e
te ac he rs
of La w
fo rP
Ot he r
ID
on
ID
Changing Attitudes
People feel that the opportunities for PWID to go to school and to learn are too few, while education of the public on Intellectual Disability also needs urgent attention. A GES Director indicated: Before I got this job, I had a different opinion about PWID than I have now. The government should include topics on ID in more studies, so that more people learn about the situation of PWID Amongst the other answers respondents gave, they referred to improvement of the health care system, education of doctors and nurses and opening special institutions where PWID could live.
criticism of government policy. Animated phone-in programmes are staple fare on many radio stations. Radio is Ghana's most popular medium, although it is being challenged by increased access to TV. The number of people who have access to the internet grows every day, and mobile telephones are becoming a significant source of news. The media indeed has an important role to play in the improvement of the situation of PWID in Ghana. Education of the public on ID issues and discussion of the subject for example on their morning shows were often mentioned by respondents. Some of the specialists mentioned that the media do not always use the right source of information or invite someone who is not a specialist in the area and therefore give wrong information to the public. They advise that the media should be accurate and correct with their information when they spend time on the subject on television. Some respondents also mentioned the fact that journalists expect money before publishing news on ID in the newspapers has a negative effect on the number of articles published in the diverse media.
6.2 The Role of the Media Ghana enjoys a high degree of media freedom and the private press and broadcasters operate without significant restrictions. The Commonwealth Press Union has described Ghana's media as "one of the most unfettered" on the continent. The private press is lively, and often carries
What can be done to improve inclusion of PWID by the media
Educate
Seek right resources
Discuss/publish info
Advocate
Figure 20: Improve Inclusion by Media
27
Changing Attitudes
6.3
The Role of Parents Parents should be the role models in improving the situation for PWID. If a mother hides her child, how can she expect others to treat the child fairly? was a statement made by one of the teachers in the special schools
Parents should play important roles in the improvement of lives of PWID in Ghana. Especially those who are well educated and whose children are diagnosed with specific type of disability often do a lot of research in this area and are the best advocates for their children's rights. A considerable number of parents indicated during the interviews that it is thanks to their efforts that their children are being accepted in the community or in society. Most respondents mentioned that parents should show pride and love to their child and support their child in their development. This would help to improve their situation and that of their peers on the longer term.
What can be done to improve inclusion by parents of PWID
nt lk ild hts ren ch me /ta rig ild f n e r r t ch ei eo ve ca ort go vo rid r th p fo pp Ad sh w Su up Pu ho S nd Sta

Figure 21: Improve Inclusion by Parents
r the O
6.4
The Role of PWID themselves The champions of this group of disadvantaged people should stand up and advocate for their rights and show that improvement is a possibility, an NGO leader indicated.
41% of the respondents believe that PWID cannot play a role in improving their inclusion in society. Socialization (25%) and advocacy (16%) were mentioned as things PWID can do themselves. It needs to be mentioned that socialization was often mentioned from the perspective that the PWID are responsible themselves for exclusion because they do not socialise. A substantial number of parents of children with autism, for example, mentioned this as one of the things their children could or even should do, whereas in a lot of down syndrome cases and as part of their disability, socialization is a way of life.
28
Changing Attitudes
What can be done to improve inclusion by PWID themselves

Accept disability Socialise Speak for yourself/Advocate Other Nothing
Figure 22: Improve Inclusion by PWID themselves
6.5 The Role of NGOs NGOs are often seen as the institutions that should take initiatives to improve the situation for PWID. According to most of the respondents, NGOs support a lot with funding and should therefore use those funds to start more special schools, vocational training schools, hospitals, etc. At the same time there was the assumption of some of the respondents that NGOs use funds given by donors for the wrong purposes and so should be checked. Education, once again, was mentioned as one of the gaps the government leaves for NGOs to fill, whereas health care and implementation of the law were also frequently mentioned. Amongst other answers given, financial support for parents to pay for schools fees, transport or medical support, was also common.
What can be done to improve inclusion of PWID by NGOs
Fill gaps of government
Advocacy
Other
Nothing
Figure 23: Improve Inclusion by NGOs
29
CONCLUSION
nongovernmental 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.
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. In Education for example, most professional teachers even though are not trained in special education held exaggerated fears about children with ID which profoundly affected their ability to admit such children in their class. Children with ID were often denied the rights to go to school or were segregated from other children. 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,
30
RECOMMENDATIONS: Opening New Doors to PWID and their Families

