Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their families in Ghana
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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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Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their families in Ghana

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

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Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their families in Ghana Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their families in Ghana Document Transcript

  • REPORTON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL DISABILITY AND THEIR FAMILIES IN GHANA JULY 2011
  • REPORTON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL DISABILITY AND THEIR FAMILIES IN GHANA JULY 2011
  • PROFILEI 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 withintellectual disability in Ghana.Intervention AreasThe 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 familiesResearch  and promoting research that will improve the lives of persons with intellectual disability Identifying and their familiesEducation  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 choicesAdvocacy  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 childrens rightsFor more information about Inclusion Ghana, its work, activities and membership,contact:Inclusion Ghana#24 Feo Eyeo Link, North Industrial AreaP.O. Box GP 20950Accra-GhanaTelephone: +233 (0) 30 224 3291 / (0) 20 815 1523Email: info@inclusion-ghana.org inclusionghana@yahoo.comWebsite: http://inclusion-ghana.org i
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  • FOREWORDD 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 ofintellectual disability. For this reason Inclusion Ghana conducted this study to measure the level ofstigmatization, discrimination and exclusion of persons with intellectual disability (PWID) in Ghana witha view to advocating for their rights and explore areas in intellectual disability in which more researchwould be beneficial.Intellectual disability is the most stigmatized disability among several disabilities in Ghana. More thanother types of disabilities; strong social, religious and cultural stigma are associated with it. It is estimatedthat PWID constitute the third (3rd) largest category of Persons with Disabilities in Ghana (GhanaNational Disability Policy Document, 2000). In Ghanaian communities, PWID are perceived to bedangerous to themselves and others. Therefore they are often excluded from mainstream society anddenied any life opportunity due to a belief that they are dangerous and fully incapable of performingintellectual activities.This report echoes the challenges Persons with Intellectual Disability and their families go through on adaily basis. The report also highlights various recommendations made by parents and independentleaders on the way forward. The Special Education Division of the Ghana Education Service, with themandate of providing equitable and quality educational opportunities for all children with special needsand 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 materialfor research, advocacy and other development-oriented policy actions on behalf of persons withintellectual disability. This report may also serve as material for guiding policy formulation and makingother regulatory decisions for the future development and integration of PWID into the community.Thomas Patrick OtaahDeputy Director (formerly Head of Unit for PWID)Special Education DivisionGhana Education Service iii
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  • ACKNOWLEDGEMENTSM 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 highlyapplauded. We are also indebted to the Board of Inclusion Ghana for their technical input and advicethroughout the study.Inclusion Ghana wishes to express profound gratitude to DANIDA and LEV National Association fortheir financial and administrative support. We also thank VSO for their support by allocating anInternational 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 personnelof all of our member organisations who helped us to identify some parents of persons with intellectualdisability and independent leaders in the selected study areas namely Upper East, Greater Accra, Voltaand the Brong Ahafo Region. The list of independent leaders who were interviewed can be found inannex 3.Last but not least, thanks goes to parents and families of persons with intellectual disability who took timeto talk courageously and share their sometimes emotional experiences with us. Because of the stigma wesensed during the interviews, it was decided to do their interviews anonymously. It is only through theirtestimonies and accounts that we can begin to understand the level of stigmatization, discrimination andexclusion of their children. It is to them, persons with intellectual disability that this study is dedicated.Compiled and Edited by:Auberon Jeleel OdoomKrista van Weelden v
  • ACRONYMSCDC Center for Disease Control and PreventionCDD Centre for Democratic DevelopmentCWID Children With Intellectual DisabilityDANIDA Danish International Development AgencyESP Education Strategic PlanEFA Education for All AgendaFAS Fetal Alcohol SyndromeFCUBE Free Compulsory Universal Basic EducationGDP Gross Domestic ProductGES Ghana Education ServiceGFD Ghana Federation of the DisabledGHS Ghana Health ServiceGoG Government of GhanaGPRS Ghana Poverty Reduction StrategyGSS Ghana Statistical ServiceID Intellectual DisabilityIE Inclusive EducationIEP Individualised Education PlanMOE Ministry of EducationMOH Ministry of HealthNARC National Assessment and Resource CentreNCPD National Council on Persons with DisabilityNGO Non-Governmental OrganizationNHIS National Health Insurance SchemeOPWD Organisations of Persons With DisabilityPWD Persons With DisabilityPWID Persons With Intellectual DisabilitySEN Special Educational NeedsSPED Special Education Division of the Ghana Education ServiceUN United NationsUNESCO United Nations Educational, Scientific and Cultural OrganizationVSO Voluntary Services OverseasWHO World Health Organisation vi
  • 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………………………………………………………………………...........……………….......x1 INTRODUCTION ............................................................................................................................................ 1 1.1 Profile of Ghana..........................................................................................................................1 1.2 The Disability Situation in Ghana............................................................................................22 RESEARCH QUESTION AND OBJECTIVES ............................................................................................ 33 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 ..............................................................................................54 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 .........................................................................................................................85 KEY FINDINGS: A grim picture with glimmers of hope ....................................................................... ..9 5.1 Profile of Parents Respondents and their Children...............................................................9 5.2 Awareness of Intellectual Disability Issues .......................................................................... 10 5.2.1 Causes of Intellectual Disability .........................................................................................10 5.2.2 Treatment or Cure of Intellectual Disability ...................................................................... 11 5.3 Inclusion of Persons with Intellectual Disability in Ghanaian Society ............................12 5.3.1 Inclusive Education / Special Education ............................................................................ 12 5.3.2 The Health Care System...................................................................................................... 15 5.3.3 Assessment of Persons With Intellectual Disability .........................................................16 5.3.4 Employment ........................................................................................................................18 vii
  • 5.3.5 Marriage and Family Life ................................................................................................... 19 5.3.6 Social Life & Participation in the Family and Community................................................ 21 5.3.7 Participation in Church and Mosque activities .................................................................. 21 5.4 Discrimination and Stigmatisation of PWIDs in Ghana..................................................... 22 5.5 Existence and Implementation of Disability Policies & Strategies targeted at PWIDs .. 236 CHANGING ATTITUDES ........................................................................................................................... 26 6.1 The Role of Government ......................................................................................................... 26 6.2 The Role of the Media.............................................................................................................. 27 6.3 The Role of Parents .................................................................................................................. 28 6.4 The Role of PWID themselves ................................................................................................ 28 6.5 The Role of NGOs .................................................................................................................... 297 CONCLUSION ............................................................................................................................................... 308 RECOMMENDATIONS: Opening New Doors to PWID and their Families ................................... 31 8.1 Meeting the Needs of Parents and Families of PWID ........................................................ 31 8.2 Implementation and Improvement on Government Policies ............................................ 31 8.3 Media Intervention .................................................................................................................. 32 8.4 The Community is key ............................................................................................................ 329 FURTHER RESEARCH ................................................................................................................................. 33REFERENCES .......................................................................................................................................................... 34LIST OF FIGURESFigure 1: Distribution of interviewees per region........................................................................................... 7Figure 2: Disabilities of Children …………………………………………………………………….……... 9Figure 3: Age of children at diagnoses……………………………………………………………….……... 9Figure 4: Marital Status of Parents………………………………………………………………………….. 10Figure 5: Causes of ID ………………………………………………………………………………………. 11Figure 6: Treatment or Cure of ID…………………………………………………………………….…….. 12Figure 7: Education of PWID ……………………………………………………………………….………. 14Figure 8: Difficulty of getting good education for PWID ………………………………………..………. 14Figure 9: Difficulty of getting good health care support for PWID..………………………….…………. 16Figure 10: The side view of the NARC……………………………….…………………………………….. 17Figure 11: The back view of the NARC………………….………………………………………….……… 17Figure 12: Difficulty of getting employment for PWID …………………………………………….……. 18Figure 13: Parents perception of discrimination in employment............................................................... 19Figure 14: Difficulty of getting marriage for PWID ………………………………………………….…... 20Figure 15: Perception on whether PWID should be able to get married………………………….…… 20Figure 16: Difficulty of participation in Church or Mosque……………………………………….……... 22Figure 17: Perception of discrimination against PWID in Ghana ......……………………………….…. 23Figure 18: Level of awareness of any legislation for PWID ……………………………………..………. 24Figure 19: Improve Inclusion by Government……………………………………………………..………. 26Figure 20: Improve Inclusion by Media……………………………………………………………..…….... 27Figure 21: Improve Inclusion by Parents…………………………………………………………..……….. 28Figure 22: Improve Inclusion by PWID themselves…………………………………………….………... 29Figure 23: Improve Inclusion by NGOs…………………………………………………………….………. 29 viii
  • LIST OF ANNEXESAnnex 1: Questionnaire - Parents/Caretakers…………………………………………………………36-42Annex 2: Questionnaire - Independent Leaders/ Specialists………………………………...………43-47Annex 3. List of Respondents – Independent Leaders / Specialists………………………...………48-49Annex 4: List of Special Schools and Integrated Schools……………………………………………..50-51 ix
  • EXECUTIVE SUMMARYI 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 thehardest 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 peoplecall them “Nsuoba”, meaning water children. There are many stories about children with intellectualdisabilities who are “given back to the water”. In Northern Ghana exists a widespread belief in “spirit children”. Itis believed that some children, known as spirits or “Kinkirigo” have been sent to bring harm to a family and arenot meant for this world. Following from this religious-cultural thinking about intellectual disability and thelack of initiatives from the government to improve inclusion of PWID in Ghana, they face several barriers andforms of stigmatization, discrimination and exclusion. Traditionally, more focus has been placed on findingout 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 allspheres of life.A lack of data in this area inspired Inclusion Ghana to do a baseline study in four regions in Ghana to measurethe level of stigmatization, discrimination and exclusion of PWID and their families. The study involvedparents/care takers of PWID, independent leaders and specialists in the field of Intellectual Disability. A totalnumber 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 actualdata that were measured, outcomes of observations we did and make recommendations to address particularareas of concern.In all the research sites, significant levels of stigmatization, discrimination and exclusion, both overt andcovert, were identified in education, employment, health care, and social life. Widespread and enduringchanges in social attitudes are required if we are to make headway against ID-related stigma, discriminationand exclusion. Bringing about such change requires mobilizing many different stakeholders, includingparents of PWID, friends and families; religious and traditional leaders, legal and civil rights groups, non-governmental and community-based organizations, the business community and workers organizations;doctors, politicians, nurses and health-care workers, teachers, youth leaders, women leaders and socialworkers, and the police. Additionally, links need to be made with broader struggles that address underlyingeconomic, social, cultural and political inequalities. If effective responses to ID-related stigma anddiscrimination are to be promoted, work has to be done simultaneously on several fronts: communication andeducation to encourage better understanding of ID; action and intervention to establish a more equitablepolicy context; and legal challenge, where necessary, to bring to account governments, employers, institutionsand individuals.We are hopeful that this report will contribute to further advocacy for the rights and needs of PWID and theirfamilies in Ghana and hope nobody will hesitate to use the information for any activity in this area. If you doso, we would appreciate a referral to this report and Inclusion Ghana. x
