HARNESSING THEIR POTENTIAL · FOR GOD AND MY COUNTRY Above: Young Deaf children attending school. Photo taken for the Advocacy project. Gulu, Uganda JAMES EBITU FOR PERMANENT SECRETARY

HARNESSING THEIR POTENTIAL THE STATE OF DISABILITY IN UGANDASUMMARY REPORT

MINISTRY OF GENDER, LABOUR AND SOCIAL DEVELOPMENT

THE REPUBLIC OF UGANDA

SEPTEMBER 2020

H A R N E S S I N G T H E I R P O T E N T I A L T H E S TAT E O F D I S A B I L I T Y I N U G A N D A

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ACKNOWLEDGMENTSThe Ministry of Gender, Labour

and Social Development wishes to express its sincere thanks to all the stakeholders who participated in the

research process that has resulted in this report on the Situation of Persons with Disabilities in Uganda.

The process was spearheaded by a team of consultants from Development Pathways, alongside a team of national consultants, with the guidance and support of the Department of Disability and Elderly Affairs and the Expanding Social Protection Programme.

The research has been a comprehensive process that involved reviewing literature, analysis of available national level data sets and undertaking key informant interviews with policy makers, programme implementers and most importantly interviews and focus groups with persons with disabilities and their care-givers. This would not have been possible without the support of the participating districts where the research was undertaken, namely; Gulu, Lamwo, Nakasongola, Tororo,

Kyegegwa, Kirihura, Kyankwanzi, Amudat, Manafwa and Kampala Capital City. We are immensely grateful to the leadership, staff and residents of all these districts for their support and participation in the research.

We would also like to appreciate the help and support of the National Council for Persons with Disabilities and the National Union of Persons with Disabilities in Uganda (NUDIPU), as well as all the members of the Technical Working Group on disabilities, along with the many other non-governmental organisations who supported this research. We further acknowledge the technical support provided by the Uganda Bureau of Statistics, which was critical for the development of the nationally representative household survey on persons with disabilities.

Finally, we wish to appreciate the financial and technical support provided towards the research by our development partners; the World Food Programme (WFP), the UK Department for International Development (DFID) and Irish Aid.

The Constitution of the Republic of Uganda, Article 35 states “that Persons with disabilities have a right to respect and human dignity,

and the State and Society shall take appropriate measures to ensure that they realize their full mental and physical potential”. The Constitution further provides for the enactment of laws and policies to address their concerns. As a result, Government has formulated the Persons with Disabilities Act 2020 which is a key instrument in providing for the rights of persons with disabilities.

The Government has also initiated social protection programmes aimed at improving the wellbeing of vulnerable persons including persons with disabilities, for instance the Special Grant for Persons with Disabilities. Government is committed to mainstreaming disability in development through promoting effective participation, engagement and inclusion of persons with disabilities. However, there are still concerns of violation of rights, discrimination, exclusion and stigmatisation of persons with disabilities in the country.

To further understand these concerns, the Ministry, in collaboration with development partners,

commissioned a study on the Situational Analysis of Persons with Disabilities in Uganda to understand the critical challenges that persons with disabilities face in accessing services and how their participation can be enhanced to reduce exclusion.

This summary of the Disability Situational Analysis report therefore comes in another key instrument to facilitate evidence-based programming by the different stakeholders engaged in the disability work.

The summary report highlights inadequacies in areas of access to health, education, governance, communication, skills development, rehabilitation and inclusion, among others that need to be addressed through meaningful and purposive mainstreaming of disability issues in all sectors.

I therefore call upon stakeholders to transfer this Situational Analysis Report recommendations into workable solutions to improve the livelihoods and wellbeing of persons with disabilities. The Government will continue to provide an enabling environment to ensure that persons with disabilities enjoy and exercise their rights through implementation of the existing legal and policy frameworks available.

