A small proportion of the respondents (1 - 2%) have stated violence, including war related and witchcraft, as the cause of their disability. The figures are however considerably higher when asking for experiences of violence because of disability, up to 24% and 18.5% for violence/abuse within family and outside of the home respectively. This is slightly higher than in previous comparable studies. Slightly more females reported experience of being discriminated in any public service than males, but the main impression is that gender differences are small. Any experiences of being beaten,
scolded or discriminated are unacceptable and a violation of human rights, and it may be of some concern that violence/abuse by family members is reported by one in four in spite of the context of this data collection that one can assume contributed to underestimate the phenomenon. The results indicate that many individuals with disability suffer under unacceptable treatment in particular in their home environment.
10.4 Health, well-being and health information
The comparison between case and controls with regards to chronic illness reveals a substantial difference with much higher incidence of chronic illness among cases. This is as expected, and although disability is created in the exchange between the individual and his/her social and physical surroundings, health is still an important explanatory component for disability within the ICF framework.
The relationship between health and disability is confirmed by both the household level and the individual level data, with lower levels of well-being, physical and mental health as assessed by the individuals with disability themselves. The study has further revealed that a large proportion of individuals with disability have no or limited knowledge and information about common diseases, and that the lack of knowledge of the four diseases included in this section of the questionnaire was more than 20 percentage points for three of the diseases. More than one in five of individuals with disability have problems
understanding information given to them about these common diseases, which is significantly higher than among non-disabled for three out of the four diseases. This is clearly serious both in a preventive and treatment perspective and may indicate that vulnerable groups are not sufficiently targeted by prevention efforts. Radio/TV, friends and schools are the major sources of information for all four diseases included, while health clinics and doctors were reported by relatively few. The latter may be seen as rather surprising and possibly indicate that prevention is given low priority within the current health services.
Access problems and limited information may be regarded as barriers, and in particular for individuals with disability. Addressing health and disability is thus about more than the health service itself - additionally it is also about information and knowledge and securing that tailor made information is provided to individuals and groups that are harder to reach than the general population and that easily get sidelined. An information/ knowledge gap among individuals with disability also requires consciousness-raising among health workers and particular strategies to ensure inclusion of individuals with disability.
Individuals with disability have higher levels of anxiety and depression than non-disabled, and they rate both their physical and mental health lower. This is of importance as the status of being disabled may easily shadow for health problems. It is a prerequisite for equitable health services that service providers are conscious about the double burden of many individuals with disability, i.e. poorer mental and physical health in addition to the impairment/disability.
10.5 Services
Unlike many other countries that have been included in similar research, there appears to be a substantial gap in access to health services among individuals with disability, with more than 40% stating that they did not receive health services even though they needed it. On one hand, this is the service with the smallest gap among the services included in the study. On the other hand, the gap is very high for such a critical service and simply implies that health coverage can hardly be said to be universal in this population. Gaps in services are very high for many of the services included, and simply indicate that many of the basic services are not available for large proportions of the disabled population and that the current specter of basic services is not sufficient to cater for the needs of
individuals with disability. This must be assumed to impact on the inclusion of individuals with disability in society and an evident area for improvements. This may partly be a capacity problem and partly a matter of exclusion. Further research will be necessary to reveal this. As these questions were not presented to non-disabled, we do not know to what extent access is lower among individuals with disability.
10.6 Daily life and social inclusion
The results on accessibility at home reflect the standard of housing which will vary between locations. In general, many respondents live in simple houses with weak infra structure and few facilities, i.e. without separate living rooms, dining rooms etc. Whereas the large majority of those who had the different facilities in their home did not report any
accessibility problems, mapping and adaptation where needed could be carried out by health and rehabilitation services at community level.
Concerning accessibility in the community, many of the facilities mentioned in the questionnaire were not applicable, i.e. assumed not to be available. Among those who responded to this question, the percentage stating not available ranged between 10% and 35%, in fact indicating major accessibility problems for individuals with disability who need to pay a visit to different public services. This can be assumed to lead to dependency and lack of inclusion. A mapping exercise of accessibility at public places/buildings/services could be a first step towards reducing such barriers.
Many individuals with disability report that the family supports them in their daily activities.