8.2 Implementation and Improvement on Government Policies should be given to assessments of Attention PWID. When a person is not properly assessed, support given may not be relevant and can even do harm. Promote inclusive education for the children with mild disorders, and integration of special units in compounds of regular schools, using the same playground. training of teachers and the inclusion of Promote intellectual disability issues in curriculum of teachers, nurses, social workers, etc. Create vocational training for PWID and advocate for employment via employers number of Unit Schools for Intellectual Increase Disability, also in rural areas, improve infrastructure and provision of tools and inform key players about these schools. Within the health-care setting, ensure that intellectual disability is taught within professional training curricula especially for community nursing so that such children or persons with ID will easily be identified. Implementation and regular monitoring of the Disability Law. of the public and parents of PWID on Education the Disability Law and disability issues in general. Special consideration should be made for PWID to also access the District Assemblies Common Fund. Legal protection for PWID is a powerful way of redressing, and thereby mitigating, the unequal power relations, the social inequality and the exclusion that lie at the heart of ID-related stigmatization and discrimination. Such protection should be promoted, together with appropriate reporting and enforcement mechanisms.
In order to reduce levels of stigmatization, discrimination and exclusion associated with intellectual disability in Ghana, a number of interrelated actions are needed. Failure to act now will have the severest consequences. The following recommendations seek to address many of the points made in the study and to establish the grounds for proper dialogue about how to effectively challenge stigmatization, discrimination and exclusion of PWID in Ghana:
8.1
Meeting the Needs of Parents and Families of PWID A more enabling environment needs to be created to increase the visibility of PWID and to facilitate the formations of parents self help groups so that stigma, discrimination and exclusion can be challenged collectively. a lack of knowledge and a need for There is education of parents about the rights of their children and about how to get help to challenge discrimination they face in schools, health care settings. Sharing experiences in parents self help groups would be a way to deal with both issues. More education on the laws, rules and regulations and access to the justice system to address violations of their children's rights in the contexts of employment and education needs attention. and awareness raising of parents will Education hopefully contribute in acceptance of their children's disability and will be a start to think of the future of these children . of life-skills education and counselling Promotion to help parents and caretakers of children with intellectual disability cope with stigma. is needed for social change in response Advocacy to intellectual disability-related stigmatization, discrimination and exclusion. The role of parents and families of PWID and of religious and political leaders in such a process cannot be underestimated.
31
Recommendations: Opening New Doors To PWID And Their Families
8.3
Media Intervention Raise awareness so that families and PWID can access interventions (e.g. care and support services) as they become available, or hold authorities accountable if such services are not available. Public information campaigns have an important role to play in helping people understand the unfairness and unjustness of stigmatization and discrimination of PWID. They can also change individual and social attitudes. for positive portrayal of PWID and Lobbying change of terminology in the media.: The media needs to involve PWID in programmes Media campaigns: television and radio shows in local, understandable language about PWIDs issues. Sensitization of government institutions, businesses, corporations, schools, and hospitals about intellectual disability issues. Media Campaigns to encourage parents to send their children with ID to special or regular school: parents and families have to be made aware of educational capacities of their children.
8.4
The Community is key in communities about some identified Education causes and prevention of intellectual disability, capabilities of PWIDs, the need to send children with intellectual disabilities to school and the contents of the Disability Act. portrayal of PWID at grassroot level Positive through role models. Demonstrate the contribution PWID can make to society and the development of the nation, for example by showing role models of PWID who have made a meaningful contribution to society. Involvement of religious leaders in educating the public about intellectual disability issues. Support PWID in training and education Positive portrayal of intellectual disability at grass root level through campaigns and advocacy
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FURTHER RESEARCH
This report has highlighted a number of areas in which more research would be beneficial. Research is urgently needed to identify the most effective ways of tackling stigma, discrimination and exclusion across a range of contexts:
System Health Care Education Social Life Employment The legal framework relating to PWID can also be explored.
33
REFERENCES
Agbenyega, J. (2003). The power of labeling discourse in the construction of disability in Ghana. Retrieved April 15, 2011, from http://www.aare.edu.au/03pap/agb03245.pdf American Association on Intellectual and Developmental Disabilities. (2011). Definition of Intellectual Disability. Retrieved May 26, 2011, from AAIDD website: http://www.aamr.org/content_100.cfm?navID=21 American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders. Fourth Edition. Text Revision: DSM-IV-TR, (4th ed.). Washington D.C., American Psychiatric Association American Psychological Association. (2001). Publication Manual of the American Psychological Association. Washington: APA Anthony, J. H., 2009, Background paper prepared for the Education for All Global Monitoring Report 2010. Reaching the marginalized, Access to Education for Students with Autism in Ghana: Implications for EFA Bhanushali, K. (2007). Changing Face of Disability Movement: From Charity to Empowerment. Ahmedabad: Mahatma Gandhi Labour Institute. Deal, M. (2006). Attitudes of disabled people towards other disabled people and impairment groups. London: City University. Eide, A. & Loeb, M. (2005). Data and Statistics on Disability in Developing Countries: Executive Summary, Disability Knowledge & Research Programme, 3. Ingstad, B. (31 March). Fact Sheet on Poverty and Disability. Inclusion International, www.inclusioninternational.org/site uploadsA1223821811255866183.pdf GES (2005), Special Educational Needs Policy Framework GFD/NCPD. (2010). Guidelines for the Disbursement and Management of the District Assembly Common Fund for Persons with Disability. Retrieved May 19, 2011, from Ghana Federation of the Disabled Website: www.gfdgh.org/GUIDELINES%20on%20Common%20Fu nd.pdf Ghana Center for Democratic Development. (2006). The Disability Law, Popular version. Accra. Ghana Education Service. (2003). Increasing Access to Quality Basic Education for Children with Special Needs: Special Education Project with VSO, Accra: GES. Ghana Federation of the Disabled. (2008a). The Ghana Disability Law [ACT 715]. Retrieved May 19, 2011, from Ghana Federation of the Disabled Website:www.gfdgh.org/GHANA%20DISABILITY%20A CT.pdf Ghana Federation of the Disabled. (2008b). Contextual Analysis of the Disability Situation in Ghana. Retrieved May 19, 2011, from Ghana Federation of the Disabled Website: www.gfdgh.org/Context%20analysis.pdf Ghana Federation of the Disabled. (2009). Strengthening the Disability Movement in Ghana Project. Retrieved May 19, 2011, from Ghana Federation of the Disabled Website: www.gfdgh.org/PILOT%20SURVEY%20REPORT%20BIRIM,%20HO,%20MANYA.pdf Ghanadistricts. (2006a). Know more about Ghana. Retrieved May 10, 2011, from Ghanadistricts: http://www.ghanadistricts.com/home/?