  • 1 INTRODUCTIONInclusion Ghana (IG), a member of Inclusion International, continuous obstacle to the inclusion of PWID in the society,is a network organisation founded in 2009, working to because within such a belief system it is difficult for anyreduce stigmatization and ensure full inclusion of all interaction to occur between the “abled people” andpersons with intellectual disability and their families by PWID. In many cases, PWID living on the street have beenadvocating for their rights and needs. rejected by their own families.One may ask is the mission statement of Inclusion Ghana A lack of data in this area inspired Inclusion Ghana to do arelevant to the Ghanaian society? Yes in Ghana, as baseline study in four regions in Ghana to measure theelsewhere in Africa, traditional beliefs, culture, and social level of stigmatization, discrimination and exclusion ofstatus have interacted and influenced peoples perception PWID and their families. This report describes the outcomeand attitude towards Persons with Intellectual Disability of the study conducted by Inclusion Ghana. We give an(PWID). Intellectual Disability is often perceived as a curse overview of actual data that was measured, outcomes ofor punishment for sins committed by parents of the observations we did and make recommendations toPWIDs. In the Ghanaian society, pregnancy and birth are address particular areas of concern. We are hopeful thathighly regarded as a blessing and are characterized with this report will contribute to further advocacy for the rightshigh expectations. There is no good reason a family can and needs of persons with intellectual disability and theirgive to explain why a child is born with an intellectual families in Ghana and hope nobody will hesitate to use thedisability except that the anger of the gods has been visited information for any activity in this area.on them. 1.1 Profile of GhanaPersons with Intellectual Disability or mental The Republic of Ghana is located on the Southern Coast ofretardation, as it is called amongst most Ghanaians, are West Africa. The GDP per capita of Ghana is US $ 1100the hardest hit victims of negative labeling when it comes (World Bank, 2011), and 40% of the adult population livesto Persons with Disabilities (PWDs). Two tribal groups, the on less than US $2 per day. Ghana was the first blackEwes and the Gas, refer to them as “Asotowo” (idiot or fool) African nation in the region to achieve independence fromand “Buluus” (reduced mental abilities) respectively. The a colonial power, in this instance Britain. Ghana has aAkans label persons with intellectual disabilities as “Nea current total population of 24, 223,4312 of which more thanwanyin agya nadwene ho” which means feeble minded, 37 % are under the age of 14 with a life expectancy of 57which are perceived as offensive and dehumanizing labels, years and a child mortality of 18/1000 (< 5 years).equated with insults. Persons with Down Syndrome inGhana are believed to be children given by the river gods, Ghanas population is concentrated along the coast and inand hence people call them “Nsuoba”, meaning water the principal cities of Accra and Kumasi. Ethnically, Ghanachildren. There are many stories about children with is divided into small groups speaking more than 50intellectual disability who are “given back to the water1”. In languages and dialects. Among the more importantNorthern Ghana exists a widespread belief in “spirit linguistic groups are the Akans, which include the Fantischildren”. It is believed that some children, known as along the coast and the Ashantis in the forest region northspirits or “Kinkirigo” have been sent to bring harm to a of the coast; the Guans, on the plains of the Volta River; thefamily and are not meant for this world. Ga- and Ewe-speaking peoples of the south and southeast; and the Moshie-Dagomba speaking tribes of the northernFollowing from this religious-cultural thinking about and upper regions. The official language is English,intellectual disability and the lack of initiatives from the however many of the poorest people are illiterate andgovernment to improve inclusion of PWID in Ghana, they therefore do not understand or use English, the officialface several barriers and forms of stigmatization, language. The different linguistic groups often have theirdiscrimination and exclusion. Traditionally, more focus specific beliefs and superstitions.has been placed on finding out and obviating the causes ofintellectual disability and less on improving the living Primary and junior high school education is tuition-freeconditions of PWID. This has resulted in the and mandatory. The Government of Ghanas support formarginalization of PWID and their exclusion from basic education is unequivocal. Article 39 of theenjoying equal opportunities in all spheres of life. constitution mandates the major tenets of the free,Superstition and the cultural belief system thus form a compulsory, universal basic education (FCUBE) initiative.1 Agbenyega, 20032 Tv3 News: Ghana Statistical Service (GSS) release of 2010 provisional census results 1
  • IntroductionLaunched in 1996, it is one of the most ambitious pre- PWID, there are often very limited vacancies and they aretertiary education programs in West Africa. Since 1986, located far away from rural communities. Besides thesepre-tertiary education in Ghana includes 6 years of facts, special schools are often not known by most of theprimary education, 3 years at the junior high school level, Ghanaian population including traditional and religiousand 3 years at the senior high school level. Successful leaders. There are only few private schools for PWID andcompletion of senior high school leads to admission the fees that parents have to pay for their children areeligibility at training colleges, universities and other relatively high. Most children with ID in rural areas andtertiary institutions. The workforce population is around often those in sub-urban areas do not receive any form of11.1 million, out of which 47.9% are into Agriculture and education at all.fishing; 16.2% into industry and transport; sales andclerical--19.3%; services--5.9%; professional--8.9%; others- The healthcare system does not cater for the specific needs-1.8%. of PWID and the number of specialists with knowledge in this field is very limited and mainly concentrated in the two biggest cities of Ghana, Accra and Kumasi. Although1.2 The Disability Situation in Ghana disability policies are existing on paper, theNo accurate national survey has been carried out to implementation is very limited and awareness of thedetermine the disability rate in the country. Although the Disability Law is low amongst society and the families of2010 population and housing census in Ghana formally PWID. Most NGOs working with PWID face challenges ininvolved questions about Persons with Disabilities, it was terms of lack of resources and qualified staff members,experienced that these questions were often left out in the which limits their ability to meet their objectives.interviews and data on the census therefore wont bereliable. The World Health Organisation (WHO) howeverestimates the disability rate of Ghana to be between 7 and10 per cent, which equates approximately 1.70 – 2.4 millionpeople in the country. In most developing countriesincluding Ghana, disabled persons constitute animpoverished marginalized group, characterized by lackof access to public health, education, and other socialservices that would ideally support and protect personswith disabilities. Economically as well as in social terms,disabled persons in developing countries are classifiedamong the poorest of the poor.Persons With Disabilities (PWDs) in Ghana are oftenregarded as unproductive and incapable of contributing ina positive way to society, and rather seen as constituting aneconomic 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 weaklyrepresented in civil society. It is estimated that Personswith Intellectual Disability constitute the 3rd largestcategory of Persons with Disabilities in Ghana (GhanaNational Disability Policy Document, 2000).PWID face many forms of exclusion in the society. Despitegovernment policy of inclusive education, many childrenwith ID are still excluded from any form of education.Although the government opened special schools for 2
  • 2 RESEARCH QUESTION AND OBJECTIVESAs the basis of the research the following research question was formulated: What are the attitudes of people in the Greater Accra, Volta, Upper East and Brong Ahafo regions in Ghana towards PWID and their families and what can be done to increase positive attitudes towards PWID and their families.In order to answer the research question, five objectives were established:  baseline information on the cultural and religious beliefs about PWID To gather and their families insight into how negative attitudes towards PWID result in social To gain exclusion of them and their families  baseline information about inclusion of PWID and their families from To gather the perspective of parents and that of independent representatives (priests, professionals, traditional leaders etc.)  baseline information about the level of implementation of the national To gather and international law and policies on the rights of PWID in Ghana  which factors can contribute to forming positive attitudes towards To examine PWID and their families. 3
  • 3 DEFINITIONS AND LITERATUREIn this chapter we will give some definitions to some of the 3.1.1 Down Syndromemain terms used in this report and also provide some Down Syndrome4 is a set of mental and physicalliterature on them as a background for the research. symptoms that result from having an extra copy of chromosome 21. It affects all races and economic levels3.1 Intellectual Disability equally. Approximately 1 in 800 to 1 in 1,000 babies areIntellectual Disability3 (ID) is characterized by significant born with the disorder. A child with Down Syndrome maylimitations both in intellectual functioning and in adaptive have eyes that slant upward and small ears that may foldbehaviour as expressed in conceptual, social and practical over a little at the top. The mouth may be small, making theadaptive skills. PWID experience difficulties in one or tongue appear large. The nose also may be small, with amore of the following areas: learning, communication, self flattened nasal bridge. Some babies with Down Syndrome have short necks and small hands with short fingers. Thecare, home living, social skills, community use, self child with Down Syndrome is often short and has unusualdirection, health and safety, leisure, and work. An looseness of the joints. Most children with Downintellectual disability may become apparent early in life or, Syndrome will have some, but not all of these features. Thein the case of people with a mild intellectual disability, may degree of intellectual disability varies widely from mild tonot be diagnosed until school age or later. This disability moderate to severe. There is no cure yet for Downoriginates before adulthood. An individual can be mildly Syndrome, nor can it be prevented. Scientists do not knowaffected to profoundly affected. There are varying causes why problems involving chromosome 21 occur. Nothingof intellectual disability. Head injuries, diseases, genetic either parent did, or did not do, caused Down syndrome.conditions, birth defects and strokes are all possible causesfor intellectual disability. Genetic disorders cause down Children with Down Syndrome can usually do most thingssyndrome or fragile X syndrome; and environmental that any young child can do, such as walking, talking,factors, such as alcohol intake before birth, also can cause dressing and being toilet-trained. However, they generallyFetal Alcohol Syndrome (FAS). Intellectual disability do these things later than other children. About 30 to 50caused by certain infectious diseases (such as rubella) and percent of persons with Down Syndrome also havemetabolic disorders (such as Phenylketonuria, or PKU) congenital heart defects, and many have some visual andhave decreased as the result of widespread use of hearing impairment and other health problems with thechildhood vaccines and increased newborn screening. intestines, eyes, thyroid and skeleton. The severity of all of these problems varies greatly. Down Syndrome is not aDepending on the severity of the problem, a patient can condition that can be cured. However, early interventionlive a fairly normal life or a totally incapacitated life. It is can help many people with Down syndrome liveimportant for the level of severity to be properly diagnosed productive lives well into adulthood. Like all children,for the individual to be helped accordingly. Affected children with Down Syndrome greatly benefit from beingchildren sit, crawl, stand, walk, and run later than their age able to learn and explore in a safe and supportivemates. They learn to talk much slower than others. They environment. Being included in family, community, andhave difficulty speaking once they learn how to speak, for preschool life will help a child with Down Syndromeinstance they may mumble a lot or stammer. These develop to his or her full potential.individuals have difficulty with their memory as well assolving problems, and they do not easily recognize the 3.1.2 Autism 5results of their actions. Some children with ID go to regular It is a pervasive disorder of development characterized byschools and may attend regular classes but many need three distinctive behaviours. Autistic children havespecial attention to help them in areas where they have difficulties with social interaction, display problems withmore trouble learning. Ideally, their parents work with verbal and nonverbal communication, and exhibitteachers and others to come up with individualised repetitive behaviours or narrow, obsessive interests. Theseeducation plan (IEP) for the best way for each child to behaviors can range in impact from mild to disabling.learn. The best known ID are Down Syndrome and Autism varies widely in its severity and symptoms andAutism.3 ILO Website: http://www.ilo.org/global/about-the-ilo/press-and-media-centre/news/WCMS_123796/lang--es/index.htm4 Health Encyclopedia – Diseases and Conditions http://www.healthscout.com/ency/68/449/main.html5 NIH: National Institute of Child Health and Human Development 4