FOR GOD AND MY COUNTRY

Above: Young Deaf children attending school. Photo taken for the Advocacy project. Gulu, Uganda

JAMES EBITUFOR PERMANENT SECRETARY

FOREWORD

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A boy with a cognitive impairment is helped to dress by his grandmother. Luweero district, Uganda

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FRANK. K. TUMWEBAZEMINISTER

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1 DisabilityinUganda 62 Commitmentstopersonswithdisabilities 73 Disabilityinnumbers 84 Livingarrangements 115 Povertyandstandardsofliving 146 Socialnormsandexpectations 207 HouseholdShocks 228 Disabilityacrossthelifecycle 249 BuildingresilienceforpersonswithdisabilitiesinUganda 3610 KeyRecommendations 4211 Credits 44

ACRONYMSCDO CommunityDevelopmentOfficerHIV HumanImmunodeficiencyVirusesNCD NationalCouncilforPersonswithDisabilitiesPSPS PublicSectorPensionSchemeUGX UgandanShillingUNCRPD UNConventionontheRightsofPersonswith

Disabilities

A man collects his cash transfer. Uganda.

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CONTENTS

6


Persons with disabilities in Uganda are at risk of vulnerability and shocks. The additional costs of disability, along with stigma

and discrimination, mean that they, and their households, are increasingly being left behind.

But it does not have to be this way. Persons with disabilities are not being left behind in Uganda because of their impairment. This is not what makes them different. As recognised in the UN Convention on the Rights of Persons with Disabilities (UNCRPD), to which Uganda is signatory, disability is created by a person’s environment. Exclusion from society is a result of attitudinal, environmental and institutional barriers, and the interaction of an individual’s impairment with these barriers is hat generates their disability. Persons with disabilities are not vulnerable; it is their environment that makes them vulnerable.

Services, policies and legislation therefore play a key role in removing barriers, reducing stigma and discrimination, and enabling persons with disabilities to participate in society on an equal basis as others. In order to have a transformative impact, however, it is essential that the challenges and barriers that persons with disabilities face are fully understood and addressed.

Source: Al Ju’beh, K. (2017)

Disability in Uganda

FIGURE 1 A person’s environment is what makes them vulnerable

1 2

I N C LU S I O N

IMPAIRMENT + ACCESSIBLE ENVIRONMENT

IMPAIRMENT + BARRIER

DISABILITY

Commitments to persons with disabilities

TheGovernmentofUgandahasmadeaseriesofcommitmentstopromotetherightsofpersonswithdisabilitiesinUganda.

Theseincludeaffirmativeactionsinlegislationandpolicy,aswellasquotasforpoliticalrepresentationatalllevelsofgovernancedowntothesub-counties.

Althoughtherehavebeenarangeofdefinitionsofdisabilityusedacrossnationallegislationandpolicies,mostarebroadlyrights-based–thatis,disabilityisseenasan“evolvingconcept”,basedonadynamicinteractionbetweenaperson’simpairmentandthebarriersthattheyface.However,despitethegoodintentionsoutlinedinlegislationand

policies,gapsremain,particularlyintheareasofimplementation,monitoringandcompliance.ThePersonswithDisabilitiesAct(2020)isintendedtoaddresssomeofthecriticismsthatUgandahasfaced,althoughitisstillnotfullycompliantwitharights-basedapproach.

WithinUganda’sdevelopmentframework,Vision2040,socialprotectionisunderscoredasakeymeansofaddressingtherisksandvulnerabilitiesforcertaingroups,includingpersonswithdisabilities.Itisimportanttoemphasise,however,thatpersonswithdisabilitiesaremadevulnerablebytheirenvironment.Removingbarriersandcreatingopportunitiesforinclusionwouldthereforereducethisvulnerability.

Underarights-basedapproach,disabilityiscreatedbythesocialenvironment.Peoplewithimpairmentsareexcludedfromfullyparticipatinginsocietyduetoattitudinal,environmentalandinstitutionalbarriers.Societymustthereforeincludepersonswithdisabilitiesbychangingattitudes,practicesandpoliciestoremovebarriers.

Therights-basedapproachusestheUNCRPDasitsmainreferencepoint,andcentrespersonswithdisabilitiesbyregardingthemasactiveagentsofchange.Personswithdisabilitiesaredecision-makers,citizensandrightsholders,whocanmaketheirowndecisionstoparticipateinsociety.

BOX 1 What is a rights-based approach to disability?