_=42 Ghanadistricts. (2006b). List of all MMDAs in Ghana. Retrieved May 10, 2011, from Ghanadistricts: http://www.ghanadistricts.com/home/?_=27 Government of Ghana. Growth and Poverty Reduction Strategy (GPRS II) - (2006-2009). Jrgensen, P. (2009). Initiatives supported by Danish organisations regarding persons with disabilities in Ghana. Accra. Lewis, A. & Norwich, B. (2005). Special Teaching for Special Children?: Pedagogies for Inclusion. Maidenhead, Open University Press. Masood, A. F.,Turner, L. A. & Baxter, A., (2007). Causal Attributions and Parental Attitudes toward Children with Disabilities in the United States and Pakistan. Exceptional Children, 73, 4, 475-87.
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References
Miles, S. (2000). Overcoming Resource Barriers: the Challenge of Implementing Inclusive Education in Rural Areas. Republic of Ghana, Ministry of Employment and Social Welfare. (2000). National Disability Policy Document. Republic of Ghana. (2003). Education Strategic Plan 20032015. Ministry of Education. Republic of Ghana. (2004). The Development of Education. National Report of Ghana: The basic education division of Ghana Education Services. Accra: Assembly Press. Slikker, J. (2009). Attitudes towards Persons with Disability in Ghana of Persons with Disability in Ghana. Retrieved May 19, 2011, from Ghana Federation of the Disabled Website: www.gfdgh.org/VSO%20Attitudes%20towards%20PWDS %20in%20Ghana.pdf TV3 News: Ghana statistical Service release of 2010 provisional census results. Retrieved May 5, 2011 from You Tube Website: www.youtube.com/watch?v=t3oD5QOerYM Twumasi A.P. (2001). Social research in rural communities, Accra: Ghana Universities Press. UN (2006). Convention on the rights of persons with disabilities. UN (2006). Convention on the rights of persons with disabilities: Optional Protocol. UNDP (2007). Ghana Human Development Report 2007: Towards a More Inclusive Society. Ghana. United Nations (UN). (1993). Standard Rules on the Equalization of Opportunities for Persons with Disabilities. 85th plenary meeting, 20 December 1993. Voluntary Service Overseas Ghana. (2007). Concept Note: Public Perceptions on persons with Disability - Survey of VSOs four focus regions in Ghana: Volta, Eastern, Central & Greater Accra Regions.
Voluntary Service Overseas. (2001). VSO Position Paper. Including disabled people; Disability, VSO and development. London. Voluntary Service Overseas. (2006). A handbook on mainstreaming disability. London.
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Annex 1
Interview Guide Parents / Caretakers of PWID
Interviewer: Date of Interview: Child/Relation's Name: Region: Residence: Village Town Language: Ga English Twi Ewe Hausa Other: Sex: Male Female Religion: Christian Muslim Other
PART A
a) What is your age? < 16 years 16-30 years 31-45 years 46-60 years and above 61 years b) What is your marital status? Single/Never been married Married Separated/Divorced Widowed c) What is the highest level of education you have attained? None School graduate Primary Junior High School graduate Senior High School graduate Training College Teacher or Polytechnic University than university Higher d) What is your current employment situation? Student Unemployed Employed Own business Retired
36
Interview Guide-Parents / Caretakers of PWID
PART B
1. Have you heard of the term intellectual disability / mentally handicapped? Yes No Don't know 2. How would you describe Persons with intellectual disability / mentally handicapped? .......................................................................................................................................................... 3. What types of intellectual disability do you know? Down Syndrome Autism specify: ............................................ Others, 4. What do you think is / are the cause /causes of intellectual disability? reasons / diseases Medical Accident cause / juju Spiritual error Medical specify: ............................................. Others, 5. Do you think people with such disabilities are responsible themselves for their disability? Why
Yes, .................................................................................................................................................... No, ..................................................................................................................................................... Don't know 6. Do you think intellectual disability can be cured? How or why ? Yes, by............................................................................................................................................... No, because....................................................................................................................................... 7. What is the relationship between you and the person with intellectual disability? Child Spouse/partner Sibling of immediate family Member Friend Neighbour Colleague/work contact Employer 8. How old was your child / relation when you first suspected the impairment? than 2 years Younger 2-4 years 5-7 years 8-10 years 10 years Older than
37
9. What were the first signs that something was unusual about your child? Hearing Physical Behaviour,............................................. Other,.................................................... 10. Who did you first consult? Doctor leader Spiritual Priest Family Member Community Leader Other,.................................................. 11. Have you sought for treatment? No, because............................................ Yes, ........................................................ 12. Which of the impairments is your child / relation diagnosed of? Down Syndrome Autism specify: ...................................... Others, 13. How often do you have close contact (one on one) with your child / relation? Daily Weekly once a month At least Once every three months than once every three months Less often 14. Does your child do small house hold tasks (sweeping, washing dishes, etc)? No, because............................................ Yes, ........................................................ 15. If there's a family festivity taking place (eg funeral), does your child attend? No, because............................................ Yes, ........................................................ 16. If the family is preparing a family festivity, does the child have a role in the preparation like other children in the family? No, because............................................ Yes, ........................................................ 17. If a mother of the child, did you notice any change in your relationship with the father of the child? Yes, significant Yes, slightly Don't know Not at all Please explain:....................................................................................................................................