There is a consistent pattern in that control individuals are more involved than case individuals. For various variables on involvement, there is a gap of 10 – 25 percentage points when comparing individuals with and without disability. The results clearly indicate inclusion as an area in need of intervention both at family/household and community level. It adds to this that awareness of DPOs and membership in DPOs among individuals with disability is low, leaving the large majority of individuals with disability without this potentially important source of support.
10.7 Education
The individual level data in the household section revealed a substantial difference between individuals with and without disability in school attendance and literacy. The difference in school attendance is more than 30 percentage points. Non-disabled reported (somewhat) more years of education, higher school achievement and more often stated that they studied as far as planned. All in all, the results reveal that many individuals with disability are excluded from the education system, and other indicators indicate lower school achievement among individuals with disability. Supported by the results of the study, the combination of many individuals with disability not accessing school and relatively small differences between school going cases and controls, indicates a
selection process whereby the most competent individuals with disability are included and the more severely disabled are excluded from education. This is thus a matter of both ensuring access to education for all and to improve the way students with disability are handled. While this study does not reveal the mechanisms whereby individuals with disability are excluded from their right to education, both competence and attitudes within the school system should be targeted to improve the situation.
10.8 Economic activity
The different socio-economic indicators (Possession scale, Dietary diversity, Dependency Ratio, Access to information, Income types) all point in the same direction: control
households are in a better economic position than cases, with more secure and stable income.The individual level data (Individual section) reveals that substantially more
control individuals are employed, and that more case individuals have previously or never been employed. This is also reflected in the mean salary level which is substantially higher among case individuals.
While there are differences in economic activity to the advantage of control households, the large majority of both individuals with and without disability do not have work that gives them regular income. Results on economic activity, however, show clearly that control individuals and households are more integrated into the formal labor market. This must be regarded as the major reason for the economic/SES differences between the two groups (HHs and individuals), and the difference between the groups is exacerbated by the difference in mean number of household members in that case households cater for more people.
10.9 Assistive devices
Relatively few individuals with disability confirm that they have an assistive device.
Assistive devices are more common among males than females and among urban as compared to rural based individuals with disability. While we can expect that the need for assistive devices increase with increasing severity of disability, an interesting result is that
the use of assistive devices drops with increasing severity of disability. This may indicate that severely disabled are not properly serviced in Nepal. While there appears to be some diversity in the supply of devices, results further indicate that that private sources
dominate and that maintenance is largely left to the owners of the devices or their families. Most users of assistive devices claim to have sufficient information, although a large group lacks information. The results indicate limited involvement from the authorities in supply and service delivery.
10.10 Gender
The study has revealed some important gender differences. Fewer males report chronic illness and more females have poor or very poor physical and mental health. The gap in services tends to be larger for females and in particular with regards to educational services and assistive devices. Somewhat more females report that they have been refused entry to school. Fewer females have paid work, and more females report that they are unemployed. All in all, most of the indicators that were analysed point towards clearly less favorable results for females as compared to males.
Slightly fewer females with disability have children as compared to non-disabled females, and the number of children did not vary much between the two groups of women. There is also a tendency that more females with disability report pregnancies that ended before term. These three indicators indicate small differences in reproductive life courses among females with and without disability.
10.11 The urban - rural dimension
The study distinguishes between urban and rural areas. Important differences in
standard of living between the urban and rural areas are demonstrated by the indicators on infrastructure. Also, the contextual differences are reflected in the measure on
environmental barriers.
The three SES indicators all indicate that the living standard is substantially lower in rural areas. This is supported by most individual level indicators.
11 Conclusion
Having established evidence for differences between disabled and nonǦdisabled is an important step in the promotion of human rights and improved level of living among individuals with disability. The study offers an opportunity for boosting advocacy, for setting priorities, for assessing impact and developing policies, for monitoring the situation, and for increased knowledge among disabled and the public in general.
Generally, the study reveals consistent differences between case/control households and case/control individuals. Level of living, measured by means of a range of different
indicators, is higher among controls than among cases at both levels (household and individual). All together, the study thus provides evidence for differences in level of living that should be reduced and limited completely. This requires an active stand from the side of public authorities and a multi-sector strategy that deals with these differences.
Measures to achieve this will be both general and sector specific and a thorough analysis of what can be done to reduce the documented differences and to address service gaps and inadequacy in assistive device services, etc.
REFERENCES
Eide A H, Jele B (2011) Living Conditions among People with Disabilities in Swaziland. A National, Representative Study. SINTEF A 20047. Oslo; SINTEF Technology & Society.
