R e s e a r c h A r t i c l e D is a b i l i t y P r o f il e o f G r a n t R e c ip ie n t s in a S e m i- R u r a l A r e a in S o u t h A f r ic a A B S T R A C T : A d e s c r ip tiv e s tu d y w a s u n d e r ta k e n to e sta b lish , a m o n g s t o th e rs, th e d e m o g r a p h ic d e ta ils a n d th e d is a b ility p r o file o f a g ro u p o f p e r s o n s w ith d is a b ilitie s w h o c o lle c te d th e ir d is a b ility g r a n t a t th e K le in m o n d P o s t O ffic e in J u n e 1999. D a ta w e re c o lle c te d b y m e a n s o f a q u e s tio n n a ir e d u r in g f a c e - to - fa c e in te r v ie w s w ith th e g r a n te e s a n d /o r th e ir p r o x ie s . A q u e s tio n n a ir e d e v e lo p e d f o r th is p u r p o s e in c lu d e d a d i s a b i l i t y c a ta lo g u e b a s e d o n th e I n t e r n a t i o n a l C la s s ific a tio n o f Im p a ir m e n ts , D is a b ilitie s a n d H a n d ic a p s (IC ID H ). T h e r e p e a ta b ility o f th e q u e s tio n n a ir e w a s 96% . T h e m e a n a g e o f th e m a in ly m a le g r a n te e s w a s 4 2 y e a r s (ra n g e: 1 8 - 6 4 ) . N e a r ly a th ir d o f th e s u b je c ts h a d b e e n d is a b le d s in c e b irth , re in fo rc in g th e im p o r ta n c e o f d is a b ility p r e v e n tio n p r o g r a m m e s a s o u tlin e d in s e v e r a l p o lic y d o c u m e n ts . M o s t p e r s o n s w ith d is a b ilitie s h a d p r o b le m s w ith a c tiv itie s in th e s itu a tio n a l d is a b ility c a te g o r y (8 2 % o r 24 /2 9 ), w h ile o n ly a f e w r e p o r te d p e r s o n a l c a re d is a b ilitie s (3 4 % o r 10/29). T he m a jo r ity o f th e g r a n te e s (8 6 % o r 2 5 /2 9 ) re p o rte d d isa b ilitie s in m o re th a n o n e category. T h is m a y b e a n in d ic a tio n th a t o n ly p e r s o n s w ith m u ltip le d is a b ilitie s q u a lify f o r p e r m a n e n t d is a b ility g r a n ts in S o u th A fric a . K E Y W O R D S : D IS A B IL IT Y , G R A N T S , S E M I-R U R A L . Acknowledgements: Statistical advice: Mrs F Little, Department of Statistical Sciences, University of Cape Town; Financial assistance: Medical Faculty, University of Stellenbosch. FRIEG A M Phil (Rehabilitation)1; HENDRY JA, MSc ME DSC; HONS BSc; BA; TTHD; Nat. Dipl. Physiotherapy2 1 Senior lecturer, Department Physiotherapy, Faculty of Health Sciences, University of Stellenbosch Head of Department & senior lecturer, Centre for Care and Rehabilitation of the Disabled, Faculty of Health Sciences, University of Stellenbosch INTRODUCTION W hy is it o f interest to physiotherapists to know w hich disabilities are prevalent in persons who receive a perm anent disability grant? Firstly, clients often consult physiotherapists regarding their eligibility for disability grants. Secondly, in view o f prim ary health care delivery in South Africa, it is the role of., the physiotherapist to deliver community- based rehabilitation services to persons with disabilities. Being able to describe aspects o f a select group o f persons already receiving perm anent disability grants can assist the physiotherapist when counselling his/her clients and also in planning appropriate physiotherapy and other services within a primary health care team. There are many definitions o f disabi­ lity, mainly based on conceptual differ­ ences, the most com m on being that used by the World Health Organisation (W HO, 1980). The W H O is currently in the p rocess o f fin alisin g a revised version o f the ICIDH, the International Classification o f Functioning, Disability and H ealth, IC ID H -2 (W H O , 1999, www.who.intW icidh). This review ed docum ent is likely to radically change disability research in the future and the altered term inology should make classification less prejudicial. T he original W H O ’s International C lassification o f Im pairm ents, D isabili­ ties and Handicaps (ICIDH) differentiates between three dom ains o f disablem ent and rests on the premise that there is a linear relationship between impairments, disabilities and handicaps. This is how ­ ever not true, as a person who presents with an im pairm ent does not necessarily have a disability nor a handicap. It is therefore o f concern to note that the application form (VRT-3), which has to be com pleted by the exam ining medical officer when a person applies for a disability grant, is based m ainly on im pairm ents rath er than disab ilities, reflecting the original ICID H premise. Hence, although the term “disability grant” suggests otherwise, an individual’s impairm ents, rather than