38
18. Did you notice any change in your relationship with other family members? Yes, significant Yes, slightly Don't know Not at all Please explain:.................................................................................................................................... 19. Did you notice any change in your relationship with the neighbours and community? Yes, significant Yes, slightly Don't know Not at all Please explain:........................................................................................................................................... 20. How do you personally feel about persons with intellectual disability? Fear Pity Uncomfortable Sadness Compassion ignore them Avoid or them / insult them Laugh at Other, specify: ...................................................................... 21. Has this changed since your child was born/since you met the 'relation'? Yes, .................................................................................................................................................... No, ..................................................................................................................................................... 22. In general, to what extent do you feel that your child / relation is included in society. Would you say they are? Fully included included Somewhat included Not at all on level of mildness of the intellectual disability Depends 23. What do you think is the reason why your child / relation is not fully included in society? .....................................................................................................................................................................
24. How difficult do you believe it is for your child / relation to: a. Get employment? Very difficult difficult Difficult Somewhat Not difficult Don't know b.Get good education? Very difficult difficult Difficult Somewhat Not difficult Don't know c. Get good health care? Very difficult difficult Difficult Somewhat Not difficult Don't know
39
d. Have a social life? Very difficult difficult Difficult Somewhat Not difficult e. Be financially independent from others? Very difficult difficult Difficult Somewhat Not difficult f. Get married? Very difficult difficult Difficult Somewhat Not difficult g. Participate in decision-making in the family and community? Very difficult difficult Difficult Somewhat Not difficult h. Be an active member of a church? Very difficult difficult Difficult Somewhat Not difficult
Don't know Don't know Don't know Don't know Don't know
25. Do you think persons with intellectual disability are discriminated against and to what extent? Yes, often Yes, sometimes at all No, not Don't know 26. In your opinion, what is / are the cause(s) of the discrimination? Fear Ignorance stereotyping Stigma / Other, ................................................................ 27. Is there something that you think can be done to stop the discrimination towards your child / relation? Yes, ....................................... No, ........................................ Don't know 28. How do you think children with an intellectual disability should be educated? schools In regular schools In special No education needed Why:.................................................................................................................................................... 29. How comfortable would you feel if persons with intellectual disabilities were your next door neighbour: Very Uncomfortable Slightly uncomfortable Comfortable Don't know
30. What do you think can be done for persons with intellectual disabilities to improve their inclusion in society by: a. Government education for PWID Improve Implementation of Law people on ID Educate teachers Educate Other,..... Nothing
40
b. Parents /family of persons with intellectual disability Stand up for their rights Show pride of child/Stop hiding children Advocate/Talk Push government children Support Other Nothing c. Media Educate resources Seek right Discuss/publish information Advocate Other Nothing d. Persons with intellectual disability themselves Accept disability Socialise yourself/Advocate Speak for Other Nothing e. NGOs of government Fill gaps Other Nothing 31. Are you aware of any legislation or law for people with disabilities? Q32-33) Yes (go to No 32. What legislation or law can you name? ....................................................................................................................................................................... 33. Can you shortly describe the contents of any of this legislation or law? ....................................................................................................................................................................... ....................................................................................................................................................................... ....................................................................................................................................................................... 34. What do you think are the capacity/training/support needs of organisations or parents groups working to promote the rights and needs of persons with intellectual disability ....................................................................................................................................................................... ....................................................................................................................................................................... ....................................................................................................................................................................... .......................................................................................................................................................................
41
PART C
To what extent do you agree or disagree with the following statements? 1 = Agree, 2 = Neither agree nor disagree, 3 = Disagree
I. II. III. IV. V. VI. VII. VIII. IX. X. XI. XII. XIII. XIV. XV. XVI.
My child/relation is treated fairly in Ghana My child/relation should live in special institutions My child/relation should stay at home My child/relation should be able to have children My child/relation is well integrated into society My child/relation should participate like everyone else in social activities My child/relation is discriminated in Ghana My child/relation should be kept away from other children in school My child/relation should be able to get married My child/relation should study in regular schools I /The family is blameable for my childs disability It is okay with me if a person with an intellectual disability was my next door neighbour My child/relation should be kept apart from the rest of the society People should avoid person with intellectual disability because they can transmit the disability to other people My child/relation should have the right to vote in political elections when he/she turns 18 My child/relation is less likely to be hired for a job than those with other form of disabilities or without disabilities, even if they are equally qualified
1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2
3 3 3 3 3 3 3 3 3 3 3 3 3 3 3 3
42
Annex 2
Interview Guide Independent Leaders / Specialists