Eide A H, Kamaleri Y (Eds.) (2009) Living conditions among people with disabilities in Mozambique. SINTEF Report No. A9348. Oslo; SINTEF Health Research.
Eide A H, Loeb M E (2006) Living conditions among people with disabilities in Zambia. A national representative survey.SINTEF Report No. A262. Oslo, SINTEF Health Research Eide A H, Nhiwathiva S, Muderedzi J, Loeb ME (2003). Living Conditions among people with activity limitations in Zimbabwe. A representative regional study.STF78
A034512.SINTEFUnimed, Health & Rehabilitation, Oslo.
Eide A H, van Rooy G, Loeb M E (2003b). Living Conditions among people with disabilities in Namibia. A National, Representative Study. STF78
A034503.SINTEFUnimed Health & Rehabilitation, Oslo.
Finkelstein, V., & French, S. (1993). Towards a psychology of disability. In J. Swain, V.
Finkelstein, S. French & M. Oliver (Eds.), Disabling barriers - enabling environments (pp.
26-33). London: Sage.
Grut L, Olenja J, Ingstad B (2011) Disability and barriers in Kenya. In: A H Eide and B Ingstad. Disability and Poverty. Bristol: The Policy Press.
Heiberg M, Øvensen G (1993) Palestinian Society in Gaza, West Bank and Arab Jerusalem. A Survey of Living Conditions. FAFO Report no. 151. Oslo, FAFO.
Hem, K.-G., Eide, A. H. (1998) Funksjonshemmedes levekår 1987-1995: Sakker akterut tross forbedringer. Samfunnsspeilet, 2, 20 - 25. (In Norwegian)
Ingstad B, Baider A, Grut L (2011) Where culture really matters: disability and well-being in Yemen. In: A H Eide and B Ingstad. Disability and Poverty. Bristol: The Policy Press.
NPC (2000) Level of Living Conditions Survey. Windhoek: National Planning Commission.
Kamaleri Y, Eide A H (Eds.) (2010) Living Conditions among People with Disabilities in Lesotho. A National, Representative Study. SINTEF Report No. A17239. Oslo: SINTEF Technology and Society
Loeb M, Eide A H (Eds.) (2004) Living Conditions among People with Activity Limitations in Malawi.SINTEF Report no.STF78 A044511. Oslo, SINTEF Health Research.
Schneider M, Claasens M, Kimmie Z, Morgan R, Naicker S, Roberts A, McLaren P.
(1999) We also count! The extent of moderate and severe reported disability and the nature of disability experience in South Africa. Pretoria: Community Agency for Social Enquiry.
Shakespeare, T. (2014). Disability Rights and Wrongs Revisited (Second ed.). Oxon:
Routledge, Taylor & Francis Ltd.
UN (2006).Convention on the Rights of Persons with Disabilities and Optional Protocol.
New York: United Nations.
United Nations (1994) The Standard Rules on the Equalizationof Opportunities for Persons with Disabilities. New York:UnitedNations.
United Nations (1993) World Programme of Action ConcerningDisabled Persons. New York: United Nations.
United Nations Development Programme (1997) Human Development Report 1997.
Oxford, Oxford University Press.
WHO (2001) International Classification of Functioning, Disability and Health. Geneva:
World Health Organisation.
WHO (1980).International Classification of Impairments, Disability and Handicap.
Geneva: World Health Organization.
Whyte SR, Ingstad B. (1998) Help for people with disabilities: do cultural differences matter? World Health Forum, 19, 1, 42 - 46.
