Malawi Standard (Blantyre)

16 October 2004

Malawi: People With Disabilities Need Emotional Support Than Money

Blantyre — Research finding by the Federation of the disability Organisation in Malawi (Fedoma) with support from the International organisations on the living condition of people with disabilities has concluded that most disabled persons need emotional support than money.

A total of 1521 households with at least one disabled family member and 1537 households without disabled members were sampled in 157 enumeration areas.

An assessment of various forms of assistance that may be needed by individuals with disabilities in performing daily life activities showed that a large majority of respondents claimed to need emotional support, surpassing all other types of assistance required. Economic support, or assistance with finances, was the second most often mentioned form of assistance needed. It is interesting to note that, within the family, the role of the individual with a disability does not appear to be much affected by their disability status.

The report entitled 'Living Conditions among People with Activity Limitations in Malawi. A National Representative Study' says that it was found that need for emotional support surpassed economic support when people with disability were asked for what type of assistance that was needed in their daily life.

"This finding replicates the results from the two previous studies. This is important to bear in mind when developing services for people with disabilities, as emotional needs will more readily be neglected when there is so much to do in terms of practical help. Developing mental health support programs at the local community level is very relevant in this regard," the report reads in part.

According to the report, this is not the first survey of its kind to be conducted in Southern Africa, studies such as those that have been carried out in Namibia, Zimbabwe and now in Malawi.

"These studies are very important as they provide a more precise indication of the true living conditions of people with disabilities than has previously been available. Furthermore, the survey in Malawi, together with the earlier Awareness Building Campaign, has aided in sensitising society to the plight of people with disabilities and the importance of their inclusion in all developmental activities," says the report.

People with disabilities have played an active role in all aspects of this study. While the Centre for Social Research (CSR) at the University of Malawi had accepted the responsibility for overseeing all research aspects of the study, FEDOMA had maintained responsibility for project management at the local level. People with disabilities have been equal partners in the design process, in data collection and supervision, and in the field have proven to be as capable as their non-disabled counterparts. This is a very positive development.

The study observed that it is common knowledge that people with disabilities in the SADC Region and indeed in the whole of Africa are experiencing problems and difficulties in carrying out their daily activities and in their ability to fully participate in society. People with disabilities experience barriers that may be physical, in the form of reduced accessibility to local services (including schools, hospitals and the workplace), and may be social, in the form of discrimination and negative attitudes in society at large. These are problems that can be avoided, or at least reduced, if the development policies of governments, Donor Organisations and Development Agencies were targeted towards inclusion and addressing the specific needs of people with disabilities in society.

It also noted that lack of clear data in form of statistics on actual situation of persons with disabilities in our respective countries.

"When the data is collected, emphasis must be placed on utilising the results of research to not only raise awareness but also to catalyse, to urge all those who have something to do with disability including governments and other relevant institutions to commit themselves, to advocate towards bringing about changes in issues that affect the lives of people with disabilities in Malawi and indeed in the whole of the Southern Africa Region," the report requests.

The study on living conditions among people with disabilities in Malawi is the result of an international co-operation between Southern Africa Federation of the Disabled (SAFOD), Federation of Disability Organisations in Malawi (FEDOMA), Norwegian Federation of Organisations of Disabled People (FFO), University of Malawi (Centre for Social Research), and SINTEF Health Research. The study has been funded by the Atlas Alliance on behalf of Norwegian Agency for Development Co-operation (NORAD). In addition to the study itself, a capacity building component has been an important part of the collaboration.

Forming part of a Regional initiative to establish baseline data on living conditions among people with disabilities in Southern Africa, the study in Malawi is the third to be published. The report is designed to provide both an overview of the situation for people with disabilities in Malawi today and a comparison to the situation for those of the population without disabilities.

The report also introduces to Malawi, the conceptual approach of assessing disability as limitations in activities of daily living and restrictions in social participation rather than by means of physical or mental impairment.

The study design was developed in close collaboration with a broad range of stakeholders. Organisations of people with disabilities and individuals with disabilities have played a particularly active role during development of the design and the collection of data. Based on previous studies in the Region, the research instrument comprises a study on living conditions among households with and without disabled members, a screening instrument (for disability), a section with specific questions to individuals with disabilities, and a matrix that represents an operationalisation of core concepts from the International Classification of Functioning, Disability and Health (ICF).