  • Definitions and Literaturemay go unrecognized, especially in mildly affected Stigma attached to PWID and their families is harmful,children or when more debilitating handicaps mask it. both in itself, since it can lead to feelings of shame, guilt andWhile not specific or universal to the disorder, 50-75% of isolation, and also because negative thoughts often leadindividuals with autism exhibit lower than average individuals to do things, or omit to do things, that harmintellectual abilities (APA, 2000, Pellicano, 2007). With no others or deny them services or entitlements.known cure to date, the relationship between autism anddevelopmental indicators (such as poverty) continues to bea knowledge gap. Autism typically affects the most 3.2.2 Discrimination and Exclusionfundamental aspects of quality of life, such as the ability to Discrimination occurs when a distinction is made against aunderstand what others feel and think, the ability to person that results in his or her being treated unfairly andcommunicate your basic needs or socialise with those unjustly on the basis of their belonging, or being perceivedaround you and the necessary understanding to process to belong, to a particular group. Discrimination does notand make sense of emotions6. only exist on personal or individual level, but also involves institutional discrimination where governmental bodies do not include the needs of certain disadvantaged groups in their policies and services. Because of the stigma3.2 Stigma, Discrimination and Exclusion associated with intellectual disability, and theIntellectual disability-related stigma often leads to discrimination that may follow from this, the rights ofdiscrimination of PWID and their families. This, in turn, PWID and their families in Ghana are frequently violated.leads to the exclusion of PWID and their families or other This violation of rights increases the negative impact onassociates. Stigma, discrimination and exclusion create, these individuals and their families. Schools, for example,reinforce and legitimize each other. They form a vicious may deny PWID education. Or employers may not accept acircle. person for employment on the grounds of the potential employee having intellectual disability. Families and communities may reject and ostracize PWID. Such acts3.2.1 Stigma constitute discrimination and violate human rights. At theStigma has been described as a quality that significantly level of the individual, for example, it causes unduediscredits an individual in the eyes of others7. It has its anxiety and distress-factors that are known to deepen theirorigins deep within the structure of society as a whole, and ill-health. At the level of the family and community, itin the norms and values that govern much of everyday life. causes people to feel ashamed, to conceal their links withFor example, in Ghana, parents of children with PWID, and to withdraw from participation in moreintellectual disability are often believed to have deserved positive social responses. And at the level of society as awhat has happened by doing something wrong. Often whole, discrimination against PWID reinforces thethese wrongdoings are linked to either “juju”, witchcraft, mistaken belief that persons born with intellectualdrug abuse, alcohol intake or its abuse by the mothers of disability are unacceptable and that they should besuch children. ostracized and blamed.Self-Stigmatization, or the shame that PWID as well as The family and community often perpetuate stigma andtheir families experience when they internalize the discrimination, partly through fear and ignorance, andnegative responses and reactions of others, is also evident. partly because it is convenient to blame those who haveSelf-stigmatization can lead to depression, withdrawal been affected first.and feelings of worthlessness. It silences and saps thestrength of already-weakened individuals andcommunities, and causes people to blame themselves fortheir predicament.6Iovannone et al., 2003, Jordan, 1997, 20057UNAIDS Report - August 2001 5
  • 4 METHODOLOGY4.1 Research SitesThe study was carried out in four regions namely: Brong Gurma (6.5%). The people of the region originallyAhafo Region, Upper East Region, Volta Region and the practised the Traditional religion. However, over a centuryGreater Accra Region and half ago, with the arrival of Christian missionaries in the region, many have converted to Christianity. Of a total population of around 1,635,421, 67.2% are Christians;4.1.1 Brong Ahafo Region 21.8% practise Traditional Religion and 5.1% are Muslims.With a territorial size of 39,557 square kilometers, it is thesecond largest region in the country (16.6%). The region isthe fourth most urbanized region in Ghana. Christianity 4.1.4 Greater Accra Region(70.8%) has the largest following, while Islam (16.1%) and The region shares boundaries with the Eastern region inno religion (7.8%) are the significant others. Large the South Eastern, Volta region in the South West and thefollowers of Christianity are in all districts. Islam is Central region in the South. It has Accra as the capital withpractised mainly in Kintampo (29.7%) and Atebubu 10 Metropolitan, Municipal and District assemblies.(24.4%), where Muslims outnumber the two most Analysis of the region shows that Greater Accra hasprofessed Christian denominations, Catholics (21.4%) and remained the most densely populated region in thePentecostals (17.6%). Traditional religion is most practised country since 1960. The largest ethnic group in the region isin Sene (18.8%), followed by Atebubu (15.7%) and the Akan, comprising 39.8 percent, followed by Ga-Kintampo (10.0%). More than half (57.6%) of the Dangme (29.7%) and Ewe (18%). The percentagepopulation aged 15 years and older in the region are in distribution of religious groups shows the predominancemarital union. Nearly a third has also never married. The of Christians (82.9%) in the region, compared with theproportion of the population not literate in the region is second major religion, Islam (10.2%). Twenty eight per cent48.5% of males are household heads compared to 12.7 per cent of females. Where a female is the head of household, it is very4.1.2 Upper East Region likely that it is a single person household or a single parentIt is bordered to the north by Burkina Faso, the east by the household. In spite of the minimum legal age of 18 yearsRepublic of Togo, the west by Sissala in Upper West and prescribed for marriage, there is an indication thatthe south by West Mamprusi in Northern Region. The total marriage takes place among persons aged 12-17 years.land area is about 8,842 sq km, which translates into 2.7% ofthe total land area of the country. Bolgatanga is the capitalof the 10 districts. Three main religious groupings are 4.2 Sample Sizefound in the region, namely the Traditional (46.4%), The study involved parents/care takers of PWIDs,Christianity (28.3%) and Islam (22.6%). Within the independent leaders and specialists in the field ofChristian religion, the Catholics are in the majority. The Intellectual Disabilities. A total number of 69gap in the educational attainment between the country and leaders/specialists and 53 parents were interviewed in thethe region is still very wide. The lack of education in the four regions in Ghana.region is not due only to general poverty and culturalpractices but also to the very late introduction of educationinto the region.4.1.3 Volta RegionThe region shares boundaries with Togo in the SouthWestern along the coast, Northern region in the NorthEastern corridors and Eastern region in the Southerneastern corridors. About four-fifth (78.7%) of the stock ofhouses are in the rural areas. Eight major ethnic groups arerepresented in the region and about 62 sub-groups speak56 dialects. The main ethnic group is the Ewe (68.5%),followed by the Guan (9.2%), the Akan (8.5%) and the 6
  • Methodology Sample size of the research per region Parents Leaders/Specialist Upper East Brong Ahafo Volta Greater Accra Figure 1: Distribution of interviewees per region4.2.1 Independent Leaders and SpecialistsThe sample group of independent leaders and specialist consisted of the following group8. Type No. of Persons Consultants 3 Ghana Education Service 12 Government Officials 5 Health Officials 2 NGO Leaders 13 Religious Leaders 5 Social Workers 2 Special Educators 22 Traditional Leaders 5 Total 698 See Annex 3 for a list of the individuals of this sampled group 7
  • Methodology4.2.2 Parents/Caretakers of PWID  3 group discussions with independent leadersThe parents or care takers that were interviewed for the  50 semi-structured interviews with parents/carestudy were mostly related to the member organisations of takers of Persons with Intellectual DisabilityInclusion Ghana. This surely had an effect on the level of  3 group discussions with parents of children withknowledge on intellectual disability and its causes. intellectual disabilityHowever, it was often felt that parents did not share all  Non-participant observationexperiences and were trying to give a more positive pictureof the situation than actually is the case. Because of the On average it took one (1) hour to finish an interview. Forstigma in Ghana, we were not able to interview parents the parents interviews, locations were selected where thethat actually hide their children from society and therefore privacy of the participant could be guaranteed as much ascannot incorporate their level of knowledge in the study. possible. The findings of this report are subjected to someThe parents whom we identified as those who hide their limitations following from the research methods used. Thechildren were not willing to collaborate in the study. research sample was taken from four regions in Ghana and is therefore not representative for the whole population of Ghana. Due to the locations of the interviewees especially4.3 Research Design the parents of PWID and to financial and practicalIn order to explore the research question and objectives, constraints it was not possible to visit every district in eachthe researchers used a combination of quantitative and region. We chose to select at least two districts per region soqualitative data collection methods to come to a reliable we can reach out to more parents. At the end of the researchreport. The following methods of data-gathering were we interviewed people in a total of 11 districts. Researchersused: have found that due to a social desirability bias, the reliability of the answers of the respondents was  secondary data Analysis of sometimes influenced. Therefore, the results of this  66 semi-structured interviews with Independent research cannot be generalized. Leaders / Specialists from government institutions, special schools, churches, etc 8
  • KEY FINDINGS: 5 A grim picture with glimmers of hope 5.1 Profile of Parent Respondents and their Children Which of the impairments is your child diagnosed of Down Syndrome Autism None Other Figure 2: Disabilities of Children40% of the parents who were interviewed had no formal diagnosis of the disability of their child, whereas32% 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 Voltaregion that were interviewed, were identified via the special (private) schools and the Korle Bu hospital andall had a formal diagnoses of the disability of their child, whereas 50% of the children in Upper East Regionand 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 diagnosesThe sample group was asked when they first suspected an irregularity in their childs development andwhat the first symptoms were that made them think something was not as it should be. The number ofparents that noticed something was amiss at a young age of their child was significant, where not trying tospeak or not responding to efforts of contact were mentioned most frequently as the first symptoms. 85% ofthe parents consulted a doctor whereas 5% said to have first addressed their concern to a spiritual leader. 9
  • Key Findings: A Grim Picture With Glimmers of Hope76% of the sample group parents and care takers were biological parents of children with intellectual disabilities, whowere living with their own children whereas other care takers were members of the immediate family. It is important tosay that in Ghana, it is not unusual that children grow up with the extended family instead of the parents. Logistics (beingclose 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 Parents67% of the parents who replied to the question what their children are identified with autism or down syndromemarital status is were married or remarried, whereas 21% could only mention or describe that specific type ofof the parents were divorced. This does not scientifically disability as what their children have, 28% of the parentsprove the assumption that a lot of fathers leave the mothers could also mention another type of ID. It needs to bewhen they find out about the disability of their child. mentioned that the independent leaders/specialists thatHowever, it was observed and estimated by specialists that were interviewed were mainly people that were in someas many fathers leave the mothers when they find out their way familiar with intellectual disability already. Theychild is intellectually disabled, same number of mothers were mostly introduced to us by our memberalso leave the fathers noticing their child has an intellectual organisations, who have done some good work in IDdisability. Independent leaders and specialists also education/awareness raising. Therefore it is assumed thatmentioned that, also because of the stigma, a lot of parents the sample taken in this research is not representative forfear to share the experience of their broken marriage and the level of knowledge all over Ghana.prefer mentioning that they are still married although theylive separately from their husband or wife. Unfortunately a similar interview with a sample of the Ghanaian population in general was out of scope of this5.2 Awareness of Intellectual Disability Issues study.95% of the independent leaders/specialists said they werefamiliar with the term intellectual disability whereas 60% 5.2.1 Causes of Intellectual Disabilityof the parents know the term. Most descriptions that were Three of the parents explained their thoughts about thegiven as an answer to the question to describe intellectual causes of intellectual disabilities with the following stories:disabilities were pointers in the direction of people that areunable to speak, talk, reason or move like their peers or “My wife left me for another man during hershow a slower development than is usual. Autism (42.5%) pregnancy. She was punished by the godsand Down Syndrome (45%) were mentioned most as by giving birth to my autistic son.intellectual disabilities people know. Epilepsy and She brought me the son and left.”hyperactivity were also mentioned. Most parents whose 10