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Al Ju'beh, K. (2017)

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Disability in numbers

Overall, 8.5 per cent of Ugandans have a disability. Disability prevalence increases sharply with age, for as people grow older

and frailer, their health decreases and they are more likely to experience age-related impairments. Up to 40 years of age, men are more likely to experience a disability, but above 40 years, the rate is higher among women. For women, this is due to a range of factors including their reduced access both to resources and services, as well as their social roles which lead to

adverse conditions, poorer nutrition and a higher workload.

However, since Uganda has a young population, the highest numbers of persons with disabilities are below the age of 15 years. Moreover, disability is predicted to increase substantially across all age groups by 2050. Most strikingly, the number of working-age people living with disabilities will increase to over three million, which is an increase of 330 per cent. These projections have implications for the policies and services that Uganda must put in place to prepare for the future.

FIGURE 2 Prevalence of disability by five-year age groups and by sex

TheWashingtonGroupShortSetofQuestionsaresixquestionsthatallowforascaledresponse.Thereisalsoachildmoduleforthoseaged2-17years.

Inthisstudy,disabilitywasdefinedasanindividualwhohaseither“alotofdifficulty”or“cannotdoatall”inoneormorefunctionaldomains(universalactivities).Foradults,theactivitiesarewalking,seeing,hearing,cognition,self-careandcommunication.

A woman takes care of her child in

front of their home. Luweero District,

Uganda.

BOX 2 How was disability measured for the situational analysis?

Around 40% of older persons aged 65 years and above have a disability in Uganda, and this rises to 57% among those aged 80 years and above

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2-4To

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70-7465-69

60-6455-59

50-5445-49

40-4435-39

30-3425-29

20-2415-19

10-145-90%

10%

20%

30%

40%

50%

60%

70%Male Female

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Years

Total

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DISABILITY IN NUMBERS3

Different impairments interact with barriers in different ways. A child with difficulties communicating, for example, may not be able to attend school without an assistant. A child who has difficulty moving may not be able to travel because transport costs too much.

In Uganda, although there is little variation between impairments types among children, adults have the most difficulty with seeing followed by walking. Furthermore, roughly one-third of all persons with disabilities have difficulties in more than one activity, and this intersection of impairments may mean that they face more barriers.

Some impairments are not easily identified. Mental health conditions are not included in the Washington Group Short Set of Questions, which can lead to some groups being excluded. Cognitive impairments are also often underreported because of the stigma attached. It is therefore important to ensure that interventions are genuinely inclusive of all impairment groups, in line with the rights-based approach.

TheWashingtonGroupShortSetofQuestionsdonotmapdirectlyontospecificimpairmentgroups,suchaspersonswithDownsSyndromeorAlbinism.Nevertheless,thehouseholdsurveyincludedspecificquestionsaroundEpilepsy,Albinismand“LittlePeople”.

BOX 3 Specific impairment types

TABLE 1 Prevalence of disability by impairment type in Uganda among adults

Persons with Albinism represent

0.02% of the population

and “Little People” represent

0.1%

Living arrangements4

InUganda,thelackofaformalsafetynetmeansthataperson’sfamily,aswellastheircommunity,arethemostlikelytoofferthemfinancial,physicalandemotional

support.Livingarrangementsthereforeprovideagoodindicationofboththecarethatapersonwithadisabilityprovidesandthecarethattheyreceive.Howthecarenetworkmanifestsitself,however,isdependentonanumberoffactors,includingaperson’ssocialroles,age,impairmenttypeandtheirlevelofdifficultyinafunctionaldomain.

InUganda,personswithdisabilitiesaremorelikelytoliveinlargerhouseholdsthanpersonswithoutdisabilities.Thismaybebecausetheylivewithotherrelativesinordertoreceivecareorbecausetherearemorechildreninthehousehold.Indeed,duetothelimitedstatesupportthatUgandansreceive,childrenare

oftenseenasaformofsecurity–an“investmentinthefuture”–andsolivingwithandhavingmorechildrenisameansofinvestingincare.Apersonwithadisabilityismostlikelytobelivinginahouseholdthatconsistsofacouplewithchildren,andafterthis,inathree-generationhousehold.

