Strengthening data and statistics on persons living with disabilities

The Disability Act 2003 defines disability as: physical, sensory, mental, or other impairment, including visual, hearing or physical disability, which has a substantial long-term adverse effect on a person’s ability to carry out usual day to day activities. Persons with Disabilities (PWDs) have specific needs that should be met to enable them carry out their day to day activities effectively thereby enhancing societal inclusivity. To promote inclusivity of PWDs, governments have rolled out various programmes to enhance their welfare by implementing various interventions in the economy ranging from education and training, work environment, tax structures, infrastructure to enhance mobility among others.  To track effectiveness and gaps in these interventions, countries need to collect and maintain updated databases on PWDs. Article 31 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2008) highlights the need for states to collect disaggregated data on PWDs and ensure that the data is treated with utmost confidentiality during collection, analysis and dissemination.

In Kenya, the Kenya National Bureau of Statistics (KNBS), the principal statistics agency of the government is at the core in spearheading the process of data collection on PWDs and processing. KNBS data on PWDs are captured in the Kenya Population and Housing Census (2009 and 2019), the Kenya Integrated Household Budget Survey (KIHBS, 2015/16) and surveys that specifically target PWDs such as the Kenya National Survey on Persons with Disabilities conducted in 2007. The National Council for Persons with Disabilities (NCPWD) also collects and maintains a database on PWDs, as it is the principal agency steering policy and implementation of PWDs’ programmes on education and training needs, social protection and welfare, and governance issues. The Ministry of Education collects and maintains data and information on learners with special needs in learning institutions. The National Council for Population and Development (NCPD) has an overall mandate of providing direction and management of population issues. NCPD coordinates the implementation of population and development of activities carried out by different stakeholders in Kenya. NCPD therefore has a big role in maintenance of data and statistics on PWDs. In 2007, NCPD undertook a joint survey with KNBS on the Kenya National Survey on People with Disabilities. The International Labour Organization (ILO) also compiles data on the labour dynamics and implications on PWDs in a bid to promote diversity and inclusivity in recruitment, job placement, renumeration and the work environment of PWDs. Apart from the above institutions, there are other Government agencies, private entities, local and international organizations that collect data on PWDs.

The Kenya National Survey for PWDs 2007 was unique in that it administered a series of questionnaires beginning with the Household Questionnaire which was administered to the household head and served the purpose of providing background information and screening on the specific type of disability in the household. Once identified through the Household Questionnaire, the individual questionnaire was administered and collected information on health and general well-being, income, employment, assistive devices among other individual PWDs’ characteristics. The Reproductive Health Questionnaire was also administered to an individual and sought information on reproductive healthcare. The Institutional Questionnaire was administered to heads of institutions serving PWDs such as special schools. Focused Group Discussion Questionnaire was administered to a group of 6-10 persons comprising of PWDs, teachers, service providers and community elders, to seek information on perceptions, attitudes and beliefs on disability, and sensitize PWDs on services available to them. The questions capturing data and information on Persons with Disabilities in Kenya Population and Housing Census (2009 and 2019) and Kenya Integrated Household Budget Survey (2015/16) differs from those in the Kenya National Survey for PWDs (2007) in that questions on disability in the latter were administered as a section of the population.  The nature of data collected was, however, similar as they focused on information on the nature of disability, and the socio-economic characteristics of the respondent. The 2007 survey was, however, more comprehensive and specific emphasis was on PWDs being asked a series of questions (Household level, individual, institutional, reproduction health and focused group discussions). Questions on disability in the 2007 survey, 2015/16 KIHBS and the 2009 Census were guided by World Health Organization classifications on disability and the Washington Group and tailored for the Kenyan context. The 2019 census, however fully utilized the Washington Group of questions methodology.

