gender stereotyped with females' receiving handcraft training and male vocational training. Technical training as computer, software and hardware maintenance ...
Socio Economic Status of People with Disabilities in Sudan
ACTION ON DISABILITY AND DEVELOPMENT (ADD.INT) Sudan Program SUP & AHFAD UNIVERSITY FOR WOMEN
Prepared by: Dr. Shahla Eltayeb (PHD) and Dr. Dina Sami Khalifa (MD)
4/28/2013
Acknowledgment
Gratitude is extended to members of the Sudanese unions of people with disabilities at National and State levels who worked vigorously to make this survey an achievable task. Also gratiutde to Fedral and State goverment authorties. To ADD Int. Sudan Programme staff and AUW research team who cooperated together to meet the deliverables on time To EU which supported the current project: Building the Capacities of Disability Rights Movement in Sudan for inclusive participation in development Lastly to people living with disability in Sudan who participated in this research forsaking all transportation, environmental and economical hardship, your strengths humble us. Copy rights © No parts of this report should be copied or duplicated without written consent of authors and ADD.INT
SES.PWD 2
CONTENTS Executive Summary ............................................................................................................ 4 Part i: Introduction ............................................................................................................. 6 1.1 disability in Sudan ..................................................................................................................................................... 7 1.2. Socio Economic status measurement ............................................................................................................. 8 1.3. Services available for people with disabilities in Sudan ....................................................................... 9 1.4 Disability Act in Sudan.......................................................................................................................................... 10
part ii: Methodology ......................................................................................................... 13 2.1 Design: .......................................................................................................................................................................... 13 2.2 Setting & Study population ................................................................................................................................ 13 2.3 Methods of Data collection& Data Collectors ........................................................................................... 14 2.4 Sample size & sampling methodology: ........................................................................................................ 14
part iii: Results .................................................................................................................. 16 3.1 Sample Disability charctristics......................................................................................................................... 16 3.2 generalcharacteristics of surveyed sample: .............................................................................................. 18 3.3 Social status................................................................................................................................................................ 21 3.4 Economic status (occupation & income): ................................................................................................... 26 3.5 Health Services and assistive Devices: ......................................................................................................... 29 3.6 Activity Limitations................................................................................................................................................ 31
part iv. Conclusion and Recommendations ...................................................................... 32 4.1 Education: ................................................................................................................................................................... 32 4.2 Training ........................................................................................................................................................................ 33 4.3 Employment: ............................................................................................................................................................. 34 4.4 Health: ........................................................................................................................................................................... 35 4.5 Rehabilitation: .......................................................................................................................................................... 36 Conclusion .......................................................................................................................................................................... 37 Scope of this research and recommendations for future research projects: ................................... 38
SES.PWD 3
EXECUTIVE SUMMARY Background Sudan is one of the poorest countries in the world, despite the overall GDP growth averaged about 5.4 percent from 2008-2010, of approximately 33 million people (according to the last census in 2008) the majority of the population 48% are living below the poverty line (2010 UNDP report on Sudan). Disability and socioeconomic status are dynamic and intricately linked phenomena. In developed countries, a large body of empirical research shows that people with disabilities experience inter alia comparatively lower educational attainment, and higher unemployment rates, worse living conditions, and higher poverty rate. According to the 2008 Sudan national census the prevalence rate of disability is 5% with rural ratio higher than urban areas. ADD.INT as an active organization working in Sudan for the last two decades in promoting people with disability rights and access to service; the ADD aims to contribute by this study to the empirical research on social and economic conditions of people with disabilities in seven states in Sudan. Terms f Reference
This study attempts to assess the socioeconomic status of people with disability in seven Sudanese states. To identify economical status (source and value of income, ownership and households positions). To identify employment status (occupation type, causes of unemployment, training received and training needs) to assess health status and assistive device usage of disabled individuals surveyed.