The report however did not cover Likoma Island for logistical reasons.A comparison with results from the Namibian and Zimbabwean studies is included for some major indicators. In general, the patterns observed (both similarities and differences) between people with and without disabilities demonstrated in Namibia and Zimbabwe were replicated in Malawi.

The study design allows for the following types of comparisons between individuals with and without disabilities, and between households with and without disabled family members. With regards to demographics, households with disabled members were found to have higher mean age and they were larger, having more children than did control households. These and other socio-demographic differences may be the result of certain coping mechanisms that have been established in households with disabled members, mechanisms intended to cater particularly to the increased care duties found in these households.

Services needed

Among services available to persons with disabilities, health services and traditional healers were found to be available for the majority of those with disabilities, with about 60% of those who needed these particular services having actually received them. At the other end of the scale, the most noticeable shortcomings with regards to service provision were vocational training, welfare services, assistive device services and counseling services. Vocational training and welfare services were received by about 5% of those who claimed that they needed them.

While an overview of accessibility to different services, facilities and institutions gives a mixed picture, it is clear that certain of these facilities are not generally accessible to all. Hotels and banks are accessible to less than 10% of individuals with disabilities.

According to the report, places of worship, health care clinics, hospitals, shops and public transport are on the other hand reported to be accessible by the majority of those with disabilities (over two-thirds). The most notable shortcomings are schools, accessible to only 20% and the workplace, accessible to only 26% of the disabled population. The mixed picture demonstrated with regards to accessibility indicates that the potential exists for improving accessibility for people with disabilities.

Assistive devices are used by less than one fifth (17%) of those surveyed with disabilities. It is interesting to note that this figure is similar to the corresponding figure for Namibia (18%) but slightly lower than that reported for Zimbabwe (26%). It is further shown that most of the devices in use are functioning well (64%). Depending on the type of device in use, between 35 and 65% have received instructions on their use. With respect to maintenance, about 7% of devices are maintained through government services, about 40% assumed responsibility themselves (or through their families) and another 40% claimed that their device was either not maintained or that they couldn't afford maintenance/repairs.

As was found in Namibia, a higher share of devices is supplied by private sources in Malawi, reflecting a stronger tradition of privately initiated and organised services for individuals with disabilities in those countries. In contrast, the supply of devices in Zimbabwe is more balanced between private and public sources.

Certain elements of the information collected during the survey can be used to define the severity of a person's situation with respect to their disability. For example, data on both an individual's needs for services and the daily activities that a person may need help in accomplishing may be used for this purpose. Simple scores are constructed by adding up the number of services one needs or the number of daily tasks one needs help in accomplishing, to indicate the severity of a person's situation. The more services needed: the worse off that person is; or the more help needed in doing daily tasks: the worse off that person is.

A matrix was developed and applied to map an individual's activity limitations and participation restrictions according to different domains (sensory experiences, basic learning and applying knowledge, communication, mobility, self care, domestic life, interpersonal behaviours, major life areas and community, social and civic life).

For each of the 44 activities listed under these 9 domains, the degree to which an individual is capable of carrying out that activity without assistance (activity limitations) is recorded on a scale from (0) no difficulty to (4) unable to carry out the activity. In the same manner the person's performance in their current environment (participation restrictions) is also recorded on a scale from (0) no problem to (4) unable to perform the activity. By adding up an individual's responses to each of the 44 items a single activity limitation score and a single participation restriction score is developed.

These four severity scores were assessed according to different parameters. It was found that individuals with mental/emotional impairments needed more help in their daily activities than did those in other disability categories. This group also reported more activity limitations and restrictions in social participation than others. Individuals with mental/emotional problems thus reported that they experience more barriers to full participation in society. These results mirror those found in the surveys carried out in Zimbabwe and Namibia.

Activity limitation and participation restriction scores are similar for both sexes. These scores are not meant to be gender dependent - or to differentiate between genders - but to classify according to ability to carry out/perform activities under different circumstances. In contrast, analyses reveal slightly higher service needs score for men and a significantly higher daily activity help score for women. The individual items in the daily activity help score in particular can be seen as more gender specific.

The constructed disability severity scores are further assessed with respect to self-reported physical and mental health. We find that, apart from the service needs score, the daily activity help score, and activity limitation and participation restriction scores are correlated with these health indices. That is, poorer health status (either physical or mental) is associated with increased need for help with daily activities, and higher degrees of activity limitation and restrictions in social participation.