disabilities are o f prim ary concern to the D epartm ent of Social Security, w hich adm inisters these and other social grants. One aim o f this study was therefore to establish the disability profile o f a defined group o f recipients o f a perm a­ nent disability grant, including dem o­ graphic info rm atio n that w ould be helpful in interpreting their disability profile. O ther aspects investigated (such as utilisation o f a caregiver, health and social needs) will be reported elsewhere. METHODOLOGY The protocol w as subm itted to and approved by the R esearch Com m ittee C o f the M edical Faculty o f the University o f Stellenbosch. Sam pling procedures were unneces­ sary as the study population consisted of all persons with disabilities (n=32) who C O RRESPO N D EN C E TO: A. Frieg D epartm ent o f Physiotherapy, Faculty o f Health Sciences, U niversity o f Stellenbosch P.O. Box 19063, Tygerberg 7505 Tel: (021) 938-9304 (w) (021) 552-2445 (h) SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 No 2 23 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) http://www.who.intWicidh co llected th eir p erm an en t d isability grant at the K leinm ond Post Office in June 1999. Previous disability studies have focussed prim arily on disability prevalence in rural and urban areas (www.statssa.gov.za; Schneider et al, 1999; Coetzee, 1997; C oncha and Lorenzo, 1993; Cornieljie et al, 1993; M e Laren et al, 1987; Disler et al, 1986). There is however, a paucity o f epidem iological inform ation about groups o f persons with disabilities in semi-rural areas in the Western Cape. This fact, together with logistical considerations, i.e. time and financial constraints, prom pted the researcher to choose the geographical area o f Kleinm ond, a typical semi-rural town in the W estern Cape. A questionnaire was developed which aim ed at establishing, am ongst others, dem ographic characteristics, a disability profile, caregiver reliance and needs o f the subjects. The disability catalogue o f the questionnaire was based on the International Classification o f Im pair­ ments, Disabilities and Handicaps (ICIDH) (W HO, 1980) as at the time o f planning the study and the subm ission o f the protocol for approval, the newer version, ICIDH-2 (W HO 1999, www.who.intW icidh), was not available to the researcher. Furtherm ore, application and approval o f disability grants in South A frica continues to be based on the original source document. In the original source docum ent an im pairm ent suggests a deviation within the biom edical status o f an individual, while a disability refers to the activities an individual is unable to perform . A handicap on the other hand, relates to a decrease in the fulfilm ent o f the roles a person has on a societal level (WHO, 1980). All three domains are divided into categories and the ICID H allows for coding o f the various aspects. Subsequent to this study the ICIDH-2 was perused by the researcher (ICIDH-2 workshop, 2000). Once the ICIDH-2 is form ally ratified by the W H O and there is clarity on the disability m ovem ents’ opinion regarding the new classification system, it is recom m ended to use the activity catalogue for sim ilar studies, i.e. establish an activity profile. The disability catalogue o f the ques­ tionnaire in the present study consisted o f seven categories, i.e. behavioural-, com m unication-, personal care-, loco­ motor-, body disposition-, dexterity- and situational disabilities. Each category in clu d ed a num ber o f activ ities and subjects were asked to indicate whether or not they experienced problem s with any o f the activities. N om inal variables, i.e. dichotom ous yes/no responses were u tilised. In the case o f activities which were not applicable to a particular respondent, e.g. “able to care for your children” , a third response option (“not applicable”) was given. Activities were also recorded as non-problem atic when a person could perform the activity with an assistive device in his or her posses­ sion, e.g. reading glasses. A pilot study was conducted in the Caledon/B otriver area (a semi-rural area sim ilar to that o f the study area) and the questionnaire was translated into A frikaans by senior physiotherapists proficient in both English and Afrikaans and the disability field. All subjects were visited in their hom es by the researcher in June/July 1999. The aims o f the study were explained to them and/or their proxies, confidentiality was guaranteed and they were interviewed in their home language, once written consent had been given. Only self- or proxy