Largerhouseholdsdonotnecessarilymeanthatapersonreceivesmoresupport.Suchhouseholdsaremorevulnerabletoshocksandtofallingintopoverty,bothdueovercrowdingandtothehighernumberofyoungerandolderhouseholdmemberswhoaredependentonmembersofworking-age.Thishasimplicationsforhowmuchfinancialsupportandphysicalcareapersonwithadisabilitycanreceive.Likewise,ifthepersonwiththedisabilityisalsoearninganincomeor providing care, they may have a disproportionate care burden if they live in a large household.

Livingarrangementsdonotalwaysprovidethefullpicture.Anolderpersonwholivesalonemayactuallybereceivingcarefromagrandchildwholivesnearby.Likewise,agranddaughter

maylivewithhergrandmother,butherparents–whostayinaneighbouringhouse–arepayingforherlivingcosts.

IMPAIRMENT TYPE ADULT UGANDANS

Difficultywalkingorclimbingstairs 4%

Difficultywashingalloverordressing 2.4%

Difficultyseeing 4.5%

Difficultyrememberingorconcentrating 2.6%

Difficultyhearing 1.9%

Difficultycommunicating 0.6%

UGX

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My children are [my] wealth as [I] do not have anything else

''

MARIE, AGED 41, who has a disability and is also the mother of a child with a disability

1 2 1 3

In urban areas, 37% of households with a member with a disability are female-

headed compared with 28% of households without a person with a disability

In rural areas, the proportion is 34% (compared with 25% without a member)

Households with a member with a disability are also more likely to be headed by a woman than households without a member with a disability. The reasons for this are complex, but gender is a significant factor around caring responsibilities and social norms. For example, women are more likely to be the main caregiver of children if they have separated from their partners, and this is the case both for women with disabilities, as well as mothers of children with disabilities. Older siblings who take care of younger siblings are more likely to be female, and widowed grandmothers are more likely to care for the children of their

grownup offspring who are working elsewhere, compared with widowed grandfathers. The disparity also points to the fact that there are more older women than older men, many of whom develop impairments as they grow older.

Female-headed households operate a complex position in terms of vulnerability. On the one hand, they often have fewer assets and less income and may be more socially excluded within society. On the other hand, despite their limited resources, the female head is often able to be more autonomous within her household.

A typical house in rural Uganda. Kitwa, Uganda.

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Poverty and standards of living

5

It is well established that poverty and disability are linked. Those who live in poverty are more likely to have a disability, while those with a disability are much more

likely to be living in poverty.Using Uganda’s national poverty

lines, the poverty rate for individuals living in a household with a member with a disability is 31 per cent, compared to 28 per cent for households without a person with a disability. Although these figures are fairly similar, they do not account for the power dynamics within a household which may mean that a person with a disability lives in a greater state of poverty than others in the household. Furthermore, as is discussed below, the additional costs of living with a disability often lower a household’s standard of living.

Poverty rates for persons with disabilities also vary depending on a number of characteristics. For example, persons with communication difficulties are more likely to live in poverty than any other group. Poverty is also linked to the severity of the

FIGURE 3 Poverty and disability are interlinked

FIGURE 4 Percentage distribution of consumption from “poorest” to “richest” individuals with disabilities using international poverty lines

30%ofpersonswho“cannot

dooneormorefunctional

domains”liveinpoverty,

comparedto26%ofthosewhohave

“atleastalotofdifficulty.”

Closeto15%ofhouseholdswithamemberwithadisability

havepoordietarydiversity

consumption,and55%haveeitheralowormediumdietarydiversity

score.

Resourcedistributionwithin

ahouseholdisnotequal:Amaleheadof

householdwhohasadisabilityislikelytohavemoreaccessto

resourcesthananolderwomanwith

adisabilitywhoisnotthe

householdhead.

impairment, and those who “cannot do” at least one functional domain are at greater risk of poverty than those who “have a lot of difficulty”.

While 26 per cent of persons with disabilities live below the national poverty line, this should not lead to the conclusion that the remaining 74 per cent live a life of comfort. As Figure 4 indicates, using international poverty lines, it is clear that most Ugandans are living in a state of vulnerability.