This research is relevant for several reasons. First, it contributes to a - currently small - body of empirical evidence on the economic status of people with disabilities in Sudan. Second, by providing a baseline data on the economic well-being and the poverty status of people with disabilities and their households in 2013, it can inform national disability policies. Finally, this study can also inform future data and research efforts on disability in Sudan. Methods
This is a cross sectional survey, describes the socio economic well-being of people with disabilities along several dimensions. No conclusions about the causality between disability and socioeconomic status should be drawn based on the descriptive statistics presented in this study. Disabled registered in (disabled people organization DPOs) in seven states in Sudan (Khartoum. Gazira, Gadrif, Kassala, Red Sea, River Nile and South Darfur) were interviewed between October to December 2012; using 30 items questionnaire covering demographic, disability status, social activities and economic status. The data was collected by trained disabled individuals from the different disability unions. The analysis used percentages and significant correlation.
SES.PWD 4
Result 1130 individuals with disabilities participated in the survey, 68% of the sample was men and 70% of the sample was of age groups between 20 to 49 years. 40% were physically disabled, 31% blind and 28% deaf. 50% were disabled before age five due to childhood disease. Those who were disabled after age 20 attributed the cause to road accidents or chronic illness (diabetes). Educational levels were low 66% of the sample has educational level bellow secondary. And only 17% have a university degree majority are females and in the capital city Khartoum. Overall there is gab between the chronological age and educational level and higher dropout rates among male participants. The marital status varied 64% of the females were unmarried though they are in reproductive age; the average numbers of person per family was 4 to 6. Although several bodies governmental and nongovernmental are working in training PWD still 66% of the sample did not receive any training. Training packages received are concentrated in Khartoum and Gazira states and are gender stereotyped with females' receiving handcraft training and male vocational training. Technical training as computer, software and hardware maintenance is received by only 9% majority males. International organizations contributed to 58% of the trainings offered to the disabled. 53% of the sample are unemployed, 40% attributed their unemployment to lack of training and qualification. Significant association found between higher educational level and better job opportunities special in governmental jobs. The overall income is very low below 500SDG/month and still 42% indicated no regular monthly income. A triangular relation was identified whereby PWD have low level of education; low income and majority are females Health status indicated that 60% have a health insurance nevertheless only 14% are actually receiving some form of medical management related to their disability. And 45% purchase their assistive device (cane, hearing aid) by themselves and 35% acquired the devices through assistance from international NGOs. Social stigma and prejudice were not significantly observed as majority of the sample 60% did not perceive any obstacles that hinder their social participation for the exception of environmental barriers (transportation and buildings). Conclusion Future intervention program and training opportunities should cater for the most vulnerable from the disabled, females and elderly and those from rural areas. Sudanese PWD will continue to live in a vicious cycle of lower SES as long as they are unsupported, uneducated and unemployed and as long as they are incapable of claiming their rights and privileges. Concrete commitment from the government, international and national authorities is seriously needed to brake this cycle. By doing so, a new community of disabled people will be created whom are empowered, productive and can, in fact, contribute positively towards improving the country’s economy.