HOUSEHOLD CONFIDENTIAL
A Study on Living Conditions among People with Disabilities in Nepal 2014
Questionnaire for Household Head
(Conducted by SINTEF/VaRG/NFDN)
Identification of person with disability Code 1 Name and Code of District
2 Nameof VDC/Municipality
3 Location 1 = Urban
2 = Rural
4 WardNumber
5 NameofVillage/Locality
6 Cluster Number
7 Household Number / ID 8 Nameof Household Head
9 Genderof HH Head 1= Male
2= Female
3= Other 10 Was this household screened as: Having at least 1 disabled member……….…1
Not having any disabled member………2 11 Total Number of Persons in Household
(should be the same as last Line Number filled in Section A) 12 Total number of persons with disability
13 Line number of primary respondent
To be completed by interviewer Date ofinterview
Day
Supervisor Interview Status Enumerator has to return to the household
Checked by the Supervisor Name:
Signature: Complete…..….1 Yes…………..…1
Incomplete…....2 No………...2
SectionA.HouseholdComposition:ForAllPersons
RELATIONSHIPTOHEADOFHOUSEHOLD MARITALSTATUS CRONICILLNESSES
1=Head 1=Nevermarried 1=Heartproblem
2=Husband/wife 2=Married with certificate 2=Breathingproblem
3=Son/Daughter 3=Marriedtraditional 3=Asthma
4=Son/DaughterͲinͲlaw 4=Consensualunion 4=Epilepsy
5=Grandchildofhead/spose 5=Divorced/separated 5=Cancer
6=Parentofhead/spose 6=Widowed 6=Diabetes
7=Brother/Sisterofhead/spose 7=Interfamily marrige 7=Malfunctionofkidney
8=Otherrelatives 8=Don’tknow/refuse 8=Cirrhosisofliver
SectionA.HouseholdComposition:ForAllPersons
LINE
BecauseofaHEALTHPROBLEM…
NO.
4=UNABLE 4=UNABLE 4=UNABLE 4 =UNABLE 4 =UNABLE 4 =UNABLE
9=NA 9=NA 9=NA 9 =NA 9 =NA 9 =NA
SectionA.HouseholdComposition:ForAllPersons–cont.forhouseholdmember11Ͳ20
Listthefirstnamesandfirst Whatisthe Is(NAME) Howoldwas Whatis Has(NAME) Whatwas
letterofthesurnameofall relationshipof maleor (NAME)at (NAME’S) beenchronically the personsinthishousehold, (NAME)tothe female? his/herlast marital illduringthe illness?***
startingwiththeheadofthe headofthe birthday? status?** past12months?
IFTHEREAREMORE *CODESFORQ.3 **CODESFORQ.6 ***CODESFORQ.8
THAN20PERSONSIN RELATIONSHIPTOHEADOFHOUSEHOLD MARITALSTATUS CHRONICILLNESSES
THEHOUSEHOLD, 1=Head 1=Nevermarried/single 1=Cancer
2=Husband/wife 2=Marriedwithcertificate 2=TB
PLEASEUSEA 3=Son/Daughter 3=Marriedtraditional 3=Malaria
CONTINUATION 4=Son/DaughterͲinͲlaw 4=Consensualunion 4=Diarrhoea 5=Grandchildofhead/spouse 5=Divorced/separated 5=Malnutrition
SHEETANDTICKTHE 6=Parentofhead/spouse 6=Widowed 6=Measles 7=Brother/Sisterofhead/spouse 9=Don’tknow/refuse 7=Pneumonia
BOXBELOW 8=Otherrelatives 8=Heartdisease
9=Domesticworker/NonͲrelative 9=Highbloodpressure
10=OthernonͲrelatives 10=HIV/AIDS(related)
99=Don’tknow 11=Otherdisease
SectionA.HouseholdComposition:ForAllPersons–cont.forhouseholdmember11Ͳ20
LINE
BecauseofaHEALTHPROBLEM…
NO.
Does(NAME) Does(NAME) Does(NAME) Does(NAME) Does(NAME) Usingtheusual havedifficulty havedifficulty havedifficulty haveany havedifficulty (customary) seeing,evenif hearing,even walkingor difficulty withselfͲcare language,does
wearing ifusinga climbing remembering suchas (NAME)have
glasses? hearingaid? steps? or washingall difficulty
concentrating? overor communicating
dressing? forexample
understanding
4=UNABLE 4=UNABLE 4=UNABLE 4 =UNABLE 4 =UNABLE 4 =UNABLE
9=NA 9=NA 9=NA 9 =NA 9 =NA 9 =NA
SectionB.LevelofEducationofHouseholdMembers–Aged5Yearsorabove
98= Do not know/refuse 8=Other
SectionB.LevelofEducationofHouseholdMembers–Aged5Yearsorabove–continue11to20
Transferthe Has(NAME)attended Howmany Whatis If(NAME)neverattend Can(NAME) Is(NAME) LINENO.of anyschool,collegeor yearsinalldid (NAME’S) school,whatisthe readandwrite 15years
personsas university? (NAME)spend highest reason?** inany oldor
listedin
1=YES
studyingin standardform language? above?
