REPORTON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL    DISABILITY AND THEIR FA...
REPORTON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL    DISABILITY AND THEIR FA...
PROFILEI   nclusion Ghana (IG), a member of Inclusion International, is a network organisation working to reduce    stigma...
ii
FOREWORDD          espite numerous conferences and expert consultations on disability and human rights issues,          an...
iv
ACKNOWLEDGEMENTSM           any hearts and minds contributed in diverse ways in making this study a successful one. To all...
ACRONYMSCDC      Center for Disease Control and PreventionCDD      Centre for Democratic DevelopmentCWID     Children With...
TABLE OF CONTENTS      PROFILE...............................................................................................
5.3.5     Marriage and Family Life ..........................................................................................
LIST OF ANNEXESAnnex 1: Questionnaire - Parents/Caretakers…………………………………………………………36-42Annex 2: Questionnaire - Independent ...
EXECUTIVE SUMMARYI     nclusion Ghana (IG), a member of Inclusion International, is a network organisation founded in 2009...
1                                 INTRODUCTIONInclusion Ghana (IG), a member of Inclusion International,           continu...
IntroductionLaunched in 1996, it is one of the most ambitious pre-          PWID, there are often very limited vacancies a...
2        RESEARCH QUESTION AND OBJECTIVESAs the basis of the research the following research question was formulated:     ...
3                      DEFINITIONS AND LITERATUREIn this chapter we will give some definitions to some of the             ...
Definitions and Literaturemay go unrecognized, especially in mildly affected               Stigma attached to PWID and the...
4                                 METHODOLOGY4.1     Research SitesThe study was carried out in four regions namely: Brong...
Methodology                     Sample size of the research per region                                                    ...
Methodology4.2.2    Parents/Caretakers of PWID                                                                           ...
KEY FINDINGS:              5                A grim picture with glimmers of hope   5.1     Profile of Parent Respondents a...
Key Findings: A Grim Picture With Glimmers of Hope76% of the sample group parents and care takers were biological parents ...
Key Findings: A Grim Picture With Glimmers of Hope                       “My pregnancy lasted 11 months. Therefore my daug...
Key Findings: A Grim Picture With Glimmers of HopeFigure 6 below shows the responses of both parents and independent leade...
Key Findings: A Grim Picture With Glimmers of HopeThe main legislative instruments which have promoted the                ...
Key Findings: A Grim Picture With Glimmers of Hope                              How do you think PWID should be educated  ...
Key Findings: A Grim Picture With Glimmers of HopeTeachers also believe that amongst the group of people                  ...
Key Findings: A Grim Picture With Glimmers of Hopediagnoses the path way for the parents are usually confused. There is no...
Key Findings: A Grim Picture With Glimmers of HopeA parent narrated, “After a lot of effort, the first thing my husband di...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their fami...
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Report on the Level of Stigmatisation, Discrimination and Exclusion of Persons with Intellectual Disability and their families in Ghana

  1. 1. REPORTON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL DISABILITY AND THEIR FAMILIES IN GHANA JULY 2011
  2. 2. REPORTON THE LEVEL OF STIGMATIZATION, DISCRIMINATION AND EXCLUSION OF PERSONS WITH INTELLECTUAL DISABILITY AND THEIR FAMILIES IN GHANA JULY 2011
  3. 3. 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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  5. 5. 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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  7. 7. 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
  8. 8. 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
  9. 9. 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
  10. 10. 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
  11. 11. 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
  12. 12. 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
  13. 13. 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
  14. 14. 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
  15. 15. 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
  16. 16. 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
  17. 17. 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
  18. 18. 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
  19. 19. 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
  20. 20. 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
  21. 21. 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
  22. 22. 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
  23. 23. 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
  24. 24. 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
  25. 25. 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
  26. 26. 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
  27. 27. 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
  28. 28. 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
  29. 29. 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

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