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ACRONYM LIST ADD.INT: Action on Disability and Development. International AUW: Ahfad University for Women PWD: People with Disabilities DPOs: Disabled People Organizations CWD: Children with Disablities SES: Socio Economic Status
DPI: Disabled People's International FMoE: Federal Ministry of Education FMoH: Federal Ministry of Health GDP: Gross Domestic Product U.S: United States EU: European Union
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PART I : INTROD UCTION Sudan is one of the poorest countries in the world, despite the overall GDP growth averaged about 5.4 percent from 2008-2010, of approximately 33 million people (according to the last census in 2008) the majority of the population 48% are living below the poverty line (2010 UNDP report on Sudan). The aim of this study is to investigate the socio-economic status of persons living with disabilities in seven states in Sudan. To assess the economical (source and value of income, ownership and households positions) of disabled individuals surveyed. To identify employment status (occupation type, factors of unemployment, training received and training needs) and to assess health status and assistive device usage of disabled individuals surveyed. The findings will assist future intervention plans to assist and train people with disabilities (PWD) in Sudan The report is divided into Part I: contextual background of disability in Sudan, laws and legislation related to persons with disabilities unions in Sudan. Part II: the survey methodology. Part III the main result and graphs. Part IV: recommendations. 1.1 DISABILITY IN SUDAN Different models have been developed to define disability 1. In this study, disability is understood following the International Classification of Functioning, Disability and Health (ICF or International Classification hereafter) developed by WHO in 2001. According to the ICF, “disability is an umbrella term for impairments, activity limitations and participation restrictions. It denotes the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors)” (WHO 2001, p. 213) According to the 2008 Sudan national census the prevalence rate of disability is 5% with rural ratio higher than urban areas. The WHO, defines disability as any restriction or lack of ability (resulting from an impairment) to perform activity in manner or within the range considered normal for a human being (WHO 2007). Impairment (any loss of or abnormality of psychological, physiological, or anatomical structure or function), disability and handicap are all words which we use to describe a physical, sensory, or mental limitations that a
1Detailed
presentations of these models are available in Altman (2001) and Mitra (2006)
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person may have. Such a limitation means the reduction of a person ability to take part fully in societal activities such as work, recreation and others. The 2008 population census, carried out in the Northern States of Sudan included, for the first time questions on disability. This paved the way for highlighting the needs of these forgotten and marginalized groups. According to this census about 5% of the populations are disabled, with some variations among the Northern States. With males representing 53% and 47% are individuals in rural areas. The distribution varies per state Sinaar and Gadrif have the highest numbers. Sudan’s Population Census (2008) indicated that 38% of persons with disability aged six are enrolled in schools, while 15% have previously attended school at some point; 41% have never attended schools. Only 50% of the total numbers of persons with disability (working age) are employed.
1.2. SOCIO ECONOMIC STATUS MEASUREMENT Socioeconomic status (SES) is often measured as a combination of education, income and occupation. It is commonly conceptualized as the social standing or class of an individual or group. When viewed through a social class lens, privilege, power and control are emphasized. Furthermore, an examination of SES as a gradient or continuous variable reveals inequities in access to and distribution of resources. SES is relevant to all realms of behavioral and social science, including research, practice, education and advocacy. 2 While different groups of vulnerable people present some similar socioeconomic challenges. People with disabilities are among the most vulnerable and marginalized groups of any population. They are often excluded from mainstream social, economic and health services, lacking educational opportunities to meet their full potential (Loeb, Eide3, Jelsma, Ka'Toni, & Maart, 2008).
2 Mitra And Sambamoorthi (2011) Disability And Poverty In Developing Countries: A Snapshot From The World Health Survey: S P D I S C U S S I O N Pa P E R No. 1109 3 Loeb Mitchell , Eide Arne Henning , Jelsma J , Ka'Toni M , Maart S (2008). Disability and Society 23, 4, 311-321.
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Disability barriers, whether be it physical or social, contribute to discrepancies in wealth and socioeconomic opportunities for those disabled and their families. Socioeconomic status can be measured using a variety of factors, including income, race, sex, disability status, or size of business. Reaching members of disadvantaged socioeconomic groups may be a requirement or recommendation of federal or state funding in construction or procurement. In medical research, it is common practice to ascertain the effect of socioeconomic status on outcomes. 1.3. SERVICES AVAILABLE FOR PEOPLE WITH DISABILITIES IN SUDAN 1.3.1 Disabled educational service in Sudan The history of educational services for people with disability (special groups) began early in the sixties by the establishment of the Noor Institute for the Education of the Blind, which was established by the voluntary association of charitable Sudanese headed Dr. Bagir Ibrahim in Khartoum North, it started collecting the blind and facilitate their gathering; in 1967 became the elementary school. Currently the institute teach blind children till secondary level using "Braille". The deaf education began in 1970 by The U.S. subsidiary of charitable organizations to establishment the Sudanese Association for Deaf Education 1973. Recently ADD.INT organized, in cooperation with the federal mainstay of education (FMoE) seminars that discussed the situation of the prevailing situations affecting education of the children with disability CWD. The seminar resulted in establishment of the “Special Education Department within the FMoE and state ministries of education, which are currently function as supportive institutions for inclusive education for the CWD. With ADD support, SNUD had initiated the compilation and editing of a Unified Sudanese Sign Language Manual for the first time in Sudan in 2009, their intensified efforts of lobbying the Ministries of Finance and Social Affairs for support were fruitful. With ADD support the SNUB conducted Braille courses, summer classes for school students, catch up programe for dropout students in their National Center for the Rehabilitation of the Blind.