Around half of Ugandans in households with persons with disabilities are living in extreme poverty (less than UGX 2,400 per person per day), and over three-quarters are living in poverty (less than UGX 4,000). Furthermore, over 80 per cent of persons with disabilities live on less than UGX 8,000 per day. This is a meagre amount and demonstrates that even if a person with a disability is not considered to be the “poorest” in the country, their standard of living is likely to still be low. Poverty is therefore a dynamic situation, and the majority of persons with disabilities are vulnerable to shocks.

MostUgandansliveinbrickormudbrickhouses,whicharenotadaptedtotheneedsofpersonswithdisabilities.Forexample,51%ofpersonswithdisabilitiesuseapitlatrinewithoutaslab,whichwillbedifficulttouseiftheyhavevisualorphysicaldifficulties.

BOX 4 Housing conditions for persons with disabilities

Disability

Vulnerability to poverty

and ill-health

Poverty

Denial of opportunities for economic,

social and human

development

Social and cultural

exclusion and stigma

Economic, social and

cultural rights are violated

Reduced participation in decision-making and

denial of civil and political

rights

Above UGX 12,450 a day ($10 PPP)

UGX 6,850 - 12,450 a day ($5.50 - $10 PPP)

UGX 3,990 - 6,850 a day ($3.20 - $5.50 PPP)

UGX 2,370 -3,990 a day ($1.90 - $3.20 PPP)

Below UGX 2,370 a day ($1.90 PPP)

Living in households without persons with

disabilities

Living in households with person (s) with

disabilities

SOURCE: BASED ON BANKS AND POLACK (2014)

1.6 1.34.5 7.5

17.8 13.9

26.1 26.3

50.0 51.1

100%

90%

80%

70%

60%

50%

40%

30%

20%

10%

0%

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ADDITIONAL COSTS OF LIVING 5.1.1 DIRECT COSTS FOR PERSONS WITH DISABILITIES CAN INCLUDE:

5.1

A lthough households with or without persons with disabilities have similar poverty levels, the real levels of poverty

in households with members with disabilities are often underestimated due to the additional costs of disability. In order to maintain a similar standard of living or to perform specific activities, persons with disabilities often incur additional costs in comparison to their peers without disabilities.

As a result, when two households with the same level of expenditure are compared, the household with a member with a disability has a lower standard of living. Therefore, in order to ensure that the gap does not widen, households with a member with a disability likely need to be provided with additional resources.

Lower income countries tend to present lower additional costs for persons with disabilities. This is because the additional resources, services, equipment etc., that they need, may not actually be available.

HOUSEHOLDHouseholds that include a member with a disability spend close to 39 per cent more on household expenses than households without a member with a disability. This corresponds to approximately UGX 16,500 per month.

EDUCATIONAlthough primary education is free in Uganda, there are a range of other costs associated with education, including transportation to and from school, textbooks, uniforms, school supplies, school management and exams fees. On average, children with disabilities spend 31 per cent more than children without disabilities on other education-related costs. This is further affected by the level of impairment, and children with higher levels of difficulties spend on average around 50 per cent more than children without disabilities on education costs. These costs can make going to school prohibitive for many families with a child with a disability.

Even if I work all day, I can’t get the same as what my neighbour is getting. I cannot upgrade. We disabled people are like old people. We can do less, and we aren’t as strong. I look at my friends who I was at school with, my age-mates. Some of them have got big farms and businesses. All my efforts are used just getting by. The government says, ‘leave no one behind’ but I am unable to catch up.

''

MIRIAM, 46 YEARS OLD, who has a physical impairment

FIGURE 5 Direct and indirect additional costs of disability

BOX 5 Transport costs too high to attend school

Mercyhasmobilitydifficultiesandstrugglestowalktoschool.Inordertotravelthehalfkilometre,shewouldneedtouseaboda boda,whichcostsUGX10,000eachway.ThisistooexpensiveforMercy’sfamily,andasaresult,shedoesnotattendschool.

ADDITIONAL COSTS OF LIVING

UGX

DIRECT COSTS

HealthcareLoss of productivity, time and earnings for the household (in part, due to the provision of personal assistance)Lost economic opportunities due to stigma and descrimination

Stress and social isolation

Education

Mobility

Transport

Childcare

INDIRECT COSTS

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Americans from Gallaudet University leading a training camp at a school for the Deaf. Uganda.