  • Key Findings: A Grim Picture With Glimmers of Hope “My pregnancy lasted 11 months. Therefore my daughter has this problem.” “People who hate you or are jealous of you can “juju” you. They can consult a shrine to see if something good can happen to you in the future for you and your children and when they get to know it, they can cause for example a disability on your child. Thus what happened to our child.”Respondents were asked if they think diseases, accidents, curses/juju and medical errors can cause disability. The graphbelow shows most of the respondents (66) consider medical reasons and diseases as one of the causes of disabilitywhereas 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. Thereseems to be distrust in some doctors and nurses in Ghana. Some of the respondents explained how their childrensdisability 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 thatsome of these children with ID were never ill and all of a sudden they started experiencing the condition and there was noother reason found so it could not be anything else but something spiritual that caused the disorder. What do you believe is the cause of ID Leaders Parents Medical reasons / Accident Spiritual cause diseases / juju Medical error Other Figure 5: Causes of IDMost respondents mention medical reasons as (one of) the Only one of the respondents believes that PWID arecause(s) of intellectual disability. Amongst the other responsible themselves for their impairment andanswers people mainly mentioned that improper care explained this as the fact that they have taken too muchduring pregnancy, drinking alcohol and abusing drugs drugs. 11% of the parents feel they have a responsibility forduring pregnancy were causes of intellectual disability. their childs impairment.Convulsion and failed abortion were mentioned in somecases as well. Spiritual causes were frequently mentioned 5.2.2 Treatment or Cure of Intellectual Disabilityalthough most respondents refer to the fact that otherpeople think spiritual forces are causing intellectual “God works in a mysterious way. We have beendisability and said they did not believe that themselves praying and my son gets better slowly. In the end he will(anymore). In Brong Ahafo region, some independent be cured”, a parent explained when asked aboutleaders mentioned that if parents of this group of children whether intellectual disability can be cured.have money, people believe that income was beinggenerated by using their children for offering ceremoniesor other spiritual rites (juju). 11
  • Key Findings: A Grim Picture With Glimmers of HopeFigure 6 below shows the responses of both parents and independent leaders on this subject. Amongst the parentsinterviewed 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 thesolution for the problem of PWID. Amongst the independent leaders 54% say that intellectual disabilities can only bemanaged. Parents indicate that when they first found out their children had the disability, they tried to find all possibleways to cure the disabilities but sooner or later realized they should accept it is not curable. Some parents mentioned thatthey went to all kinds of spiritual / miracle churches, prayer camps and some to traditional priests for possible cure of theirchildren. All of these parents admitted however that their children were not healed after all the spiritual healing theysought after. Do you think intellectual disabilities can be cured Leaders Parents Yes No Don’t know Figure 6: Treatment or Cure of ID5.3 Inclusion of Persons with Intellectual The concept of Inclusive Education (IE) directly and indirectly has been embedded in several Government Disability in Ghanaian Society policies since independence. The aspiration for inclusiveIn the perspective of this study inclusion was defined as all education dates back to 1951 when Dr. Kwame Nkrumah,components that influence the integration of PWID in the in the Education Reform under the AcceleratedGhanaian society. To measure the level of inclusion of Development Plan, introduced fee-free compulsory basicPWID, questions about their inclusive education/special education for all children aged five and below sixteen. Iteducation, employment, health care system, attendance in sought to expand access to education to all; narrowing thechurch or mosque and social events were asked. gap between, the north and the south, as well as urban and rural areas. The policy was enacted into law under the Education Act of 1961 (Act 87) 95.3.1 Inclusive Education / Special EducationGhana considers a quality human resource base as very After independence, successive governments havecrucial in its development efforts to ensure socio-economic consistently pursued educational policies aimed atwell being of its citizens, and education plays an important expanding access for disadvantaged groups and limitingrole in this regard. Taking this direction, various policies exclusion from quality education. Ghana has ratifiedhave been initiated to enable citizens, especially children several international conventions on the right to educationirrespective of their socio-economic background, to have including the United Nations Declaration of Humanaccess to formal education to develop their potential and Rights, UN Convention on Rights of Children, UNESCOhave equal opportunities to contribute to the development statement on principles and practices of Special Needsof the country. This is based on the fact that the potential of Education, the Education for All (EFA) goals andchildren should be fully developed to contribute their Millennium Development Goals. These have beenquota towards the countrys development efforts. incorporated into national laws. 9 Achanso, S.A ( 2010). The impact of economic recovery programme on basic education in Ghana. University of Lincoln Thompson, N.M and Casely-Hayford, L. (2008). The financing and outcomes to education in Ghana. RECOUP Working Paper 16. RECOUP, Cambridge 12
  • Key Findings: A Grim Picture With Glimmers of HopeThe main legislative instruments which have promoted the Therefore it is estimated that 90 to 95% of the teachers haveadoption of Inclusive Education policies in the last 20 years not had any form of education on the special needs for thisin Ghana includes: group12. In 2005 SPED developed a new curriculum for school that educates Children with Intellectual Disability Article 25(a) of the 199210 constitution states: “All  (CWID). The new curriculum involves 6 years of basic persons shall have the right to equal education, 4 years of pre vocational preparation and 2 educational opportunities and facilities and with the years of attachment with service providers. However, this is still only a pilot project that has been implemented in 2 view to achieving the full realization of this right, basic specials schools in Ghana and the Special Education education shall be free, compulsory and available Division points out that funding of this new policy is a to all. major challenge. Until the end of 2010 the attention given to this group of children with special needs in the  The Childrens Act (560) of 1998 also enjoins government was low. The former Minister of Education government to promote the physical, promised however to allocate more resources to this area. mental and social well-being of every child. The latest available statistics (2011) shows that SPED runs  The Disability Law (Act 715) of 2006 provides for the 13 special schools13 for children with intellectual disability, establishment of Special Educational schools for children with severe special needs education. Parents which focus their education on training in social behaviour and guardians/care givers are to enroll them in schools and activities for daily living skills. In addition, there exist depending on their level of disability however there 24 units14 for special needs children with intellectual should be no barrier to their admission. disability (Integrated schools). There is however no central records for private schools in Ghana but New Horizon  The Education Act (778) of 2007 "Provide for inclusive School, Autism Awareness Care and Training Centre and education at all district levels" (Article 5). It also makes Multikids Academy have been identified as some of the two years kindergarten part of basic education, private schools supporting the education of CWID. extending basic education to 11 years. According to data provided by the Special EducationThe Ministry of Education (MOE) has a Special Education Division of the Ghana Education Service (GES) in 2011,Division (SPED), whose objective is to increase access to approximately 1860 children with intellectual disabilityquality education and to train the youth and children with attended education provided by the government. There isspecial educational needs, leading to employable skills for no reliable data that could be retrieved on the total numberan economic and independent living. The Education of children with intellectual disabilities that get any form ofStrategic Plan (2010-2020) claims that all children with non- education from private schools. Besides, the number ofsevere special education needs will be incorporated into children on the waiting lists of the special schools or specialmainstream schools by 2015.11 Despite the policy of units is high. The SPED has the ambition to open 20 newinclusive education, there are still a large number of units for CWID per year but foresee the budget that will bechildren and youth with intellectual disability who are are allocated for that will not be sufficient.not helped from undertaking basic education in regularschools. Also, others with very mild intellectual disability All respondents to the questionnaire see the value ofdo not complete basic education due to hostile teaching education for CWID. None of the respondents mentionedpractices adopted by some of the teachers. that no education for them is needed. The opinions about whether CWID should go to regular schools or specialIt is estimated that only up to one percent of PWID have schools were divided. 44% of the leaders thought CWIDaccess to education in Ghana. It is only in 2007 that the should go to special schools or institutions whereas 64% ofsubject of special needs was incorporated in the subjects the parents had the same opinion.taught at the several teacher training institutions.10 The Republic of Ghana (1992). The Constitution of the Republic of Ghana. Ghana Publishing Company, Accra11 GFD, 200812 Interview with SPED13 See annex 4 for List of Special Schools for Children with Intellectual Disability14 See annex 4 for List of Units for Special Needs (Integrated Schools) 13
  • Key Findings: A Grim Picture With Glimmers of Hope How do you think PWID should be educated Leaders Parents Regular school Special school No education needed Figure 7: Education of PWIDSome 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 didnt 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 wereinterviewed whose children were not in school mentioned they dont know about any good school for their children. Theyhad tried but the teacher from the regular school did not see the use of education for their child or the special unit or schoolwas too far from the house. An observation done during the research was also that most respondents apart fromspecialists in special education were not aware of special schools available in their town, district or region and cantherefore not be able to refer people who consult them regarding the education of PWID. This was also a remark oftenmade 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
  • Key Findings: A Grim Picture With Glimmers of HopeTeachers also believe that amongst the group of people During the interviews we were often told that the doctorwith low income, the interest in education is very low. said he could not do anything about it, or the child would“They will miss income if they send their child to school or need to grow out of the problems. Parents often responded to thisspend money on transport to school. This counts for children diagnoses by waiting and praying. Most doctors in Ghana,without disabilities, let alone those with intellectual disability. If especially those in rural areas, only seem to have very basicyou have 5 children and only a few Ghana Cedis to spend a day, knowledge about intellectual disability. For them thewhich child will you not allow to go to school to save cost?” diagnoses low IQ is the only thing they will say the child is experiencing. Parents often do not have the means to visit a specialist in Kumasi or Accra and therefore just accept5.3.2 The Health Care System what their local doctor tells them 15One of the main components for securing good health is theprovision of quality health services. The Ghana Health Two parents narrated what some doctors told them whenServices under the auspices of the Ministry of Health they took their children to the hospital for diagnosis:(MOH) identifies priority intervention areas for improvingthe health of children. “You wouldnt believe me if I told you that my doctorIn line with the Ghana Poverty Reduction Strategy (GPRS) said that I was the cause of my sons disability. I mustand to address the problem of financial barriers to health have drunk too much alcohol or used drugs”care access, the Government in 2001 initiated a NationalHealth Insurance Scheme (NHIS) to deliver accessible, “My son could still not speak when he was 5. When Iaffordable and good quality health care to all Ghanaians saw my doctor he said I just needed to be patient. So Iespecially the poor and most vulnerable in society. The went home”National Health Insurance Law – Act 650 came into effectin October 2003. Under the National Health Insurance Besides the fact that most doctors in Ghana seem to haveScheme, health care for Persons with Disabilities should be only a basic knowledge about ID and so are not muchfree but in rural communities most families are not helpful, there are only a few specialists in Ghana who haveregistered under the scheme. This affects PWID because of experience in supporting families with PWID. Ghana hasthe higher frequency of illnesses they suffer. A top official for example 6 speech and language therapists of whom 1 isat the National Health Insurance Scheme explained to one retired and is based in Kumasi, all others have their workof our researchers that even staffs working with the scheme places in Accra. The clientele therefore is mainly (aroundare not often aware of this arrangement. The Disability Act 75%) from the Greater Accra Region whereas a few come2006 contains provisions that provide for children with from other regions in the country. Only parents who havesevere disabilities thus access to free healthcare, but the real dedication to help their child, and in most cases areperson has to be able to go to a health clinic and needs to well educated or have travelled abroad know about theknow about the contents of this law and ask for added value of speech therapists and seek for theirarrangements. The knowledge of these rules is low. services. Doctors in general also do not know about the support the therapists can give children with intellectualDue to lack of knowledge on ID issues, most families or disability. The therapists get some referrals from doctors inrelatives take their CWID to mental hospitals for diagnosis Accra but the number of doctors who know aboutand treatment. Even though the mental hospitals do offer therapists places and services can be counted on one hand.some help there is lack of specialism in ID. More often than The therapists also have waiting lists for therapy servicesnot, wrong interventions are given. Also at the mental and suffer from a lack of funding to do all the work theyhospitals, mishandling by unqualified support staff, want to do.16torture, physical, sexual, psychological and verbal abuseare the order of the day. Isolation of such persons from There are also specialist doctors that can be counted on onesociety makes them completely invisible and forgotten by hand, mainly operate in the teaching hospitals in the bigall including policy makers. cities and are hard to access for people in rural areas in the country. There is no data available on how many patients are diagnosed with intellectual disability per year. After 15 Interview with a Doctor at the Korle Bu Teaching Hospital16 Interview with Nana Akua Owusu, a Speech and Language Therapist Korle Bu Teaching Hospital 15
