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Journey of Hope (A Report on the Status of Persons with Disabilities in Pakistan and the Way Forward)

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5 6 8 10 10 12 14 14 14 15 15 16 16 17 17 18 19 19 20 21 21 22 23 25 28 29 30 31 32 33 34 34 35 37 38 39 40 40 41 42 42 43 44 44 45 46 48 48 49 49 50 50 51 51 51 51 51 52 52 52 53 53 54 54 54 54 55 55 55 56 56 58 58 58 58 58 b 59 59 6.7 Resource Mobilization 60 6.8 Provision of Suitable Facilities and Services 60 SECTION 7 ANNEXURES Annex I: Recommendations of Focus Group Discussion at 62 Peshawar (April 2, 2008) Annex II: Recommendations of Focus Group Discussion at 64 Lahore (April 5, 2008) Annex III: Recommendations of Focus Group Discussion at 67 Karachi (April 8, 2008) Annex IV: Recommendations of Focus Group Discussion at 70 Islamabad (April 12, 2008) Annex V: List of Participants of the Focus Group Discussion at 74 Peshawar (April 2, 2008) Annex VI: List of Participants of the Focus Group Discussion at 76 Lahore (April 5, 2008) Annex VII: List of Participants of the Focus Group Discussion at 79 Karachi (April 8, 2008) Annex VIII: List of Participants of the Focus Group Discussion at 81 Islamabad (April 12, 2008) Annex IX: References 83 PREFACE Research Report: Journey of Hope (A report on the status of persons with disabilities in Pakistan and the way forward) According to the 1998 Pakistan census, approximately 2.49 percent of the population has some form of disability. Translated in absolute numbers, nearly 3.2 million people in Pakistan are disabled out of which 1.37 million are females and 1.99 million males; while 37.2% fall in 0-14 age group. In Pakistan persons with disabilities are still subjected to conventional exclusion and extreme stigmatization while globally there is a greater acknowledgement that most persons with disabilities have the potential to become responsible and self reliant members of society. It is in this context that this research report has been prepared under a Programme of The Aga Khan Council for Pakistan for bringing about positive changes in the social attitudes toward persons with disabilities and paving the way for an equal and inclusive world. The Programme—one of a series of several different thematic programmes being held to foster awareness of modern-day issues facing the Ummah—is being held during the year that commemorates the Golden Jubilee of the Imamat of His Highness the Aga Khan. It is expected that this programme, the Journey of Hope, will inform key publics, lead to greater awareness, and result in concrete steps to improve the opportunities for persons with disabilities in the educational, economic, social and cultural domains of their lives. The report has been produced in collaboration with the National Commission for Social Welfare of the Government of Pakistan and with input from major institutions and organisations working with people with all forms of disabilities. The draft report was peer reviewed at four Focus Group Discussions organized at Peshawar, Lahore, Karachi and Islamabad during April 2008, with over one hundred such institutions participating. The report situates the existing status of persons with disabilities and the organizations working with them, analyses existing policies and laws, highlights the challenges faced by both these individuals as well as these organizations, and gives concrete suggestions for addressing the stated challenges. The most important and immediate outcome of the report is the launch of a Network named ‘”Network of Organizations Working for People with Disabilities, Pakistan”, (NOWPD,P). Participants of the four Focus Group Discussions cited the absence of such a network as a major impediment in their efforts to foster an enabling policy environment addressing the needs of persons with disabilities. Hence, it is expected that the Network would facilitate these organizations in this regard. The report would not have been completed in its present form without the hard work of several institutions and individuals who deserve special mention. The whole exercise was led by a special Task Force of the Aga Khan Council for Pakistan. Additionally, lead authors were Malik Mumtaz Hussain, Rana Mukhtar Ahmad and Syed Izhar Hussain under the guidance of Rais Jahangir Ahmad, Chairman, National Council for Social Welfare. Gul Najam Jamy of Aga Khan Foundation (Pakistan) provided support through the conduct of Focus Group Discussions and liaison with various institutions for the timely completion of the report. Habi Shariff of the Government of Alberta and Keith Turton from Mental Health First Aid Canada, Alberta Mental Board, Canada undertook a detailed review of the report in a volunteer capacity. I anticipate that this report will lead to several new initiatives. On its part, the Aga Khan Council for Pakistan is committed to take forward some key