The Persons with Disabilities Act (2003) provides that for Kenya to plan accordingly for PWDs, NCPWD should collaborate with other Government agencies during national census to ensure that accurate data on PWDs are captured. Further, Article 54 of the Kenyan Constitution outlines the Bill of Rights for PWDs.  Sub-section 1 of Article 54 states that PWDs should be treated with dignity and respect, hence calls for utmost professionalism on officers collecting data to ensure that these rights are upheld and ensure that confidentially and respect is maintained during the data collection exercise, analysis and dissemination.

Further, data collected during census and surveys mainly capture socio-economic aspects of PWDs at the household level and at the institutional level. Some of the data captured  include: the nature of disability and the degree to which the impairment affects their day to day activities, labour force issues such as employment benefits, terms of work and work environment; the regional location of the respondent, gender, age, and whether one is aware of a beneficiary of any social protection initiatives. In Kenya, data collected by the various Government and other organizations is disaggregated based on gender, age cohorts and the nature of impairment, among other categories. This level of disaggregation is critical in planning for various programmes aimed at enhancing inclusivity and empowerment of PWDs. Disaggregation by age is critical as disability needs in the various age groups is different. Besides, needs of PWDs differ across age groups, hence the need for disaggregated data.

The needs of children and youth revolve around provision of education and training, nutrition and medication, middle aged persons and persons above 50 years have specific needs such as job placement, retention and remuneration, adaptable work environment, pension programmes differ among individuals hence the need for disability mainstreaming across all spheres of the economy. The KIHBS 2015/16 shows disparities in education participation among the various forms of impairment. For instance, PWDs with speech impairment neither had undergraduate nor postgraduate education. However, PWDs with physical impairment had higher participation rates in university education both at undergraduate and postgraduate levels. Low participation of PWDs in education means that they attain lower education levels and lower future incomes predisposing them to poverty. There is need therefore to interrogate this disparity and address it through policy supported with relevant data capture. There is also low participation of PWDs in health insurance; in the KIHBS 2015/16, only 11.96 per cent of PWDs were covered by a health insurance programme.

Despite various institutions such as NCPWD having various programmes aimed at improving the living standards of PWDs, including national funds for PWDs, cash transfers, legal advisory services, and job placement assistance; not all PWDs are currently benefitting from these programmes as they are not captured in the data base maintained by NCPWD or Kenya Revenue Authority for tax exemption interventions. Individual socio-economic aspects of PWDs are well documented in census and surveys but a gap exists at the institutional level. An institutional survey should be undertaken on work environment, compensation frameworks; and data on firms that manufacture and sell assistive devices for PWDs should also be collected and analyzed to monitor uptake and integration of technology on emerging trends in assistive devices. There is also need to collect data on accidents that occur in firms and lead one to be a PWD. Further surveys should collect data on the degree of institutional disability mainstreaming, i.e. have institutions implemented programmes that ensure that the institutional environment is inclusive and accessible for PWDs.

The United Nations Statistical Commission developed the Washington Group of questions in 2001, which are specifically designed to collect disaggregated data on PWDs. This methodology is preferred by various countries in collecting data on PWDs. This tool was initially developed for collecting PWD data for reporting purposes. However, its use has expanded to include identification of the number of persons benefitting from a given service or programme, hence an important driver towards inclusivity. A set of six questions is administered to individuals to self-report functional limitations against four responses. These questions are normally administered jointly with other set of questions that capture various aspects in a survey or a census. These set of questions are normally administered independently as a health survey and do not mention whether one has a disability. This way, the interviewer can remove the prejudice that may result if one asks direct questions. The Washington Group of questions, however, have a limitation as the set may not measure all aspects of difficulty that people may experience. This is attributed to the complexity of disability. The data collection tool should therefore be more detailed and incorporate specific questions on disability.