Date of Interview: Telephone: Town:
Interviewer: Interviewees Name: Region: Job/Function:
1. Have you heard of the term intellectual disability / mentally handicapped? Yes No Don't know 2. How would you describe Persons with intellectual disability / mentally handicapped?
.......................................................................................................................................................... 3. What types of intellectual disability do you know? Down Syndrome Autism Others, specify: ............................................ 4. What do you think is / are the cause /causes of intellectual disability? reasons/diseases Medical Accident cause /juju Spiritual error Medical Others, specify: ............................................. 5. Do you think people with such disability are responsible themselves for their disability? Why?
Yes, .................................................................................................................................................... No, ..................................................................................................................................................... Don't know 6. Do you think intellectual disability can be cured? How or why ? Yes, by............................................................................................................................................... No, because....................................................................................................................................... 7. How do you personally feel about persons with intellectual disability? Fear Pity
Uncomfortable Sadness Compassion
43
Interview Guide-Independent Leaders / Specialists
ignore them Avoid or at them / insult them Laugh specify ................... Other,
8. How do you personally feel about family members of persons with intellectual disability? .......................................................................................................................................... 9. In general, to what extent do you feel that persons with intellectual disability are included in society, in comparison with people without other disabilities? Would you say they are: Fully included included Somewhat included Not at all 10. What do you think is the reason why persons with intellectual disability are not fully included in society? ........................................................................................................................................................ 11. How difficult do you believe it is for a person with an intellectual disability to: a.Get employment? Very difficult difficult Difficult Somewhat Not difficult Don't know b.Get good education? Very difficult difficult Difficult Somewhat Not difficult Don't know c. Get good health care? Very difficult difficult Difficult Somewhat Not difficult Don't know d. Have a social life? Very difficult difficult Difficult Somewhat Not difficult Don't know e.Be financially independent from others? Very difficult difficult Difficult Somewhat Not difficult Don't know f. Get married? Very difficult difficult Difficult Somewhat Not difficult Don't know g. Participate in decision-making in the community? Very difficult difficult Difficult Somewhat Not difficult Don't know h. Be an active member of a church? Very difficult difficult Difficult Somewhat Not difficult Don't know 12. Do you think persons with intellectual disability are discriminated against and to what extent? Yes, often Yes, sometimes all No, not at Don't know
44
13. In your opinion, what is / are the cause(s) of the discrimination? Fear Ignorance stereotyping Stigma / Other, ................................................................ 14. Is there something that can be done to stop the discrimination towards persons with intellectual disability? Yes, ..................................................................................................................................... No Don't know 15. How do you think PWID should be educated? No education needed schools In regular schools In special 16. How comfortable would you feel if persons with intellectual disabilities were living in your house / next door neighbour: Very Uncomfortable uncomfortable Slightly Comfortable Don't know 17. What do you think can be done for persons with intellectual disability to improve their inclusion in society by: a. Government
Improve education for PWID Implementation of Law Educate people on ID Educate teachers Other,.......................... Nothing b. Parents /family of persons with intellectual disability Stand up for their rights Show pride of child/Stop hiding children Advocate/Talk Push government Support children Other Nothing
45
c. Media Educate right resources Seek Discuss/publish information Advocate Other Nothing d. Persons with intellectual disability themselves disability Accept Socialise for yourself/Advocate Speak Other Nothing e. NGOs Fill gaps of government Other Nothing 18. What do you think are the capacity/training/support needs of organisations or parents groups working to promote the rights and needs of persons with intellectual disability ................................................................................................................................................................................................ ................................................................................................................................................................................................ ................................................................................................................................................................................................ ................................................................................................................................................................................................ .
46
Interview - Guide Independent Leaders / Specialists
PART B
To what extent do you agree or disagree with the following statements? 1 = Agree, 2 = Neither agree nor disagree, 3 = Disagree
I. II. III. IV. V. VI. VII. VIII. IX. X. XI. XII. XIII. XIV. XV. XVI. XVII.
Persons with intellectual disability are treated fairly in Ghana Persons with intellectual disability should live in special institutions Persons with intellectual disability should stay at home Persons with intellectual disability should be able to have children Persons with intellectual disability are well integrated into society Persons with intellectual disability should participate like everyone else in social activities Persons with intellectual disability are blameable for their disability Persons with intellectual disability are discriminated in Ghana Children with intellectual disability should be kept away from other children in school A person with an intellectual disability should be able to get married Children with intellectual disability should study in regular schools I am happy to be associated with persons with intellectual disability It is okay with me if a person with an intellectual disability was my next door neighbour Persons with intellectual disability should be kept apart from the rest of the society People should avoid persons with intellectual disability because they can transmit the disability to other people Persons with intellectual disability should have the right to vote in political elections Persons with intellectual disability are less likely to be hired for a job than those with other form of disabilities or without disabilities, even if they are equally qualified
1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1 1
2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2 2
3 3 3 3 3 3 3 3 3 3 3 3 3 3 3 3 3
47
Annex 3
List of Respondents-Independent Leaders / Specialists