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Less than 3% of persons with disabilities who receive personal

assistance pay for a carer

In many high-income countries, family members are compensated for their loss of

income through a Carer's Benefit

Children with disabilities aged between 2 and 4 years are more likely to receive care on a daily

basis, as are adults who cannot perform one or more

functional domain

5.1.2 INDIRECT COSTS

FIGURE 6 Health-related costs by wealth quintile

Assistive devices can be prohibitively expensive for persons with disabilities. For example, a wheelchair costs between UGX 450,000 and 600,000. In comparison, the Senior Citizens Grant provides UGX 300,000 per year to a recipient.

The indirect costs of disability relate to a number of issues such as a decrease in productivity, a loss of education and employment opportunities,

insufficient investments, and foregone economic activities. They also include more intangible costs such as stress and social isolation. As such, they are harder to measure than direct costs.

Overall, 37 per cent of persons with disabilities require personal assistance, with young children and older persons the most likely to need care. Furthermore, persons with difficulties in self-care are more likely to receive personal assistance than any other functional domain.

Personal assistance is predominantly provided by other household members, and only 11 per cent of carers from outside the household are non-relatives or from the government. Given that personal assistance is mostly provided on a daily basis, for many this is more than a full-time job, and yet, in general, it is unpaid. Not only does this represent a significant burden of care, it also means that carers lose out on earning a full income, and they may even experience psychological issues such as stress.

Persons with disabilities may also experience stress (or even trauma) from the discrimination and stigma that they experience. They may also be disincentivised from accessing government services due to how they have been treated in the past. Furthermore, as is discussed further below, systemic discrimination against persons with disabilities is a major cause of loss of economic opportunities.

Consequently, although hard to quantify, indirect costs have significant negative impacts on persons with disabilities and their families.

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40,000

80,000

120,000

160,000

Lowest 2ndquintile 3rdquintile 4thquintile Highest

Hea

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(cur

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UGX

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Wealth quintiles

Withdisability Nodisability

HEALTHHealth-related costs include consultation fees, medicine, clinic charges, fees from traditional healers and transportation costs. Overall, persons with disabilities who had experienced an illness or injury in the last 30 days spent UGX 60,000 on treatment, compared to less than UGX 40,000 for persons without disabilities. Furthermore, households that include persons with disabilities experience much higher rates of health-related shocks but are more likely not to do anything about it due to the cost.

A consequence of this could be that illnesses go untreated, and conditions worsen.

Notably, persons with disabilities in the wealthiest quintile pay significantly more than their counterparts in the other four quintiles. It is likely that only the wealthiest in Uganda have the means to pay for all (or at least, the majority) of what they need, which therefore results in much higher health costs.

As Figure 6 indicates, persons with disabilities in the wealthiest quintile pay significantly more


ABUSE AND VIOLENCE

CHANGING MINDSETS

6.2

6.3

Both men and women with disabilities are more likely to experience some form of abuse or violence across the lifecycle than people without disabilities. The qualitative research raised examples of children with disabilities who are hidden away from the community and segregated within the family. This is often a combination of both shame as well as fear that the child will be harmed.

Young girls with disabilities are particularly vulnerable, as they are often the target of opportunistic men, many of whom abandon them when they become pregnant. Sometimes these men offer little support and may even be abusive. According to the DHS 2016, around 21 per cent of men with disabilities had experienced some sexual abuse in their life, compared to 8 per cent of men without disabilities, and 34 per cent of women with disabilities had experienced some form of sexual abuse compared to 22 per cent of women without disabilities.

72 per cent of persons without disabilities believe that there is some degree of prejudice against persons with disabilities in Uganda. Furthermore, 48 per cent think that persons with disabilities can lead as full a life as those without. With the correct measures, discriminatory attitudes can decrease in Uganda, and it is likely that mindsets are already shifting.