reported disability was recorded and no attem pt was made to quantify the extent or severity of the disabilities or to objectively measure abilities. Four subjects were random ly selected and interviewed on a second occasion in order to assess the repeatability o f the questionnaire. D ata were analysed with the statistical software package Statistica. RESULTS & DISCUSSION A response rate o f 90% (29/32) was considered adequate for a study o f this nature, as the study population was sufficiently represented to ensure that the results were valid for this group of disability grant recipients. Reliability o f the questionnaire was tested by random ly selecting four gran­ tees and interviewing them a second time. O f all responses o f those four subjects, 96% were the same at both interviews, attesting to a strong likelihood that data were collected in a reliable manner. G rantees contributed to 72% (21/29) o f all interviews. In 48% o f cases (14/29) the grantees only w ere interview ed, w hile both the grantee and the proxy were interviewed in 24% (7/29) o f cases. The relationship o f the proxy to the grantee in this study population was m ainly parent to child. A lthough proxy reporting may lead to bias (Sackett, 1979), it can be argued that in the present study however, the proxies had intim ate know ledge o f the persons with disabilities and their needs, and could contribute meaningfully to the interviews. W hile Schofield et al (1997) agree that c a re r rep o rts are valid, K napp and H ewison (1999) reported the opposite. T he m edian age o f the grantees was 40 years (range: 18-64 years). This w ell-d efin ed ran g e reflects present legislation which determ ines that dis­ ability grants are only paid to adults from 18 years o f age, up to 60 and 65 years for women and men respectively. Thereafter, the grants are converted into old age pensions. T he gender distribution o f the sub­ jects was 55% (16/29) male and 45% (13/29) female. Although most grantees (59% or 17/29) were single, the majority (93% or 27/29) did not stay alone. This may be explained by the fact that the m ajority o f disability grant recipients in this study population (66% or 19/29) relied to some extent on a caregiver. M ost grantees spoke A frikaans as their hom e language (86% or 25/29), which was not surprising considering the geographical area in which the study was conducted. Subjects were asked to describe in their ow n w ords why they received a disability grant. The reasons given included: inability to w ork (76% or 22/29), the disability grant being their only form o f incom e (10% or 3/29) or inability to take care o f them selves (17% or 5/29). M any grantees explained the nature o f their im pairm ent (28% or 8/29). A considerable num ber o f subjects had been disabled since birth (31% or 9/29), and 48%. (14/29) had received a perm anent disability grant for the past 5 years, w hile only 7% (2/29) had received a grant for more than 25 years. 2 4 SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 No 2 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) http://www.statssa.gov.za http://www.who.intW TABLE 1. Number of cases in specific disability categories Disability category Number of cases Percentage of cases Situational 24 82% Communication 20 69% Body disposition 18 62% Behavioural 17 59% Locomotor 16 55% Dexterity 11 38% Personal care 10 34% For the rem ainder o f the disability catalogue, subjects were counted as hav­ ing a disability in a category when they indicated that they had a problem with any activity in that category. Only three persons (10% or 3/29) had ju st one type o f disability (all o f them situational disabilities). One person did not fit into any category and the rem aining respondents (86% or 25/29) reported m ultiple disabilities, i.e. they reported problem s w ith activities in more than one category. It may be cau­ tiously hypothesised that mainly persons with m ore than one disability qualified for a disability grant in this semi-rural South African area. It is also possible that the budget o f the D epartm ent o f Social Security only perm its assistance to those perceived to have the greatest needs, but no such extrapolations are possible on the basis o f the current study. O f the grantees, 66% (19/29) relied on a caregiver to som e extent and there was a significant relationship between mean disability score and caregiver utilization (p = .0001). These results will be reported in m ore detail elsewhere. A sum m ary o f the disability profile is displayed in Table 1. It was found that most persons had