  • Key Findings: A Grim Picture With Glimmers of Hopediagnoses the path way for the parents are usually confused. There is no list of special schools or institutes in Ghanaavailable 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 orinstitutions in their areas, if these are in place. Specialists see there is a major gap in the Health Services for PWID. There isno funding for research, not enough specialists that are able to diagnose, no interventions, support or services for familiesof persons with ID. 17Figure 9 shows responses given on the question how difficult it is to find good health care for PWID in Ghana. It seems thata lot of the parents accept what doctors tell them in that nothing can be done about the situation of their children. Leadersand specialists in Ghana are, however, less optimistic. 30% of them believe it is very difficult to find good health care forPWID in the country and 38% say it is difficult. How difficult is it to get good health care for PWID Leaders Parents Very Difficult difficult Somewhat Not difficult Don’t difficult know Figure 9: Difficulty of getting good health care support for PWID5.3.3 Assessment of Persons With Intellectual In 2010, NARC assessed 96 children with intellectual Disability disability (59 boys and 37 girls) and in the first quarter of 2011, the number of assessments done was 31 (22 boys, 9The National Assessment and Resource Centre (NARC) for girls). The number of yearly assessments is increasing. StaffChildren with Disabilities, based in Accra was established feels that people in Ghana are getting to know thein 1975 to augment the efforts of the Ministry of Education. assessment centre better and seem to start seeing the valueThe NARC has regional branches and its mission is to of education for PWID.enhance the educational opportunities of children withdisabilities and special educational needs, through the NARC deals with a difficult situation and often does notprovision of avenues for early identification and detection, have the right equipments to assess the differentfor the promotion of appropriate medical interventions disabilities of the children. The NARC is formally the onlyand educational and vocational placements. NARC in centre for assessment of CWID which means parents fromAccra has a work relationship with the psychiatric hospital other regions with little money would find it hard or nearlyin Accra. After a first assessment at the centre where an impossible to access the Centre. The deplorable state ofintellectual disability is suspected, children are referred to their building may be another sign of how seriously thethe hospital for further assessment. Based on the outcome care for children with special needs is being taken by theof that assessment, NARC advises parents where to take Ghanaian Government.their child to school.17 Interview with a Doctor at the Korle Bu Teaching Hospital 16
  • Key Findings: A Grim Picture With Glimmers of HopeA parent narrated, “After a lot of effort, the first thing my husband did to supportme in my quest about my sons disability was going to the National Assessmentand Resource Centre. He was back in the house soon. The state of the NARC wasanother confirmation for him that people dont take children like that seriously” Figure 10: The side view of the NARC Figure 11: The back view of the NARC 17
  • Key Findings: A Grim Picture With Glimmers of Hope5.3.4 Employment types of disability. For the vast majority of PWID, the opportunity to engage in work in the general communityBy ratifying or signing the United Nations Convention on has been denied them. Yet experience shows that many canthe Rights of Persons with Disabilities adopted in 200818 by successfully perform a wide range of jobs and can beGoG, the rights of persons with disabilities, including dependable workers, given the appropriate training andPWID, have been given some impetus. The Convention support. Work not only helps to provide them and theirrequires states including Ghana to provide training and families with the means to meet their basic necessities, butemployment opportunities for PWDs jobseekers alongside also allows them dignity and self-respect.non-disabled workers. Three respondents explained the situation ofFamilies often provide the main support for persons with employment of PWID with the followingintellectual disabilities, whether they are adults, children, statements:or adolescents. The care of family members withintellectual disabilities by productive adults means that “It is hard to find jobs for everyone in Ghana, so itsone or more parents are not able to access paid work or impossible for people with a disadvantage.”must work fewer hours or give up on job advancement.This exacerbates the familys economic and social “I dont know, I just pray that my daughters situationsituation, contributing to a vicious cycle of poverty and will improve and she will be able to find a job when sheexclusion. gets older.” “It is hard work to find employers who are willing to putResearch that has been done in the past focusing on effort in guiding PWID in their workplaces”.disabilities in general seems not to include PWID. Even theCentre of Employment of PWDs in Ghana, an NGO,mentions that the number of PWID in their records can be The research showed that 71% of respondents think it iscounted on one hand. More than for any other group, very difficult for PWID to get employment in Ghana.including people with other forms of disability, for PWID, Parents were more optimistic than the independent leadersunemployment rates and exclusion from employment and and specialists we spoke to. They referred the questions toother services in their communities are high. There is a the specific situation of their child and often hope they willgeneral perception that PWID are not capable of doing develop so that they will be able to find employment andanything useful, employers are also afraid to lose become financially independent. The 14% of thecustomers when they employ such persons. PWID want an respondents that were somehow neutral or positive, thoseopportunity to be included in a range of life experiences in who replied with somewhat difficult, not difficult or dontthe same way as the non-disabled or as persons with other know were all parents. How difficult do you believe it is for a PWID to get employment Very difficult Difficult Somewhat difficult Not difficult Don’t know Figure 12: Difficulty of getting employment for PWID18 http://www.ilo.org/global/about-the-ilo/press-and-media-centre/news/WCMS_123796/lang--es/index.htm 18
  • Key Findings: A Grim Picture With Glimmers of HopeDifference in argument to their answers was that independent leaders mostly look to it from the point of view of the moresevere stigma to PWID compared to other PWDs, whereas some parents dont acknowledge the fact that their child has aproblem. 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 tobe 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 willnot be challenging for PWID to find employment than for other disability groups. One parent said: “You cant see from thefirst moment that my child has a disability whereas it is obvious when someone is blind. Therefore I dont agree with the statement”.It was observed that parents from the rural areas in Ghana who have a low level of education themselves are morepositive 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 employment5.3.5 Marriage and Family Life to investigate each others family background. They do thisMarriage is a very important stage in the life of the to find out if there is anything that will prevent a successfulGhanaian. The main aim of getting married is to have marriage. They investigate to find out answers to questionschildren. There are different ways of choosing partners. For such as: are there any communicable or hereditary diseasesexample, in some communities in Ghana, parents choose like tuberculosis (T.B.), leprosy, insanity, autism, orpartners for their children. When a father feels that his son epilepsy in the family; had there been any criminal record,is ready for marriage, he finds a suitable wife for him. In the e.g., murder or stealing?; can the man look after a wife?past, most parents betrothed their daughters before theywere old enough to marry. Nowadays, parents who choose From the interviews it became clear that more respondentspartners for their children seek the childrens consent first. perceive it is very difficult for a PWID to marry someoneIn some cases too, the young people make their own choice who does not have a disability. Some respondents say it isand inform their parents. It is the customary practice for a better or in a lot of cases only possible for PWID to marryman to seek the hands of a woman in marriage. In most each other because they will understand each other bettercommunities it is a taboo for a woman to propose love and and probably non-disabled persons would not want tomarriage to a man. In the Ghanaian traditional set-up, marry a PWID. In some cases money was related to themarriage involves the man and the woman concerned as possibility of getting married or not and also abuse of girlswell as their families. Before the marriage, most families try with Intellectual Disability was mentioned. 19
  • Key Findings: A Grim Picture With Glimmers of Hope Leaders Parents Very difficult Difficult Somewhat difficult Not difficult Don’t know Figure 14: Difficulty of getting marriage for PWIDRegarding the way forward for PWID getting married, a question was asked about the ideal state of whether PWIDshould get married and have children. 72% of the parents think that PWID should be able to get married whereas 42% ofthe leaders shared the same opinion. Leaders often mention that it depends on the level of disability if a person should beable to get married. 54% of the respondents think PWID should be able to have children, whereas 18% disagreed on thatstatement. Leaders Parents Agree Neither agree nor disagree disagree Figure 15: Perception on whether PWID should be able to get married 20
  • Key Findings: A Grim Picture With Glimmers of Hope5.3.6 Social Life & Participation in the Family and “Yes, my child is included in society but only Community because I, as his mother, put a lot of effort in telling everybody what they need to know toRegarding the question related to PWID participating in accept him. If they stare at him I ask them whatsDecision making, some respondents made similar wrong and if I can help them.”comments saying: “My colleagues dont know about my childs “Whenever decisions are made, PWID are not disability. involved because nobody values their opinion.” They may treat me differently and I dont want “At a social gathering, the presence of a PWID that.” make people feel very uncomfortable so who will invite them to a social gathering or ask their “Everybody loves my son, they think he is opinion about a situation.” funny.” “They cannot do anything meaningful to help in the society and within the family so nobody will invite them for ideas.” 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 to78% of the parents however replied positively to the being spoken to and in one case the father started shoutingquestion if their child was doing small house hold tasks in at the child that he should hurry answering the questionthe house, whereas 22% answered no to this question. and at least look the interviewer in the eyes, whereas thisReasons that were given as not involving their children in child obviously had problems speaking and needed time tohouse work, were that they cannot do it or do not like doing find the right words.it.Respondents were also asked how they felt about PWIDgenerally. The responses were feeling: Pity (25%),Compassion (25%) and Sadness (24%). Fear, Avoidance 5.3.7 Participation in Church and Mosque Activitiesand Insults formed 10% of the answers, whereas 15% In general people believe that it is slightly or not difficultanswered with other reasons. for a PWID to be a member of a church. However even some parents who said it was not difficult, shared theirRegarding the question of PWID having a social life, 73% of experience on having to go to several churches before theythe independent leaders consider PWID having a social life found one that accepted the child or had people tellingas difficult or very difficult, whereas parents are more them not to take the children to church or the mosquepositive by replying in 35% of the cases that it is not because he /she may walk around and make noises thatdifficult to have a social life for their children. Many of will embarrass them.these parents refer to the fact that their children are verysociable and therefore make friends themselves. Persons Some parents also indicated:with down syndrome are seen as very sociable and aretherefore better integrated in social life in Ghana than “Even in church a lot of people dont wantpersons with autism. to come close to my child.”Some parents described the social life of their children with “My daughter wont kneel down at prayers,the following statements: so I dont take her to the mosque.” 21