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1.4 DISABILITY ACT IN SUDAN The Ministry of Social Welfare (MoSW) is the main governmental agency working with the disabled. However several national and international organizations including ADD are working hand in hand to lobby and ensure that PWD acts and legislations are included and PWD are represented. The ADD, DBOs and Ministry of Social Welfare assesses and monitor the achievements that have been in the field of disability, is also conducted capacity building, which includes training the disabled, and also work on coordination and networking approaching relevant include concerted all efforts at the official level and private, civil society organizations and private working in the field of disability. This has lead to the development of the National Council for the Disabled in 2010 headed by the Minister and members of the disabled 50% and
the
rest
experts,
brokers
and
activists.
1.4.1 Polices and Legislation The MoSW and its national partners have different roles related to policies, laws and plans which has undertaken the update and amendment of the 1984 law to Disabilities Act, which was issued and signed by the President of the Sudan in 2009 under the Ministry of Social Welfare. The Sudan disability policy document defines disability as “individuals who are affected by functional disability being motor, sensory or mentally, occurring from birth or as a result of an accident which permanently or partially affected individual’s natural/normal life pattern”. The 16 pages document is divided into five sections including a situational analysis followed by policy objectives, and the third and fourth part covered the policy statement including its principles and action areas; the last section covered the proposed five year national strategy for disability. Overall the document is of generalized nature i.e. addressing various issues and core concepts; however with limited emphasis on action areas or monitoring mechanism. Furthermore the document dose not distinguish between the various types, target and needs of the disabled population and use the term disabled as one unit MacLachlan et al. (2012).
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1.4.2 The ratification of the UN Convention on the Rights of Persons with Disabilities: ADD in collaboration with the Sudanese National Unions of the Deaf, Blind and Physically Disabled has initiated a national campaign for ratification of the UNCRPD. This campaign included: seminars, forums, tribunes, newspaper articles, radio and TV programs, posters and leaflets, booklets, brochures, meetings with parliamentarians and decision makers, open sessions in addition to meetings with some key persons including federal ministers. ADD supports this campaign mainly because it is a complimentary possibility to enhance advocacy and influence on disability rights issue. 1.4.3 ADD Role with PWD in Sudan Action on Disability and Development (ADD); started working with Disabled People's Organizations (DPOs) in Sudan since early 1990s. Since then ADD has been supporting DPOs to address the disabling environment facing them. There was insufficient capacity to implement the activities at national level, and so ADD started to work with state DPOs. ADD has demonstrated its effectiveness over the years by empowering disabled people directly through supporting DPOs to become effective advocates for disability rights through financial and technical inputs. The number of partner organisations supported by ADD has grown to the branches of Disabled People Unions of (Physically Disabled, Blind and Deaf) in seven states (Khartoum, Kasala, Gedarif, Red Sea, Gezira, River Nile (Central and East Sudan), Darfur (West Sudan). ADD has extensive experience of working with DPOs who have adopted the social model of disability. The social model of disability does not focus on the impairment itself, as the medical model does, preferring to address and challenge the external factors that prevent a disabled person from enjoying the same rights to food, shelter, medical and education services etc, as non-disabled people.
This approach is similar to that taken by the
international disability movement Disabled People's International (DPI), assured in the UN Convention and is a view shared by the EU who also sees disability as human rights issue. ADD aims to add value to disabled people’s groups, organisations and networks by supporting them to build their organisational capacity and to be effective advocates who are able to hold Governments, service providers and communities to account. SES.PWD 11
ADD works towards strengthening and empowering DPOs to fully participate and interact in the social, political and economic life creating an inclusive society that cater for their rights. The programme focused to address the main issues of discrimination, equal rights and access to common rights for all disabled people, raising the levels of education and literacy amongst DPO members
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PART II: METHODOLOGY 2.1 DESIGN: This was a cross sectional study across a sample of registered PWD in the seven targeted states in Sudan from October to February 2013.