Assessing the constructed scores based on activity limitations and participation restrictions with respect to indicators of living conditions revealed that both scores are associated with indicators of living situation. The more severe an individual's disability as measured through limitations in daily life activities and restrictions in social participation, the lower the level of school attendance and employment.

The publication of the results of the Living Conditions Survey in Malawi marks three milestones. Firstly, we report on the active participation and involvement of people with disabilities and their organisations throughout the entire process of undertaking this survey.

Very little relevant disability research has been conducted in Malawi. A 1983 National Statistical Office (NSO) Survey of Handicapped Persons in Malawi placed the rate of disability in the population at 2.9%. A further NSO survey conducted in 1993 indicated that the prevalence of disability in the population was about 2%. The Population Census was conducted in 1998 but there are no details available in the information base concerning disability, handicaps or impairments in the population, says the report.

35 percent of the disabled have never attended school - research

The report discovered that just like in Namibia and Zimbabwe, school attendance is clearly lower among persons with disabilities. Among children 5 years of age or older, 35% of those with disabilities had never attended school, while the corresponding figure for non-disabled was 18%. Interestingly, however, school performance (measured as highest school grade completed) was not different between the two groups. Among those who had attended school, 13% of those with disabilities had completed Form 1 - 4 as their highest grade, while the corresponding figure for non-disabled was 14%.

This result is different than that found in the previous studies where we found that among those who had attended school, performance was lower among those with disabilities, i.e. fewer of those with disabilities achieved higher levels of education.

The report's gender analysis indicates that among those with disabilities, 45.7% of males and 31.8% of females over the age of 5 years have writing skills, compared to 54.4% of males and 44.9% of females without disabilities. Regardless of disability status these figures are high but the contrasts between disabled, non-disabled and males/females cannot be taken lightly.

Regionally, among those in the north 54.8% of those with disabilities had writing skills compared to 61.1% of those without disabilities. In the Central region the figures were 42.6% and 50.2% and in the south 34.1% of those with disabilities and 46.7% of those without disabilities had writing skills.

Unemployment among disabled and non-disabled respectively in the Northern Region was 63% and 52%, in the Central Region 56% and 54% and in the South 57% and 53%. Only the difference observed in the North (highest among those with disabilities) was statistically significant. Furthermore, when examining men and women separately, statistically significant differences were observed only among males between disabled and non-disabled (unemployment 47% and 41% respectively).

58 percent of the people with disabilities are unemployed

Though no official unemployment figure could be found, unemployment in Malawi is high - and we find among our sample a high proportion of both people with and without disabilities who are "not currently working,". However, significantly more (about 58%) of those with disabilities are unemployed compared the non-disabled sub-sample (53%).

According to the data presented, it appears that unemployment is currently very high in Malawi: about 54%. Though the difference between those with and without disabilities does not appear to be large, a significantly higher proportion of people with disabilities (57.7%) are currently not working than among people without disabilities.

Women, however, were more often unemployed than were men; among those with disabilities: 68% unemployed women versus 47% unemployed men; and among those without disabilities: 64% unemployed women and 41% unemployed men.

It is of importance to note that the high unemployment figures reported here may be explained by differences in the questions that are used to elicit data on employment. The results produced here refer to formal employment (with an employer) or contractual employment including seasonal labour and not self-employment or work at home.

While these figures are not meant to represent official unemployment figures, they provide an indication of the current situation in Malawi. collected from Namibia and Zimbabwe were, in fact, higher in both countries indicating perhaps that Malawi is in a better economic situation than its neighbours.

While indicators of unemployment are high, it was however shown that among the same group of potentially economically active persons 15 - 65 years of age, 41% of those with disabilities had acquired some skill, compared to slightly fewer, 39% of those without disabilities. This is most likely a reflection of what is offered to children/persons with disability, i.e. skills training is (more) common in the special education services for persons with disabilities.

Similar results were obtained in Namibia and to an even larger extent in Zimbabwe where an extensive system of specialized services for individuals with disabilities, in particular employment opportunities in sheltered workshops, have existed in that country since 1950's.

Furthermore, mean monthly salaries, for those who provided that information, were lower among those with compared to those without.

On most indicators the comparison between the two types of households revealed expected differences; that is, households with disabled members have lower standards of living than the control households. This is demonstrated when assessing employment (fewer households with a disabled family member have someone working) household income, housing standard, and access to information

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