  • 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 Parents Leaders Very difficult Difficult Somewhat difficult Not difficult Figure 16: Difficulty of participation in Church or Mosque5.4 Discrimination and Stigmatisation of PWID in Ghana “I am still very conscious of who to tell aboutIt is known that in Ghana the stigmatization and my sons disability and who not. People dontdiscrimination of persons with disabilities is significant understand.”and it is assumed that persons with intellectual disabilities “My colleagues dont know about my childssuffer from more discrimination than people with other disability. They may treat me differently and Itypes of disabilities. Main cause of the stigmatization is dont want that.”most likely to be the low level of knowledge about thedisabilities as well as the traditional beliefs that disabilities “My ex-husband didnt like my daughter andare caused by witch craft, a curse of God or so called “juju”. so didnt like me. He left us when she was 8 months old.”82% of the respondents agree with the statement thatPWID are discriminated in Ghana whereas 9% do not “ My wife left me when she realized that ouragree. The question as to what extent people believe PWID son could not be cured and people were callingare discriminated in Ghana shows a different picture. More her names. She said, living with our sonparents than independent leaders believe the would be trouble. She was very frightened.”discrimination is only sometimes whereas mostindependent leaders believe the discrimination is all the “Yes my child is discriminated against intime. Clearly, many factors underpin the forms of Ghana, not per se by individuals because Istigmatization, and discrimination described. Many of dont allow that, but by our government. Theythese relate to the very real fear of persons with ID that leave children like my son out of their policies”exists among the general public. The sources of this fear arecomplex and include lack of knowledge and “PWID are the most discriminated againstunderstanding of PWID, as well as the manner in which amongst the Persons with Disabilities. Thepeople believe that when you relate to such a person you stigma of this group is very serious.”shall contract same or you shall give birth to such childrenin the future when in fact it is not true. “He used to go outside the compound of the house but children in the neighbourhood wereThe experiences of some of the parent respondents teasing him and throwing stones at him. So werevealed the following: 22
  • Key Findings: A Grim Picture With Glimmers of Hope 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 narratedhow he is discriminated against just because he is a special educator for PWID. He told the interviewers thathe was called “the teacher of fools” or the “fools teacher”. Again when getting directions from somebodyand it happens that the school is used as one of the directional signs, you will hear the one giving thedirections describing the school as “ the school for the foolish people”. Do you think PWID are discriminated against in Ghana Parents Leaders yes, often yes, no, not at all don’t know sometimes Figure 17: Perceptions of discrimination against PWID in GhanaObservations during the interviews and talk with respect of PWID, their behaviour and therefore the wayspecialists in the field showed that parents are often society perceives them.embarrassed to admit they experience discrimination.Many also are reluctant to admit that their own efforts at 5.5 Existence and Implementation of Disabilityadvocacy and awareness raising have helped to reduce Policies & Strategies targeted at PWIDdiscrimination against their children. Teachers in the In the interviews respondents were asked if they werespecial unit schools of GES mentioned that thanks to the aware of legislations on disability and if so, to mentionfact that the special units are amongst regular schools, the some of its contents. The majority of the respondents diddiscrimination is decreasing although still considerable in not know of the existence of any legislation and the onesGhanaian daily life. who knew of for instance the Disability Law often did not know what the Act is about. The study shows that theDuring the interviews, the question was asked what can be knowledge amongst Parents and Care takers of thedone to stop discrimination towards PWID. Respondents legislation on disability is low. 41% of the parents are notanswered that one way to stop discrimination mentioned aware of any legislation whereas only 35% of the parentsby the majority of the respondents is education and can mention the name of the Disability Law. Furtherawareness-raising about the disability, either by NGOs, questions on the contents of the act gave the impressionGovernment, or Churches. Some respondents strongly that out of 35% who mentioned the Act, a maximum of 10%pointed out that education needs to begin from the home, could mention something about the contents of the Act. Ifwhich means that parents have to treat their children with the knowledge is this low, it will be hard to make use of theintellectual disability with respect and show them that provisions under the act.they are just like anybody else. This will increase the self- 23
  • Key Findings: A Grim Picture With Glimmers of Hope Are you aware of any legislation for PWID No Disability Act (715) Yes but can’t name any Figure 18: Level of awareness of any legislation for PWIDThe general opinion of independent leaders and specialists i. To ensure that law enforcement personnel in cases ofis that implementation of the Disability Law needs to be arrest, detention, trial and confinement of PWDsgiven more attention by the Government to include PWID take into account the nature of their disabilitiesin society. j. To encourage full participation of PWDs in cultural activitiesThe Persons with Disability Law was passed in June 2006 k. To ensure access of PWDs to the same opportunitiesand guarantees PWDs access to education, employment, in recreational activities and sports as other citizenstransportation, public places, and free general and l. To promote CBR Programmes as a means ofspecialist medical care. The Law addresses all major empowering and ensuring the full participation ofdisability concerns but does not make provisions for the so- PWDs in societycalled hidden disabilities (those that are not easy to detect).The Act has 12 main objectives and provides guidelines for The Act also established the National Council on Personsthe relevant sectors on how they should respond to the with Disability (NCPD) with the goal of proposing andneeds of PWDs: evolving policies and strategies to enable PWDs to enter and participate in the mainstream of the national a. To educate Ghanaians on the rights, potentials and development process of Ghana. 19 The Council is made up responsibilities of both society and PWDs of high-ranking representatives from a number of key b. To generate and disseminate relevant information ministries as well as from Organizations of Persons with on disability c. To create an enabling environment for the full Disability (OPWDs) and organisations or institutions participation of PWDs in national development working for PWDs. Persons with Intellectual Disability are d. To ensure access of PWDs to education and training represented on the board of the council by the Director of at all levels the Autism Awareness, Care and Training Centre, who is e. To facilitate the employment of PWDs in all sectors also a board member of Inclusion Ghana. The Council of the economy coordinates overall disability related activities in Ghana f. To promote disability friendly roads, transport, and and function as advisor to the government on disability housing facilities g. To ensure access of PWDs to effective health care issues. The council also monitors the implementation of the and adequate medical rehabilitation services Disability Law. 20 h. To ensure that women with disabilities enjoy the same rights and privileges as their male counterparts19 UNDP, 2007, p. 130.20 GFD, 2008. 24
  • Key Findings: A Grim Picture With Glimmers of HopeOther legislation include the National Disability Policy Under the 1992 Constitution, persons with disabilitiesDocument, December 2000 and the 1992 Constitution. (PWD) are guaranteed protection against all exploitationThe National Disability Policy Document which secures and treatment of a discriminatory, abusive or degradingthe specific rights of PWD was passed by cabinet in nature by the constitution (Article 29). It also mandates theDecember 2000. This policy was largely in response to the legislature to enact appropriate laws (Article 37) andUN Standard Rules on the Equalization of Opportunities requires access to FCUBE (Article 38). Provision is alsofor PWD (UN, 1993). It legislates PWD rights as regards to made for special incentives to be given to PWDs engaged ineducation, transportation, community acceptance, business and also to business organizations that employhousing and employment (MoESW, 2000). PWDs in significant numbers. 25
  • 6 CHANGING ATTITUDESThe research did not only focus on analyzing the current in the Local Government Act. It is the duty of the Districtsituation for PWID in Ghana but also asked respondents Assemblies to plan and secure implementation of servicesquestions about what would improve the situation. with assistance from specialized Governmental AgenciesQuestions involved contributions of governmental and NGOs to enable PWID to go to school, have access toinstitutions, NGOs, media, parents and PWID themselves. quality health care, secure skills training and support forOpinions of both independent leaders and parents on this employment and income generating opportunities andmatter are described below: participate in the social life of their communities.Most respondents see education and sensitization of the The answer to the question what can be done by thepublic as the answer to the discrimination of PWID in Ghanaian government to improve the situation for PWIDGhana. Leaders often mention that it is thanks to the fact was answered from many different perspectives butthat more and more people learn about intellectual education was often the bottom line. Teachers oftendisability because of their studies, television programs, mentioned that more teachers should be trained in thework or experiences that the situation for PWID is slowly special needs for PWID but also regularly mentioned theimproving. The fact that there are integrated schools (units poor salaries for special educators and the lack of teachingfor special needs children within the same compound of materials, whereas some teachers in regular schools seempublic schools) helps children to accept their peers with to have the opinion that the special needs teachers are notintellectual disability from an early stage. doing anything useful and should therefore get lower salaries A parent interviewed as part of the study reported that:6.1 The Role of GovernmentThe Ghanaian government is a constitutional democracy “The big men in the country give priority to thingsheaded by a President. The parliament has 230 seats, all that are for their own benefit. They often dontelected on 4 year terms. The country is divided into 10 even know about the problems PWID face”.administrative regions and 166 districts and 10metropolitan and sub-metropolitan assemblies. In order to A teacher also indicated:democratize, decentralize state power, and institutionalize “There is no incentive to become a teacher in adecision making at the grassroots level, the 1992 special school although we have a moreConstitution effectively decentralized political and challenging job than our colleagues in the regularadministrative authority under the District Assemblies. schools”.The District Assemblies make and implement decisions It was also noted that the government does not pay enoughand engage in activities required to meet the needs of the attention to special education in Ghana. The waiting lists inpeople in the areas under their jurisdiction in economic, the special school and the small number of special schoolseducational, health, environmental hygiene, recreation that are in operation at this moment suggest that furtherand utility services. This means that the needs of PWID attention in this field is much needed.have to be administered at the district level, as spelled out What can be done to improve inclusion of PWID by the government ID w ID rs r he La he W on Ot rP ac of le fo te n op tio n e pe at tio ta uc en a e uc at Ed em uc ed pl Ed e Im ov pr Im Figure 19: Improve Inclusion by Government 26
  • Changing AttitudesPeople feel that the opportunities for PWID to go to school criticism of government policy. Animated phone-inand to learn are too few, while education of the public on programmes are staple fare on many radio stations. RadioIntellectual Disability also needs urgent attention. is Ghanas most popular medium, although it is being challenged by increased access to TV. The number of A GES Director indicated: people who have access to the internet grows every day, “Before I got this job, I had a different opinion and mobile telephones are becoming a significant source of about PWID than I have now. The government news. should include topics on ID in more studies, so that more people learn about the situation of The media indeed has an important role to play in the PWID” improvement of the situation of PWID in Ghana. Education of the public on ID issues and discussion of theAmongst the other answers respondents gave, they subject for example on their morning shows were oftenreferred to improvement of the health care system, mentioned by respondents. Some of the specialistseducation of doctors and nurses and opening special mentioned that the media do not always use the rightinstitutions where PWID could live. 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 be6.2 The Role of the Media accurate and correct with their information when theyGhana enjoys a high degree of media freedom and the spend time on the subject on television. Some respondentsprivate press and broadcasters operate without significant also mentioned the fact that journalists expect moneyrestrictions. The Commonwealth Press Union has before publishing news on ID in the newspapers has adescribed Ghanas media as "one of the most unfettered" on negative effect on the number of articles published in thethe continent. The private press is lively, and often carries diverse media. What can be done to improve inclusion of PWID by the media Educate Seek right Discuss/publish Advocate resources info Figure 20: Improve Inclusion by Media 27