situational disabilities (82% or 24/29), while only 34% (10/29) reported personal care disabilities. In spite o f 55% (16/29) o f the grantees having locom otor disabilities, only a few experienced problems with personal care or dexterity. It is extremely difficult to relate these results to findings from other South African studies. The latter, predom inantly prevalence studies, are seldom based on the ICID H disability catalogue, but rather on varying inter­ p retatio n s and co m binations o f the concepts o f impairm ent, disability and handicap (www.statssa.gov.za; Schneider et al, 1999; Coetzee, 1997; Concha and Lorenzo, 1993; Cornieljie et al, 1993; M cLaren et al, 1987; D isler et al, 1986). In the present study, each disability category was analysed individually by looking at the percentage o f items or activities reported to be problem atic for the grantees, i.e. positive responses. T able 2 illu s tra te s the n u m b e r o f grantees’ “yes” responses when asked whether o r not they had difficulty with the activity, and includes the percentages (rounded off). Only the five most fre­ quently reported items are given in each category, while the rem aining items are summed under “other” . Situational disabilities: Activities in the situational category refer to activities that are only considered challenging in particular circum stances, such as stressful situations, w eather sensitivity or difficulty tolerating light or noise (W HO, 1980). D ifficulties with these activities may influence a person’s employability, ability to hold down a job or learn a new skill, which in turn may explain the high unem ploym ent rate found in this study (93% or 27/29). Communication disabilities: M ost grantees reported having problems with reading and writing. It was not established w hether or not subjects were illiterate. However, as more subjects reported inability to read (41% or 12/29) and write (38% or 11/29) than inability to see (31% or 9/29), this is a strong possibility, indicating that a variable option “ not ap p licab le” w ould have been useful for the form er two activities. Behavioural disabilities: M ost o f the behavioural d isabilities reported, e.g. learning a new skill or knowing what day it is, may explain why the majority o f the respondents were also unem ployed and reliant on a caregiver, as com m and o f these acti­ vities is pivotal for independent living. Body disposition disabilities: Many subjects had difficulties preparing meals, doing laundry and cleaning their homes. This could possibly be related to the fact that the m ajority o f the respondents in this study were men, who are traditionally not involved in house­ hold chores. It may also have con­ tributed to the grantees’ difficulties in activities in the dexterity, behavioural or situational categories. These relationships were, how ever not further analysed. Locomotor disabilities: In this category the percen tag e o f g rantees reporting difficu lties w ith activ ities increased as the activities becam e more complex. Only a few persons rep o rted difficu lty m oving inside the house (7% or 2/29) or getting out o f bed (7% or 2/29), w hile more persons ex p erien ced d ifficu lty w ith intricate activities such as walking down more than 5 stairs or running. Dexterity disabilities and personal care disabilities: Problem s related to personal care and dexterity as indicated by the grantees may all have contributed to their utili­ sation o f caregivers. A lthough 55% (16/29) o f the subjects reported having locom otor disabilities, only a few had problem s with activities in the personal care (34% or 10/29) and dexterity cate­ gories (38% or 11/29). The ICIDH attributes locom otor disabilities mainly to low er lim b im pairm ents, whereas upper lim b function is necessary in the latter two categories. M any of the highly prevalent neuro-m usculoskeletal impairm ents, such as stroke, lim it acti­ vities o f both upper and lower limbs, and this discrepancy in the findings was not anticipated by the researcher. SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 No 2 25 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) http://www.statssa.gov.za TABLE 2. Reported difficulties per disability category Disability category Item Positive responses Percentage of respondents (n=29) S itu at io na l ca te go ry Tolerating stress 20 69% Tolerating noise 15 52% Feeling under the weather 15 52% Getting out of breath easily 13 45% Tolerating light 8 28% C om m un ic at io n ca te go ry Reading 12 41% Writing 11 38% Seeing 9 31% Talking 8 28% Understanding 