Box 1: The Washington Group Short Set of Questions on Disability The next questions ask about difficulties you may have doing certain activities because of a health problem:
1. Do you have difficulty seeing, even if wearing glasses?a. No – no difficultyb. Yes – some difficultyc. Yes – a lot of difficulty d. Cannot do at all4. Do you have difficulty remembering or concentrating?a. No – no difficultyb. Yes – some difficultyc. Yes – a lot of difficultyd. Cannot do at all
2. Do you have difficulty hearing, even if using a hearing aid? a. No- no difficultyb. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all5. Do you have difficulty (with self-care such as) washing all over or dressing?a. No – no difficultyb. Yes – some difficultyc. Yes – a lot of difficultyd. Cannot do at all
3. Do you have difficulty walking or climbing steps? a. No- no difficultyb. Yes – some difficultyc. Yes – a lot of difficultyd. Cannot do at all6. Using your usual (customary) language, do you have difficulty communicating, for example understanding or being understood? a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

Source: United Nations Statistical Commission (2001)

Other than the Washington Group of questions, statistical offices develop their own data collection tools to capture data on PWDs. Of significance in data collection exercise is maintenance of confidentiality and proper training and sensitization of research assistants and enumerators on disability etiquette to collect quality data and uphold the dignity of their respondents. Another key component in data collection is the definition of disability during data collection. In April 2006, The Irish Central Statistics Office undertook a census and had two questions on disability and 393,785 people reported disability (9.3% of the total population). Later in the year, a follow up survey was undertaken on a sample who reported a disability during the census in the National Disability Survey (NDS). The survey used a broader definition of disability by including more domains than in the census, e.g. the measure of severity. The NDS found that 11.5 per cent of private households reported disability yet they did not report it during the census. Extrapolating the findings of the NDS to the whole population found that the National Disability Index for Ireland to be 18.5 per cent (World Report on Disability, 2011). The Irish case therefore shows that the methodology adopted, and the number and type of questions asked when collecting data on PWDs is critical and affects the quality of the data collected.

Other challenges include: Limited communication between various stakeholders engaged in collecting and maintenance of the PWDs database; use of different methodologies when collecting data on PWDs, which leads to differences in the data sets and the level of disaggregation; the differences in the methodologies and definition of PWDs during data collection affects the comparability of data across the world. For instance, signatories of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) have a difficulty in monitoring the progress made in the implementation of the Convention’s resolutions as the indicators agreed vary across countries due to different methodologies and the definition of disability.  Non-frequent collection of data on PWDs has negative implications. For instance, the last comprehensive survey specifically targeting PWDs in Kenya was conducted in 2007. Longer periods in collecting data implies that policy makers lack an updated database to formulate a policy; rather they base their decisions on past data, which may not reflect the current situation. For instance, in March 2017, about 349,000 PWDs benefited from tax exemption initiatives. However, the Kenya Revenue Authority (KRA) notes that the number is still low, implying that many PWDs are being left out of this initiative either due to lack of sensitization or are not captured in the database. Data should be collected more frequently to ensure that up to date statistics are availed for proper policy making.

To address these challenges, institutions should communicate and collaborate when collecting and compiling data on PWDs, thereby creating synergy and ensure availability of timely, accurate and disaggregated data for policy making. Methodologies and data collection tools should also be harmonized to ensure consistency and comparability of data. There is also need to sensitize PWDs on the various incentives rolled out by the government to enhance their welfare, including cash transfers and tax incentives. This can be achieved through collaborations and maintenance of an updated database on PWDs by various institutions. The Government should also make provisions to allocate resources to facilitate frequent data collection programmes that specifically target PWDs. Further, an institutional survey should be undertaken to establish the degree to which firms have implemented disability mainstreaming programmes as outlined in the Disability Act, in a bid to foster inclusivity in the society.

Finally, timely data is key when designing and implementing policies on PWDs. NCPWD, KNBS and other stakeholders should endeavor to collect and maintain an up to date database on PWDs in Kenya for effective implementation of policy formulation, planning and programme implementation that seeks to foster inclusivity in the society. With up to date data, the welfare of PWDs would be improved. Government agencies and other stakeholders should also collaborate and share data especially on new cases of PWDs and their causes, including injuries, accidents or health complications.


Authors: Josphat Kipsaat and Dr Eldah Onsomu and Victor Mose

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