  • Changing Attitudes6.3 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 schoolsParents should play important roles in the improvement of lives of PWID in Ghana. Especially those who are welleducated and whose children are diagnosed with specific type of disability often do a lot of research in this area and arethe best advocates for their childrens rights. A considerable number of parents indicated during the interviews that it isthanks to their efforts that their children are being accepted in the community or in society. Most respondents mentionedthat parents should show pride and love to their child and support their child in their development. This would help toimprove their situation and that of their peers on the longer term. What can be done to improve inclusion by parents of PWID hts ild lk nt ren r rig ch /ta me ild Othe r f te rn ch ei eo ca ve r th rid vo go ort fo p Ad sh pp up ho w Pu Su nd S Sta Figure 21: Improve Inclusion by Parents6.4 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 bementioned that socialization was often mentioned from the perspective that the PWID are responsiblethemselves for exclusion because they do not socialise. A substantial number of parents of children withautism, for example, mentioned this as one of the things their children could or even should do, whereas in a lotof 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 themselves6.5 The Role of NGOsNGOs 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 thosefunds to start more special schools, vocational training schools, hospitals, etc. At the same time therewas the assumption of some of the respondents that NGOs use funds given by donors for the wrongpurposes 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 otheranswers given, financial support for parents to pay for schools fees, transport or medical support, wasalso common. What can be done to improve inclusion of PWID by NGOs Fill gaps of Advocacy Other Nothing government Figure 23: Improve Inclusion by NGOs 29
  • 7 CONCLUSIONIn all the research sites, significant levels of stigmatization, nongovernmental and community-based organizations,discrimination and exclusion, both overt and covert, were the business community and workers organizations;identified in education, employment, health care, and doctors, politicians, nurses and health-care workers,social life. In Education for example, most professional teachers, youth leaders, women leaders and socialteachers even though are not trained in special education workers, and the police. Additionally, links need to beheld exaggerated fears about children with ID which made with broader struggles that address underlyingprofoundly affected their ability to admit such children in economic, social, cultural and political inequalities.their class. Children with ID were often denied the rights togo to school or were segregated from other children. If effective responses to ID-related stigma and discrimination are to be promoted, work has to be doneWidespread and enduring changes in social attitudes are simultaneously on several fronts: communication andrequired if we are to make headway against ID-related education to encourage better understanding of ID; actionstigma, discrimination and exclusion. Bringing about such and intervention to establish a more equitable policychange requires mobilizing many different stakeholders, context; and legal challenge, where necessary, to bring toincluding parents of PWID, friends and families; religious account governments, employers, institutions andand traditional leaders, legal and civil rights groups, individuals. 30
  • RECOMMENDATIONS: 8 Opening New Doors to PWID and their FamiliesIn order to reduce levels of stigmatization, discrimination 8.2 Implementation and Improvement onand exclusion associated with intellectual disability in Government PoliciesGhana, a number of interrelated actions are needed.Failure to act now will have the severest consequences. The  should be given to assessments of Attentionfollowing recommendations seek to address many of the PWID. When a person is not properly assessed,points made in the study and to establish the grounds for support given may not be relevant and can evenproper dialogue about how to effectively challenge do harm.stigmatization, discrimination and exclusion of PWID inGhana:  Promote inclusive education for the children with “mild” disorders, and integration of special units in compounds of regular schools, using the same playground.8.1 Meeting the Needs of Parents and Families of PWID training of teachers and the inclusion of Promote intellectual disability issues in curriculum of  A more enabling environment needs to be created teachers, nurses, social workers, etc. to increase the visibility of PWID and to facilitate the formations of parents self help groups so that  Create vocational training for PWID and advocate stigma, discrimination and exclusion can be for employment via employers challenged collectively. number of Unit Schools for Intellectual Increase  a lack of knowledge and a need for There is Disability, also in rural areas, improve education of parents about the rights of their infrastructure and provision of tools and inform children and about how to get help to challenge key players about these schools. discrimination they face in schools, health care  Within the health-care setting, ensure that settings. Sharing experiences in parents self help intellectual disability is taught within professional groups would be a way to deal with both issues. training curricula especially for community  More education on the laws, rules and regulations nursing so that such children or persons with ID and access to the justice system to address will easily be identified. violations of their childrens rights in the contexts  Implementation and regular monitoring of the of employment and education needs attention. Disability Law.  and awareness raising of parents will Education  of the public and parents of PWID on Education hopefully contribute in acceptance of their the Disability Law and disability issues in general. childrens disability and will be a start to think of the future of these children .  Special consideration should be made for PWID to also access the District Assemblies Common  of life-skills education and counselling Promotion Fund. to help parents and caretakers of children with intellectual disability cope with stigma.  Legal protection for PWID is a powerful way of redressing, and thereby mitigating, the unequal  is needed for social change in response Advocacy power relations, the social inequality and the to intellectual disability-related stigmatization, exclusion that lie at the heart of ID-related discrimination and exclusion. The role of parents stigmatization and discrimination. Such and families of PWID and of religious and political protection should be promoted, together with leaders in such a process cannot be appropriate reporting and enforcement underestimated. mechanisms. 31
  • Recommendations: Opening New Doors To PWID And Their Families8.3 Media Intervention 8.4 The Community is key  Raise awareness so that families and PWID can  in communities about some identified Education access interventions (e.g. care and support causes and prevention of intellectual disability, services) as they become available, or hold capabilities of PWIDs, the need to send children authorities accountable if such services are not with intellectual disabilities to school and the available. contents of the Disability Act.  Public information campaigns have an important portrayal of PWID at grassroot level Positive role to play in helping people understand the through role models. Demonstrate the unfairness and unjustness of stigmatization and contribution PWID can make to society and the discrimination of PWID. They can also change development of the nation, for example by individual and social attitudes. showing role models of PWID who have made a meaningful contribution to society.  for positive portrayal of PWID and Lobbying change of terminology in the media.: The media  Involvement of religious leaders in educating the needs to involve PWID in programmes public about intellectual disability issues.  Media campaigns: television and radio shows in  Support PWID in training and education local, understandable language about PWIDs issues.  Positive portrayal of intellectual disability at grass root level through campaigns and advocacy  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. 32
  • 9 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
  • REFERENCESAgbenyega, J. (2003). The power of labeling discourse in Ghana Center for Democratic Development. (2006). Thethe construction of disability in Ghana. Retrieved April Disability Law, Popular version. Accra.15, 2011, from http://www.aare.edu.au/03pap/agb03245.pdf Ghana Education Service. (2003). Increasing Access toAmerican Association on Intellectual and Developmental Quality Basic Education for Children with SpecialDisabilities. (2011). Definition of Intellectual Disability. Needs: Special Education Project with VSO, Accra: GES.Retrieved May 26, 2011, from AAIDD website:http://www.aamr.org/content_100.cfm?navID=21 Ghana Federation of the Disabled. (2008a). The Ghana Disability Law [ACT 715]. Retrieved May 19, 2011, fromAmerican Psychiatric Association. (2000). Diagnostic and Ghana Federation of the DisabledStatistical Manual of Mental Disorders. Fourth Edition. Website:www.gfdgh.org/GHANA%20DISABILITY%20AText Revision: DSM-IV-TR, (4th ed.). Washington D.C., CT.pdfAmerican Psychiatric Association Ghana Federation of the Disabled. (2008b). ContextualAmerican Psychological Association. (2001). Publication Analysis of the Disability Situation in Ghana. RetrievedManual of the American Psychological Association. May 19, 2011, from Ghana Federation of the DisabledWashington: APA Website: www.gfdgh.org/Context%20analysis.pdfAnthony, J. H., 2009, Background paper prepared for Ghana Federation of the Disabled. (2009). Strengtheningthe Education for All Global Monitoring Report 2010. the Disability Movement in Ghana Project. RetrievedReaching the marginalized, Access to Education for May 19, 2011, from Ghana Federation of the DisabledStudents with Autism in Ghana: Implications for EFA Website: www.gfdgh.org/PILOT%20SURVEY%20REPORT-Bhanushali, K. (2007). Changing Face of Disability %20BIRIM,%20HO,%20MANYA.pdfMovement: From Charity to Empowerment.Ahmedabad: Mahatma Gandhi Labour Institute. Ghanadistricts. (2006a). Know more about Ghana. Retrieved May 10, 2011, from Ghanadistricts:Deal, M. (2006). Attitudes of disabled people towards http://www.ghanadistricts.com/home/?_=42other disabled people and impairment groups. London:City University. Ghanadistricts. (2006b). List of all MMDAs in Ghana. Retrieved May 10, 2011, from Ghanadistricts:Eide, A. & Loeb, M. (2005). Data and Statistics on http://www.ghanadistricts.com/home/?_=27Disability in Developing Countries: ExecutiveSummary, Disability Knowledge & Research Government of Ghana. Growth and Poverty ReductionProgramme, 3. Strategy (GPRS II) - (2006-2009).Ingstad, B. (31 March). Fact Sheet on Poverty and Jørgensen, P. (2009). Initiatives supported by DanishDisability. Inclusion International, www.inclusion- organisations regarding persons with disabilities ininternational.org/site uploadsA1223821811255866183.pdf Ghana. Accra.GES (2005), Special Educational Needs Policy Lewis, A. & Norwich, B. (2005). Special Teaching forFramework Special Children?: Pedagogies for Inclusion. Maidenhead, Open University Press.GFD/NCPD. (2010). Guidelines for the Disbursementand Management of the District Assembly Common Masood, A. F.,Turner, L. A. & Baxter, A., (2007). CausalFund for Persons with Disability. Retrieved May 19, 2011, Attributions and Parental Attitudes toward Childrenfrom Ghana Federation of the Disabled Website: with Disabilities in the United States and Pakistan.www.gfdgh.org/GUIDELINES%20on%20Common%20Fu Exceptional Children, 73, 4, 475-87.nd.pdf 34
  • ReferencesMiles, S. (2000). Overcoming Resource Barriers: the Voluntary Service Overseas. (2001). VSO Position Paper.Challenge of Implementing Inclusive Education in Including disabled people; Disability, VSO andRural Areas. development. London.Republic of Ghana, Ministry of Employment and Social Voluntary Service Overseas. (2006). A handbook onWelfare. (2000). National Disability Policy Document. mainstreaming disability. London.Republic of Ghana. (2003). Education Strategic Plan 2003-2015. Ministry of Education.Republic of Ghana. (2004). The Development ofEducation. National Report of Ghana: The basiceducation division of Ghana Education Services. Accra:Assembly Press.Slikker, J. (2009). Attitudes towards Persons withDisability in Ghana of Persons with Disability in Ghana.Retrieved May 19, 2011, from Ghana Federation of theDisabled Website:www.gfdgh.org/VSO%20Attitudes%20towards%20PWDS%20in%20Ghana.pdfTV3 News: Ghana statistical Service release of 2010provisional census results. Retrieved May 5, 2011 fromYou Tube Website:www.youtube.com/watch?v=t3oD5QOerYMTwumasi A.P. (2001). Social research in ruralcommunities, Accra: Ghana Universities Press.UN (2006). Convention on the rights of persons withdisabilities.UN (2006). Convention on the rights of persons withdisabilities: Optional Protocol.UNDP (2007). Ghana Human Development Report2007: Towards a More Inclusive Society. Ghana.United Nations (UN). (1993). Standard Rules on theEqualization of Opportunities for Persons withDisabilities. 85th plenary meeting, 20 December 1993.Voluntary Service Overseas Ghana. (2007). Concept Note:Public Perceptions on persons with Disability - Surveyof VSOs four focus regions in Ghana: Volta, Eastern,Central & Greater Accra Regions. 35
  • Annex 1 Interview Guide Parents / Caretakers of PWIDInterviewer: Date of Interview:Child/Relations Name:Region: Residence: £ £ Village TownLanguage: £ £ Ga English Twi £ Ewe £ £ £ Hausa Other:Sex: £ £ Male FemaleReligion: £ Christian £ £ Muslim OtherPART 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 PWIDPART B 1. Have you heard of the term intellectual disability / mentally handicapped? £ Yes £ No £ Dont 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, ..................................................................................................................................................... £ Dont 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
  • Interview Guide-Parents / Caretakers of PWID 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 theres 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 £ Dont know £ Not at all Please explain:.................................................................................................................................... 38
  • Interview Guide-Parents / Caretakers of PWID18. Did you notice any change in your relationship with other family members?£ Yes, significant£ Yes, slightly£ Dont know£ Not at allPlease explain:....................................................................................................................................19. Did you notice any change in your relationship with the neighbours and community?£ Yes, significant£ Yes, slightly£ Dont know£ Not at allPlease 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 Depends23. 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 £ Dont know b.Get good education? £Very difficult ££ difficult £ Difficult Somewhat Not difficult £ Dont know c. Get good health care? £Very difficult ££ difficult £ Difficult Somewhat Not difficult £ Dont know 39