FUNCTION Consultant, Special Needs Education National Inclusive Education Coordinator, GES Educational Director, Autism Awareness, Care & Training Executive Director, Centre for Employment of PWDs Executive Director, Ghana Society for the Physically Disabled Executive Director, Echoeing Hills Social Worker, Echoing Hills Deputy Regional Imam, Ghana Muslim Mission Secretary, Council of Ghana Muslim Mission Head, National Assessment and Resource Centre Head, Plastic Surgery, Korle-Bu Teaching Hospital Acting Executive Secretary, National Council on PWDs Executive Director, Ghana Federation of the Disabled Chief, Adabraka Atukpai Chief, Osu Intellectual Disability Specialist, Korle-Bu Teaching Hospital Assessor, National Assessment & Resource Centre Speech & Language Therapist Special Educator, Madina Cluster 1 EID Unit, Accra Special Educator, Madina Cluster 1 EID Unit, Accra Secretary, Traditional Council of Klefe District Director, Ghana Education Service, Ho Municipal Special Education Officer, Ho Special Educator, Anglican Basic School EID Unit, Ho Special Educator, Anglican Basic School EID Unit, Ho Special Educator, Anglican Basic School EID Unit, Ho Special Educator, Anglican Basic School EID Unit, Ho Teacher, Helekpe EP Primary School National Service Person, Helekpe EP Primary School Head Teacher, Helekpe EP Primary School Ghana Federation of the Disabled, Ho Paramount Chief, Ho Traditional Area. Programme Head, Community Care, Ho Diocesan Administrator, Catholic Church, Bolga Assembly Woman, Ho Business man, Ho Community Mobilizer, Ho Cathedral Administrator, Catholic Church, Bolga Executive Director, Centre for Child Development, Bolga Head Teacher, Balobia L/A Primary EID Unit, Navrongo Social Worker, Bolgatanga Social Worker, Bolgatanga Social Worker, Bolgatanga Social Worker, Bolgatanga
RESPONDENT Mawuli Tetteh Mohammed Bukari Mawusi Adiku Alexander Tetteh Charles Appiagyei Lawrence Lamina Philip Okai Darlas Sheikh Ahmed Adjei Adjetey Suleiman Nettey Grace Preko Dr. Albert Paintsil Duut Bonchel Abdulai Rita Kyeremaa Nii Tetteh Adjabeng I Nii Okwei Kinka Dowuona VI Dr. Ebenezer Badoe Rev. Sister Catherine Gah Nana Akua Owusu Doreen Araba Obu Mercy Asiedu Godfred Nudey George Gura Japhet Buamah Elizabeth Adu Mawusi Awuni John Duaye Esinam Arku Kudior Shine Emily Chekpa Vincent Bansah Frank Bissi Togbe Kwafai Emelia Akorfa Very Rev. Mgsr. Thomas Anamoo Joycelyn Akorfa Bradford Tay David Aziagu Very Rev. Fr. Moses Akebule Felix Frederick Amega-Etego Edward Alira Hilda Asora Paulina Agomsitiba Grace Billah Mary Zoesioni
48
List of Respondents-Independent Leaders / Specialists
RESPONDENT Sabogu Ubald Achimpua Roger David Azupago Mercy Pwakra Stephany Asido Timothy Allou Paul Rewom Mary Magdalene Ayoma Francisca Ateere Ebenezer Kye-Mensah Raymond Ategbi Okrofu Mark Nabiah Akagre Johakim Agnes Attagabe Ben Yindol Godwin Gyasi Amoah-Buanin Pastor James Anane-Domeh Nana Obiri Yeboah Kokorko Alfred Armstrong Linus Baaba Christiana Akum Yeri Rafae K. Lantah Henrietta Nyarko Martha Tiwaa Prosper Y. Dombul Thomas Patrick Otaah David Tettey Kofi Anokye Owusu - Darko
FUNCTION Education Coordinator, VSO, Bolga Teacher, Bolga Director, Meta Foundation Municipal Social Welfare Officer, Bolgatanga Special Educator, Balobia L/A Primary EID Unit, Navrongo Special Education Coordinator, GES, Bolga Special Educator, St. Charles Primary EID Unit, Bolgatanga Head Teacher, St. Charles Primary EID Unit, Bolgatanga Deputy Director-Finance, GES, Bolgatanga Capacity Building Specialist, CHF International Country Coordinator, Co2balance Ltd. Deputy Director-Finance, GES, Bolgatanga Deputy Director, Ghana Education Service, Bolgatanga Director, Ghana Education Service, Bolgatanga Deputy Director-Human Resources, GES, Bolgatanga Deputy Director, Mission of Hope for Society Foundation Headmaster, St. Pauls Primary School, Kintampo Pastor, Seventh Day Adventist Church, Techiman Chief, Bamim, Techiman Special Educator, School for the Deaf, Bechem Special Educator, School for the Deaf, Bechem Special Education Needs Coordinator, Sunyani Headmaster, St. Pauls R/C Basic EID Unit, Techiman Administrator, Hanukkah Childrens Home, Techiman Special Teacher, St. Pauls R/C Basic EID Unit, Techiman Teacher, St. Pauls R/C Basic EID Unit, Techiman Teacher, St. Pauls R/C Basic EID Unit, Techiman Deputy Director, SPED, Accra Officer, SPED, Accra Head, Consumer Banking Operations, Merchant Bank
49
50
Annex 4
Data On Basic School Enrolment For Persons With Intellectual Disability
No.
MALE FEMALE TOTAL
SCHOOLS
YEAR ESTABLISHED
Enrolment as at 31st July 2011