actions, foremost among them being the launch of Network. Iqbal . S. Walji President His Highness the Aga Khan Council for Pakistan Acronyms ADL Activities of Daily Living AIDS Acquired Immune Deficiency Syndrome AIOU Allama Iqbal Open University AJK Azad Jammu & Kashmir AMC Army Medical Corps Association for Rehabilitation of Physically ARPD Handicapped CBO Community Based Organisation CBR Community Based Rehabilitation CWDs Children with Disabilities DGSE Directorate General of Special Education DHQ District Head Quarters DISTAT Disability Statistics Database DPOs Disabled Persons Organizations EFA Education for All FANA Federally Administered Northern Areas FBS Federal Bureau of Statistics GOP Government of Pakistan HHD High Human Development HI Hearing Impairment HQ Head Quarter ICD International Classification of Diseases ICT Islamabad Capital Territory International Classification of Impairments, ICIHD Disabilities and Handicaps IYDP International Year of Disabled Persons LABAD Lahore Business Association of Disabled LCCI Lahore Chamber of Commerce and Industry LHD Low Human Development LHWs Lady Health Workers MHD Medium Human Development MR Mental Retardation MDGs Millennium Development Goals MTDF Medium Term Development Framework 2001-10 National Council for Rehabilitation of Disabled NCRDP Persons NGO Non-Governmental Organization NIH National Institute for Handicapped NIRM National Institute for Rehabilitation Medicine NPA National Plan of Action NRSP National Rural Support Programme NWFP North West Frontier Province PCO Pakistan Census Organization Provincial Council for Rehabilitation of Disabled PCRDP Persons PH Physical Handicap PHC Primary Health Care PIDE Pakistan Institute of Development Economic PRSP Provincial Rural Support Programme PWDs Persons With Disabilities SE Special Education SED Special Education Department SMEDA Small Medium Enterprises Development Agency ST Scheduled Tribe STD Sexually Transmitted Disease UNSO United National Statistical Office VH Visual Handicap VR Vocational Rehabilitation Vocational Rehabilitation Employment For VREDP Disabled Persons WHO World Health Organization Executive Summary This report is based on secondary data available in the country on the prevalence of disability, challenges faced by persons with disabilities (PWD) and organizations working for them and possible initiatives to address these challenges. The report was finalized through a series of focus group discussions at Peshawar, Lahore, Karachi and Islamabad. Conceptual Framework This section of the report addresses the conceptual framework including definitions, classification and causes of disabilities. The ICIDH framework is technically termed as a bio- psychosocial model. It gives a very broad spectrum conceptualization of disability and reflects a paradigm shift from medical model to, in common parlance, a socio-economic model. It describes three important components that constitute disability which include (i) health condition (disease/disorder), (ii) personal activities and (iii) participation in society and it also takes into account the environmental, personal and institutional factors. Magnitude of the Problem in Pakistan This section focuses on prevalence of disability. In Pakistan, despite the evidence of inclusion of disability in the national census, statistics on disability suffer from inadequacies such as lack of standardized definitions. The WHO estimate of disability for the developing countries was found to be 10% of the total population. These were, however, not confirmed during the survey of disability of twin cities of Rawalpindi / Islamabad carried out by the Directorate General of Special Education during 1985-86. The Pakistan Census Organization in its census carried out in 1998 estimated a population of PWDs 3.293 million against the total population of 132.352 million that constitutes 2.49% of the population. Development of Special Education Programmes in Pakistan This section provides a situation analysis of existing education, training and rehabilitation services and facilities for PWDs and students enrolment. There were only few institutions at the time of independence which reached up to 531 units in 2006. A sharp rise in the pace of development of institutions for PWDs was witnessed after the observance of International Year of the Disabled Persons (IYDP), 1981 which was followed by the establishment of Directorate General of Special Education in 1985. A variety of institutions during the decade 1980-1990 were established including the construction of purpose built premises. The existing institutions are catering to the educational needs of only 4% of the children of school going age. The data transpires that there is an acute shortage of vocational training facilities for PWDs. Rural areas with nearly 3/4th of the population are largely
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