  • Interview Guide-Parents / Caretakers of PWID d. Have a social life? £Very difficult ££ difficult £ Difficult Somewhat Not difficult £ Dont know e. Be financially independent from others? £Very difficult ££ difficult £ Difficult Somewhat Not difficult £ Dont know f. Get married? £Very difficult ££ difficult £ Difficult Somewhat Not difficult £ Dont know g. Participate in decision-making in the family and community? £Very difficult ££ difficult £ Difficult Somewhat Not difficult £ Dont know h. Be an active member of a church? £Very difficult ££ difficult £ Difficult Somewhat Not difficult £ Dont know 25. Do you think persons with intellectual disability are discriminated against and to what extent? £ Yes, often £ Yes, sometimes £at all No, not £ Dont 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, ........................................ £ Dont 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 £ Dont know 30. What do you think can be done for persons with intellectual disabilities to improve their inclusion in society by: a. Government Improve £ education for PWID £ Implementation of Law £ people on ID Educate £ teachers Educate £ Other,..... £ Nothing 40
  • Interview Guide-Parents / Caretakers of PWIDb. Parents /family of persons with intellectual disability£ for their rights Stand up£ Show pride of child/Stop hiding children£ Advocate/Talk£ Push government£ children Support£ Other£ Nothingc. Media£ Educate£ resources Seek right£ Discuss/publish information£ Advocate£ Other£ Nothingd. Persons with intellectual disability themselves£ Accept disability£ Socialise£ yourself/Advocate Speak for£ Other£ Nothinge. NGOs£ of government Fill gaps£ Other£ Nothing31. Are you aware of any legislation or law for people with disabilities?£ Q32-33) Yes (go to£ No32. 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
  • Interview Guide-Parents / Caretakers of PWIDPART CTo what extent do you agree or disagree with the following statements?1 = Agree, 2 = Neither agree nor disagree, 3 = Disagree I. My child/relation is treated fairly in Ghana 1 2 3 II. My child/relation should live in special institutions 1 2 3 III. My child/relation should stay at home 1 2 3 IV. My child/relation should be able to have children 1 2 3 V. My child/relation is well integrated into society 1 2 3 VI. My child/relation should participate like everyone else in social 1 2 3 activities VII. My child/relation is discriminated in Ghana 1 2 3 VIII. My child/relation should be kept away from other children in 1 2 3 school IX. My child/relation should be able to get married 1 2 3 X. My child/relation should study in regular schools 1 2 3 XI. I /The family is blameable for my child’s disability 1 2 3 XII. It is okay with me if a person with an intellectual disability was my 1 2 3 next door neighbour XIII. My child/relation should be kept apart from the rest of the society 1 2 3 XIV. People should avoid person with intellectual disability because 1 2 3 they can transmit the disability to other people XV. My child/relation should have the right to vote in political elections 1 2 3 when he/she turns 18 XVI. My child/relation is less likely to be hired for a job than those with 1 2 3 other form of disabilities or without disabilities, even if they are equally qualified 42
  • Annex 2 Interview Guide Independent Leaders / SpecialistsInterviewer: Date of Interview:Interviewees Name: Telephone:Region: Town:Job/Function: 1. Have you heard of the term intellectual disability / mentally handicapped? £ Yes £ No £ Dont 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, ..................................................................................................................................................... £ Dont 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 £ Dont know b.Get good education? £ Very difficult £ £ difficult £ Difficult Somewhat Not difficult £ Dont know c. Get good health care? £ Very difficult £ £ difficult £ Difficult Somewhat Not difficult £ Dont know d. Have a social life? £ Very difficult £ £ difficult £ Difficult Somewhat Not difficult £ Dont know e.Be financially independent from others? £ Very difficult £ £ difficult £ Difficult Somewhat Not difficult £ Dont know f. Get married? £ Very difficult £ £ difficult £ Difficult Somewhat Not difficult £ Dont know g. Participate in decision-making in the community? £ Very difficult £ £ difficult £ Difficult Somewhat Not difficult £ Dont know h. Be an active member of a church? £ Very difficult £ £ difficult £ Difficult Somewhat Not difficult £ Dont know 12. Do you think persons with intellectual disability are discriminated against and to what extent? £ Yes, often £ Yes, sometimes £ all No, not at £ Dont know 44
  • Interview Guide-Independent Leaders / Specialists13. 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 withintellectual disability?£ Yes, .....................................................................................................................................£ No£ Dont know15. How do you think PWID should be educated?£ No education needed£ schools In regular£ schools In special16. How comfortable would you feel if persons with intellectual disabilities were living in yourhouse / next door neighbour:£Very Uncomfortable £ uncomfortable £ Slightly Comfortable £ Dont know17. What do you think can be done for persons with intellectual disability to improve their inclusionin society by:a. Government£Improve education for PWID£Implementation of Law£Educate people on ID£Educate teachers£Other,..........................£Nothingb. Parents /family of persons with intellectual disability£ up for their rights Stand£ pride of child/Stop hiding children Show£ Advocate/Talk£ government Push£ Support children£ Other£ Nothing 45
  • Interview Guide-Independent Leaders / Specialists 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 / SpecialistsPART BTo what extent do you agree or disagree with the following statements?1 = Agree, 2 = Neither agree nor disagree, 3 = Disagree I. Persons with intellectual disability are treated fairly in Ghana 1 2 3 II. Persons with intellectual disability should live in special institutions 1 2 3 III. Persons with intellectual disability should stay at home 1 2 3 IV. Persons with intellectual disability should be able to have children 1 2 3 V. Persons with intellectual disability are well integrated into society 1 2 3 VI. Persons with intellectual disability should participate like everyone 1 2 3 else in social activities VII. Persons with intellectual disability are blameable for their disability 1 2 3VIII. Persons with intellectual disability are discriminated in Ghana 1 2 3 IX. Children with intellectual disability should be kept away from other 1 2 3 children in school X. A person with an intellectual disability should be able to get married 1 2 3 XI. Children with intellectual disability should study in regular schools 1 2 3 XII. I am happy to be associated with persons with intellectual disability 1 2 3XIII. It is okay with me if a person with an intellectual disability was my next 1 2 3 door neighbourXIV. Persons with intellectual disability should be kept apart from the rest 1 2 3 of the society XV. People should avoid persons with intellectual disability because they 1 2 3 can transmit the disability to other peopleXVI. Persons with intellectual disability should have the right to vote in 1 2 3 political electionsXVII. Persons with intellectual disability are less likely to be hired for a job 1 2 3 than those with other form of disabilities or without disabilities, even if they are equally qualified 47
  • Annex 3 List of Respondents-Independent Leaders / Specialists RESPONDENT FUNCTIONMawuli Tetteh Consultant, Special Needs EducationMohammed Bukari National Inclusive Education Coordinator, GESMawusi Adiku Educational Director, Autism Awareness, Care & TrainingAlexander Tetteh Executive Director, Centre for Employment of PWDsCharles Appiagyei Executive Director, Ghana Society for the Physically DisabledLawrence Lamina Executive Director, Echoeing HillsPhilip Okai Darlas Social Worker, Echoing HillsSheikh Ahmed Adjei Adjetey Deputy Regional Imam, Ghana Muslim MissionSuleiman Nettey Secretary, Council of Ghana Muslim MissionGrace Preko Head, National Assessment and Resource CentreDr. Albert Paintsil Head, Plastic Surgery, Korle-Bu Teaching HospitalDuut Bonchel Abdulai Acting Executive Secretary, National Council on PWDsRita Kyeremaa Executive Director, Ghana Federation of the DisabledNii Tetteh Adjabeng I Chief, Adabraka AtukpaiNii Okwei Kinka Dowuona VI Chief, OsuDr. Ebenezer Badoe Intellectual Disability Specialist, Korle-Bu Teaching HospitalRev. Sister Catherine Gah Assessor, National Assessment & Resource CentreNana Akua Owusu Speech & Language TherapistDoreen Araba Obu Special Educator, Madina Cluster 1 EID Unit, AccraMercy Asiedu Special Educator, Madina Cluster 1 EID Unit, AccraGodfred Nudey Secretary, Traditional Council of KlefeGeorge Gura District Director, Ghana Education Service, HoJaphet Buamah Municipal Special Education Officer, HoElizabeth Adu Special Educator, Anglican Basic School EID Unit, HoMawusi Awuni Special Educator, Anglican Basic School EID Unit, HoJohn Duaye Special Educator, Anglican Basic School EID Unit, HoEsinam Arku Special Educator, Anglican Basic School EID Unit, HoKudior Shine Teacher, Helekpe EP Primary SchoolEmily Chekpa National Service Person, Helekpe EP Primary SchoolVincent Bansah Head Teacher, Helekpe EP Primary SchoolFrank Bissi Ghana Federation of the Disabled, HoTogbe Kwafai Paramount Chief, Ho Traditional Area.Emelia Akorfa Programme Head, Community Care, HoVery Rev. Mgsr. Thomas Anamoo Diocesan Administrator, Catholic Church, BolgaJoycelyn Akorfa Assembly Woman, HoBradford Tay Business man, HoDavid Aziagu Community Mobilizer, HoVery Rev. Fr. Moses Akebule Cathedral Administrator, Catholic Church, BolgaFelix Frederick Amega-Etego Executive Director, Centre for Child Development, BolgaEdward Alira Head Teacher, Balobia L/A Primary EID Unit, NavrongoHilda Asora Social Worker, BolgatangaPaulina Agomsitiba Social Worker, BolgatangaGrace Billah Social Worker, BolgatangaMary Zoesioni Social Worker, Bolgatanga48
  • List of Respondents-Independent Leaders / Specialists RESPONDENT FUNCTIONSabogu Ubald Education Coordinator, VSO, BolgaAchimpua Roger Teacher, BolgaDavid Azupago Director, Meta FoundationMercy Pwakra Municipal Social Welfare Officer, BolgatangaStephany Asido Special Educator, Balobia L/A Primary EID Unit, NavrongoTimothy Allou Special Education Coordinator, GES, BolgaPaul Rewom Special Educator, St. Charles Primary EID Unit, BolgatangaMary Magdalene Ayoma Head Teacher, St. Charles Primary EID Unit, BolgatangaFrancisca Ateere Deputy Director-Finance, GES, BolgatangaEbenezer Kye-Mensah Capacity Building Specialist, CHF InternationalRaymond Ategbi Okrofu Country Coordinator, Co2balance Ltd.Mark Nabiah Deputy Director-Finance, GES, BolgatangaAkagre Johakim Deputy Director, Ghana Education Service, BolgatangaAgnes Attagabe Director, Ghana Education Service, BolgatangaBen Yindol Deputy Director-Human Resources, GES, BolgatangaGodwin Gyasi Deputy Director, Mission of Hope for Society FoundationAmoah-Buanin Headmaster, St. Pauls’ Primary School, KintampoPastor James Anane-Domeh Pastor, Seventh Day Adventist Church, TechimanNana Obiri Yeboah Kokorko Chief, Bamim, TechimanAlfred Special Educator, School for the Deaf, BechemArmstrong Special Educator, School for the Deaf, BechemLinus Baaba Special Education Needs Coordinator, SunyaniChristiana Akum Yeri Headmaster, St. Pauls R/C Basic EID Unit, TechimanRafae K. Lantah Administrator, Hanukkah Children’s Home, TechimanHenrietta Nyarko Special Teacher, St. Pauls R/C Basic EID Unit, TechimanMartha Tiwaa Teacher, St. Pauls R/C Basic EID Unit, TechimanProsper Y. Dombul Teacher, St. Pauls R/C Basic EID Unit, TechimanThomas Patrick Otaah Deputy Director, SPED, AccraDavid Tettey Officer, SPED, AccraKofi Anokye Owusu - Darko Head, Consumer Banking Operations, Merchant Bank 49
  • 50 Data On Basic School Enrolment For Persons With Annex 4 Intellectual Disability YEAR No. SCHOOLS ESTABLISHED Enrolment as at 31st July 2011 MALE FEMALE TOTAL NO. OF TEACHER(S) Special Schools for Intellectual Disability 1 Dzorwulu Special School, Accra 1970 87 63 150 25 2 Garden City Special School, Kumasi 1977 132 54 186 32 3 Twin City Special School, Sekondi 1977 79 57 136 11 4 Castle Road Special School, Accra 1980 38 15 53 5 5 School for the Deaf EID Unit, Koforidua 1985 15 7 22 6 6 Three Kings Special School, Battor 1995 68 53 121 9 7 Shalom Special School, Nkoranza 1997 91 56 147 15 8 Community Inclusive Special School, Kpandu 1999 24 16 40 7 9 School for the Deaf (EMH Unit), Wa 2000 24 29 63 5 10 Yumba Special School, Tamale 2004 45 49 94 12 11 Community Special Vocational School, Deduako-Kumasi 2005 27 13 40 5 12 Gbi Kledzo Special School, Hohoe 2005 71 41 112 11 13 Catholic Special Vocational School, Fijai-Takoradi 2010 18 7 25 4 Private Schools for Intellectual Disability 1 New Horizon Special School, Accra 1972 92 43 135 2 Autism Awareness Care and Training Center, Accra 1998 29 5 34 20
  • YEAR No. SCHOOLS ESTABLISHED Enrolment as at 31st July 2011 MALE FEMALE TOTAL NO. OF TEACHER(S) Unit Schools for Intellectual Disability 1 Rev. Fr. John Basic School EID Unit, Winneba 2003 23 21 44 4 2 Madina Cluster 1 EID Unit, Accra 2004 8 7 15 2 3 GCD Basic School EID Unit, Akwatia 2005 9 11 20 2 4 St. Charles Primary EID Unit, Bolgatanga 2005 14 15 29 3 5 Kasseh DC Primary EID Unit, Ada 2006 0 2 2 1 6 Archangel R/C Basic EID Unit, Walewale-Suguru 2006 14 4 18 2 7 Presby Basic School EID Unit, Agona Swedru 2006 8 8 16 1 8 Yilo State Basic School EID Unit, Somanya 2006 7 6 13 2 9 Nana Akuamoah “A” Basic EID Unit, Nkawkaw 2006 19 16 35 3 10 St. Joseph Basic School EID Unit, Obuasi 2006 7 2 9 3 11 Methodist Basic School EID Unit, Goaso 2006 6 8 14 1 12 Methodist Basic EID Unit, Aboom-Cape Coast 2006 32 17 49 3 13 Balobia Integrated Primary School, Navrongo 2006 16 14 30 3 14 Methodist Basic EID Unit, Adukrom 2007 9 8 17 2 15 Methodist Basic School EID Unit, Effiduase 2007 27 18 45 3 16 Nyamaa Basic School EID Unit, Sunyani 2007 15 12 27 4 17 Dansoman 5 EID Unit, Accra 2007 16 10 26 5 18 Anglican Basic School EID Unit, Ho 2007 15 5 20 4 19 Chicago Basic School EID Unit, Keta 2007 18 5 23 4 20 Roman Catholic Primary EID Unit, Nadowli 2007 4 2 6 1 21 Rev. Hooper Basic School EID Unit, Tarkwa 2007 12 10 22 2 22 SDA Basic School EID Unit, Dakpema-Tamale 2008 6 7 13 2 23 OPASS Basic School EID Unit, Kukurantumi 2008 4 7 11 351 24 St. Pauls R/C Basic EID Unit, Techiman 2008 14 4 18 3 Special School List
  • 52
  • INCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA GHANAINCLUSION INCLUSION INCLUSION GHANA INCLUSION GHANA INCLUSION GHANA Design & Print: GHANA GHANA Danitess Printing and Publishing Ltd.INCLUSION INCLUSION INCLUSION Tel: 0302 231516 GHANA INCLUSION GHANA INCLUSION GHANA GHANA GHANA