NO. OF TEACHER(S)
Special Schools for Intellectual Disability 1970 1977 1977 1980 1985 1995 1997 1999 2000 2004 2005 2005 2010 1972 1998 38 15 68 91 24 24 45 27 71 18 92 29 79 132 54 57 15 7 53 56 16 29 49 13 41 7 43 5 87 63 150 186 136 53 22 121 147 40 63 94 40 112 25 135 34 20 25 32 11 5 6 9 15 7 5 12 5 11 4
Dzorwulu Special School, Accra
Garden City Special School, Kumasi
Twin City Special School, Sekondi
Castle Road Special School, Accra
School for the Deaf EID Unit, Koforidua
Three Kings Special School, Battor
Shalom Special School, Nkoranza
Community Inclusive Special School, Kpandu
School for the Deaf (EMH Unit), Wa
10
Yumba Special School, Tamale
11
Community Special Vocational School, Deduako-Kumasi
12
Gbi Kledzo Special School, Hohoe
13
Catholic Special Vocational School, Fijai-Takoradi
Private Schools for Intellectual Disability
New Horizon Special School, Accra
Autism Awareness Care and Training Center, Accra
No.
MALE FEMALE TOTAL NO. OF TEACHER(S)
SCHOOLS
YEAR ESTABLISHED Enrolment as at 31st July 2011
Unit Schools for Intellectual Disability 2003 44 15 20 29 2 18 16 6 16 2 6 32 16 9 2007 2007 2007 2007 2007 2007 2007 2008 2008 2008 27 15 16 15 18 4 12 6 4 14 8 17 14 8 18 12 10 5 5 2 10 7 7 4 13 35 9 14 49 30 17 45 27 26 20 23 6 22 13 11 18 2004 2005 2005 2006 2006 2006 2006 2006 2006 2006 2006 2006 2007 7 19 7 8 8 14 4 0 2 14 15 9 11 8 7 23 21 4 2 2 3 1 2 1 2 3 3 1 3 3 2 3 4 5 4 4 1 2 2 3 3
Rev. Fr. John Basic School EID Unit, Winneba
Madina Cluster 1 EID Unit, Accra
GCD Basic School EID Unit, Akwatia
St. Charles Primary EID Unit, Bolgatanga
Kasseh DC Primary EID Unit, Ada
Archangel R/C Basic EID Unit, Walewale-Suguru
Presby Basic School EID Unit, Agona Swedru
Yilo State Basic School EID Unit, Somanya
10
11
12
13
14
15
16
17
18
19
20
21
22
23
Special School List
51
24
Nana Akuamoah A Basic EID Unit, Nkawkaw St. Joseph Basic School EID Unit, Obuasi Methodist Basic School EID Unit, Goaso Methodist Basic EID Unit, Aboom-Cape Coast Balobia Integrated Primary School, Navrongo Methodist Basic EID Unit, Adukrom Methodist Basic School EID Unit, Effiduase Nyamaa Basic School EID Unit, Sunyani Dansoman 5 EID Unit, Accra Anglican Basic School EID Unit, Ho Chicago Basic School EID Unit, Keta Roman Catholic Primary EID Unit, Nadowli Rev. Hooper Basic School EID Unit, Tarkwa SDA Basic School EID Unit, Dakpema-Tamale OPASS Basic School EID Unit, Kukurantumi St. Pauls R/C Basic EID Unit, Techiman
52
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Report On The Level of Stigmatisation, Discrimination and Exclusion of Persons With Intellectual Disability and Their Families in Ghana