The flow chart in figure 1.1 summarises the major stages of the survey Development of survey instrument Population identified Sampling frame Training of Data collectors Data collection
Data analysis Report writting
2.2 SETTING & STUDY POPULATION The survey was conducted among PWD of both sexes and all ages registered in Unions of Disabled across seven states in Sudan. It is estimated that PWD registered in these unions constitute 60% of total PWD, with variations, across the states. Registration was highest in Khartoum states (11000) and lowest in River Nile state (3000). The seven unions and the seven states are: Gazira, Kassala, S. Darfour, Gadarif, Khartoum, River Nile, Red See.
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The following 7 states form the 17 states were selected.
Al Jazirah (7) South Darfur (Ganoub Darfur) (11) Kassala (5) Al Qadarif (6) Red Sea (Al Bahr al Ahmar) (26) Khartoum (3) River Nile (Nahr an Nil) (4)
2.3 METHODS OF DATA COLLECTION& DATA COLLECTORS This survey collected data from the disabled by the disabled. 140 union members received three days training in research methods and data collection in their state. The trained members of the different unions under supervision of team leaders from Ahfad University and ADD constituted the interviewers in the survey. Each state team received three days training after which data was collected in three days. The questionnaire was designed by AUW team subjected to discussion with ADD and the partners Sudanese National Unions and the National Disability Council. The final endorsed version contained 30 questions spread over four sections covering and evaluating the survey’s objectives. The questionnaire contained open and closed questions, and was tested among a group of PWD.
2.4 SAMPLE SIZE & SAMPLING METHODOLOGY: A Sample size was calculated using the standard sample size formula for cross sectional design. The minimum sample size calculated according to a defined level of acceptable error and design effect was 1300 PWD. Sampling of the sample size was according to probability proportional to size (PPS) of registered PWD in each state. States containing highest number of registered PWD contributed more to the final sample. Sampling within each state was done by (simple random sampling out of lists of registered PWD within the state union, targeted sample were approached by telephone and SES.PWD 14
invited to participate, those who did not respond were replaced from the same list. Data was collected between November and December 2012. 2.4.1 Sampling representation per state: State
Total DPOs
Number of sample
members Khartoum
8475
300
Gazira
6989
300
River Nile
1704
100
Kasala
5804
100
Gadarif
2803
116
Red Sea
2969
108
DarfurSouth
4680
106
Total Darfur
33424
1130
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PART III: RESULTS The result section explores the sample disability status including types, causes, duration and assistive devices used. Followed by the general demographic characteristics of the sample. The Social status of the sample including education, training, occupation and residence is presented. The economical status including income and ownership lastly the social, health and physical barriers are explored. 3.1 SAMPLE DISABILITY CHARCTRISTICS Physical disability constitute the highest rates with 41%, compared to 31% are blind (56% of which are suffering from total blindness) and 28% are deaf. The remaining 1% was suffering from combined disabilities. There was minor state variation among the different disability types. Khartoum state has the majority of the blind & deaf (29% & 30% respectively). Gazira state host 33% of the total physically disabled in the sample. There was non significant variation in gender distribution per disability type. These results are in line with the general population census 2008 that indicated that the highest rates of disability are the physically disabled.
Fig.1. Disability Type Distributed By Gender Male 41%
Female
37% 32% 26%
0.30%
32% 30%
1%
Combined Disability
Physical Disability
Deaf
Blind
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Looking into disability type distributed by age it indicated that the younger age group (1519) have 48% deaf (due to heredity and measles)compared to 48% blind among the older group 65 to 79. The remaining age groups physical disability was the highest. Fig.2. Time of Disability
At birth
%23
%33
At age 1 to 5 years At age 6 to 10 years
%4
At age 11to15 years
%8
At age 16 to 20 years %10
At age 21