5 17% Other (1 item) 2 7% B eh av io ur al ca te go ry Learning a new skill 14 48% Knowing what day it is 12 41% Making decisions about self 11 38% Keeping self safe 10 34% Neglecting own appearance 9 31% Other (4 items) 14 48% Bo dy di sp os iti on ca te go ry Preparing own meal 12 41% Cleaning own home 11 38% Washing own laundry 11 38% Shopping 10 34% Picking up objects from the floor 6 21% Other (4 items) 7 24% Lo co m ot or ca te go ry Running 16 55% Descending > 5 steps 9 31% Ascending > 5 steps 9 31% Descending 2-5 steps 5 17% Ascending 2-5 steps 5 17% Other (6 items) 19 66% Pe rs on al c ar e ca te go ry Washing self 9 31% Dressing self 6 21% Shaving self 4 14% Controlling stools 3 10% Controlling urine 2 7% Other (1 item) 2 7% D ex te rit y ca te go ry Using a telephone 8 28% Manipulating small objects 5 17% Opening taps 4 14% Using taps 4 14% Gripping with hands 3 10% Other (1 item) 1 3% CONCLUSIONS: The present study succeeded in esta­ blishing both dem ographic data and disability profiles o f the study popula­ tion. In spite o f the W H O ’s intention to provide a classification o f disablem ent via the original ICID H docum ent, there is little published research utilising the disability categories o f this instrument. M any reported figures on disability, most notably the South African census, seem to be im pairm ent based, repre­ senting the m edical model o f disability. This is also true for present legislation regarding eligibility o f persons with disabilities for social assistance, as they are prim arily assessed on the basis of im pairm ents, rather than disabilities. T he D ep artm en t o f Social Security should address this discrepancy and develop m ore appropriate assessm ent procedures, reflecting disability and/or handicap within a social model. This is particularly im portant in view o f the w orld-w ide paradigm shift away from a medical model, w hich presupposes a linear relationship between impairments, disabilities and handicaps. The disability catalogue o f the ICIDH was found to be a relatively easy tool on w hich to base the questionnaire, although descriptions were found to be cum bersom e and categories overlapped somewhat. It remains to be seen whether the revised version (ICIDH-2) will be adopted by the World Health Assem bly in M ay 2001 and lead to m ore consis­ tency in disability research and, more im portantly, w h eth er persons w ith disabilities will em brace this instrument. It will then be o f interest to conduct a study on a sim ilar population using the eight chapter activity catalogue o f the ICID H -2 w hich replaced the disability catalogue o f the original document. The m ajority o f the respondents in this study (86% o r 25/29) reported disabilities in more than one category. It may therefore cautiously be hypo­ thesised that a person only qualifies for a disability grant in South Africa when the disabilities are extensive. This requires further investigation. Further­ more, studies exam ining aspects relating to the quality o f life o f persons with m ultiple disabilities and their caregivers are also recom m ended, as the present 2 6 SA J o u r n a l o f P h y s io th e ra p y 2001 V o l 57 No 2 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) quantitative study did not allow for any inferences to be made regarding the im pact o f m ultiple disabilities on other aspects o f life. For example, the partici­ pation catalogue o f the new ICIDH-2 could be a useful tool to capture the relev an t inform ation about g ran tees’ life-roles. It was a m atter o f concern that the present study, although conducted on a relatively small study population, found that nearly one third o f the grantees had been disabled since birth. This requires further investigation and also highlights the im portance o f appropriate prim ary and secondary prevention program m es as strongly recom m ended in various South African policy documents (Govern­ m ent G azette N o 1108 o f 1997; M beki, 1997; Integrated Provincial D isability Strategy, 1999). Finally, conducting face-to-face inter­ views in grantees’ hom es has broadened the researcher’s personal and professional perspective in terms o f the m any chal­ lenges facing persons with disabilities w ho rely on social assistance. She there­ fore expresses her w holehearted thanks to the grantees and their proxies. REFERENCES C o e tz ee LT 1997 T he p re v alen c e and re h a ­ b ilita tio n n e e d s o f in d iv id u a ls w ith lo c o m o ­ to r disa b ility in M itch e lls P lain. 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