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REPORT

Profile of Ghana..........................................................................................................................1 The Disability Situation in Ghana............................................................................................2

RESEARCH QUESTION AND OBJECTIVES ............................................................................................ 3 DEFINITIONS AND LITERATURE............................................................................................................. 4

6.1 6.2 6.3 6.4 6.5

RECOMMENDATIONS: Opening New Doors to PWID and their Families ...................................

8.1 8.2 8.3 8.4

RESEARCH QUESTION AND OBJECTIVES

DEFINITIONS AND LITERATURE

Definitions and Literature

Sample size of the research per region

Figure 1: Distribution of interviewees per region

Independent Leaders and Specialists

8 See Annex 3 for a list of the individuals of this sampled group

KEY FINDINGS: A grim picture with glimmers of hope

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

Younger than 2 2-4 years 5-7 years 8-10 years

Figure 3: Age of children at diagnoses

Key Findings: A Grim Picture With Glimmers of Hope

Marital status of parents/care takers

Figure 4: Marital Status of Parents

Key Findings: A Grim Picture With Glimmers of Hope

Medical reasons / diseases

Accident Spiritual cause / juju Medical error Other

Key Findings: A Grim Picture With Glimmers of Hope

Do you think intellectual disabilities can be cured

Yes No Dont know

Key Findings: A Grim Picture With Glimmers of Hope

Key Findings: A Grim Picture With Glimmers of Hope

How do you think PWID should be educated

Regular school Special school No education needed

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

Key Findings: A Grim Picture With Glimmers of Hope

Key Findings: A Grim Picture With Glimmers of Hope

How difficult is it to get good health care for PWID

Figure 9: Difficulty of getting good health care support for PWID

Interview with a Doctor at the Korle Bu Teaching Hospital

Key Findings: A Grim Picture With Glimmers of Hope

Figure 10: The side view of the NARC

Figure 11: The back view of the NARC

Key Findings: A Grim Picture With Glimmers of Hope

How difficult do you believe it is for a PWID to get employment

Very difficult Difficult Somewhat difficult Not difficult Dont know

Figure 12: Difficulty of getting employment for PWID

Key Findings: A Grim Picture With Glimmers of Hope

PWID are less likely to be hired for job then others

Figure 13: Parents perception of discrimination in employment

Key Findings: A Grim Picture With Glimmers of Hope

Figure 14: Difficulty of getting marriage for PWID

Agree Neither agree nor disagree disagree

Figure 15: Perception on whether PWID should be able to get married

Key Findings: A Grim Picture With Glimmers of Hope

Social Life & Participation in the Family and Community

Key Findings: A Grim Picture With Glimmers of Hope

How difficult is it for PWID to be an active member of a church or mosque

Somewhat difficult Not difficult

Figure 16: Difficulty of participation in Church or Mosque

Key Findings: A Grim Picture With Glimmers of Hope

Do you think PWID are discriminated against in Ghana