Sect.Awho school,college orlevelof (Codeupto2reasons)
are5yrsold 2=NO Q.19 oruniversity? education
9=DON’TKNOW>Q.20 1=YES
orabove completed?* Tobeaskedonlyif YES Q.22
SectionC.EconomicActivityofHouseholdMembersAged15Yearsorabove
LINENO. WORKSTATUS* POSSESSANYSKILL? TYPEOFTRAINING FILTER
TransfertheLINE
SectionD.ReproductiveHealthofFemaleHouseholdMembersaged15yearsorabove
LINENO. CHILDRENmarriedonly?? NO.OFCHILDREN STILLBIRTHS NO.OFSTILLBIRTS TransfertheLINE
SectionE:IncomeandExpenses
1 Wage/Salarywork(Grosssalary) 1 1
2 Remittancesreceived 2 2
3 Cashcropping 3 3
4 Livestockandpoultrysales 4 4
5 Subsistencefarming 5 Q132 5
6 Formalbusiness(registered) 7 7
7 Informalbusiness(nonͲregisteredͲsee below*)
8 8
8 Privateinsurance/pension 9 9
9 Workman’sCompensation 10 10
10 Rent 11 11
11 Other(specify) 12 12
12 Noincomefromanysource 13 Q132 13
13 Notstated/Refused 14 Q132 14
* This includes payments received for handicrafts, knitting, sewing, repairing shoes, repairing punctures, for providing services (e.g. making thatch roofs for huts, cutting reeds etc.) Also includes income from selling e.g. charcoal, local gin, local beer etc.
131 Ranking of expense categories: I’m going to ask you on your household expenses. On a scale of 1 to 5, please rank on the expense categories I’m going to read, where “1” = the least of the household income goes to and “5” = the most of household income goes to. If your household has no expense on a specific category, please say “NONE”.
Least Most None
132 Now I would like to ask you about the types of foods that you or anyone else in your household prepared and ate in the past TWO weeks during the day and night (food purchased and eaten outside of the home is not included)
Yes No 1 Any bread, rice, noodles, biscuits, or any other foods made
from millet, maize, rice or wheat?
1 2 2 Any potatoes, beetroot, yams, cassava, carrots or any other
foods made from roots or tubers?
1 2 3 Any vegetables? (cabbage, spinach, pumpkin leaves or any
green leafy vegetables)
1 2
4 Anyfruits? 1 2
5 Any pork, lamb, goat, rabbit, chicken, duck, or other birds, liver,
kidney, heart, or other organ meats? 1 2
6 Any eggs? 1 2
133 In the past month did it happen that there was no food to eat of any kind in your household because of lack of resources?
No... 1
6 Telephoneinthehouse 1 2
7 Iron 1 2
8 Fan 1 2
9 Heater 1 2
10 Airconditioner 1 2
11 Stovewithgas/electric 1 2
12 Stovewithparaffin 1 2
13 Tableandchairs 1 2
14 Refrigerator 1 2
15 Microwave 1 2
16 Electricity 1 2
17 Solarenergysystem 1 2
18 Electricalgenerator 1 2
19 Personalcomputer 1 2
20 Bicycle 1 2
21 Motorcycle 1 2
22 Privatecar 1 2
23 Bed(s) 1 2
24 Livestock(cattleetc.) 1 2
27 Bedsheets 1 2 Concrete/cement ... 2 Wood ... 3 Other(specify) ... 4 1353 Maintypeofwalls Poles&mud ... 1 Corrugatedironsheets ... 2 Grass/leaves ... 3 Bricks(burntorsunͲdried) ... 4 Compactedearth(mdindo) ... 5 RentFree(notowned) ... 3 Providedbyemployer(government) ... 4 Providedbyemployer(private) ... 5 Other(specify) ... 6 138 WhatistheMAINsourceofdrinkingwaterin
yourhouseholdatpresent?[CircleONEonly]
Pipedwaterinside ... 1 Pipedwateroutdoors,onproperty ... 2 Pipedwateroutsidetheproperty ... 3 Publicpipe/tap... 4 Borehole ... 5 Protectedwell ... 6 Unprotectedwell ... 7 River/stream/dam/spring/lake ... 8
Pipedwaterinside ... 1 Pipedwateroutdoors,onproperty ... 2 Pipedwateroutsidetheproperty ... 3 Publicpipe/tap... 4 Borehole ... 5 Protectedwell ... 6 Unprotectedwell ... 7 River/stream/dam/spring/lake ... 8