BOX 7 Sexual abuse of young girls

BOX 6 Segregated within the family

Faith,wholivesinLamwoandhasadisability,explainedthatwhenshewas15yearsold,herunclewouldbringhisfriendtothehousetohavesexualintercoursewithher.Themanwasnotabletohavechildrenwithhiswife,andwhenFaithconceived,theytookhertolivewiththemuntilthebabywasborn.Duringthistime,thewifephysicallyabusedFaith,andoncethebabywasborn,thecoupletoldhertoleavethechildandreturntoherfather’shome.However,beforethiscouldhappen,thehusbanddied,andFaithmanagedtoescapetoherfather’shousewithherson.

Emily,whohasalbinism,livesinKampala.Perceivedbyherfatherandherstepmothers(hermother’sco-wives)asa“ghost”(mugambwa muzimu)shewassegregatedfromtheothermembersofthehousehold,unabletoeatwithherco-siblingsorwalkoutsidewiththem.Whenshewassevenyearsold,herfatherlockedherina“shrine”(essabo)wheresheliveduntilsheescapedattheageof14.Duringthistime,herfatherandalocal“witchdoctor”(myeawomwgando)tookpaymentsfromclientswhowouldvisitthe“girlghost”,seekingprayerstotheancestors.


2 1

6Social norms and expectations

Menandwomenwithdisabilitiesaremostlikelytobelivingasacouplewithchildren,however,itisnotclearifthesearecohabitingcouples,orinformalmarriages.Beinglegallyrecognisedasthenextofkingivessomesemblanceofprotectiontowomenwhentheydivorce,unlikeinformalarrangements.Propertyinheritance,forexample,canbeaverycontestedareaforwomen,especiallyiftheyarenotformallymarried,oriftheirhusbandhasasecond(orsubsequent)wife.

Awoman’scapacityforautonomyisalsoseverelyrestrictedbygendernorms.Whilewomenwithandwithoutdisabilitieswilloftenmakefinancialdecisionswithregardtothehousehold,

decisionsthatinvolvegreateramountsofmoneyarenormallymadebytheheadofthehousehold,whoisoftenaman.Whilstwomeninfemale-headedhouseholdsmayhavemoreautonomy,theycanalsobemorevulnerableduetohavinglessincome(whilstcaringfordependents)andfewerassets.

Womenwithdisabilitiesarealsomorelikelytoexperiencestigmaanddiscriminationthanwomenwithoutdisabilities.Genderanddisabilitythereforeintersect,andwomenwithdisabilitiescanfacedoubleoreventriplediscrimination.Forexample,womenwithdisabilitiesareatgreaterriskofexperiencingsexualviolencecomparedtowomenwithoutadisability.

Socialnormsandexpectations–especiallywithregardtostigmaanddiscrimination–canhaveasignificantimpactonthevulnerability(andconverselyresilience)ofpersonswithdisabilitiesacrosstheirlifecycle.WhilediscriminationonthebasisofdisabilityisoutlawedinUganda,therearestillmanycasesofprejudiceandmisunderstandingwithincommunities.

GENDER NORMS6.1

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A man dances in the street.

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Household shocks7

Not only are households with members with a disability more vulnerable to shocks, but pre-existing conditions, including

poverty, age, gender and even severity of impairment, may also increase vulnerability. The most serious shocks experienced by households including a person with a disability are related to health, agriculture, climate and food.

When a shock occurs, the most common response by a household with a member with a disability is to not respond to the shock, and this inaction

FIGURE 7 Most significant shock experienced by households with persons with disabilities during the past 12 months

Seriousillnessoraccidentofhouseholdmember(s)

Drought

Agriculturerelatedshocks

Unusuallyhighpricesforfood

Irregularrains

Theftofmoney/valuables/Assets/Agriculturaloutput

Deathofotherhouseholdmember(s)

Reductionintheearningsorbusinessfailureofhouseholdbusiness

Floods

Conflict/violence

Deathofincomeearner

Break-upofhousehold

Birthinthehousehold

Reductionintheearningsofcurrentlysalariedhousehouldmember(s)

Lossofemploymentofpreviouslysalariedhouseholdmember(s)

Landslide(s)

Earthquakes

Endofregularassistance/Aid/Remittances

Other

5 10 15 20 25Percentage of households

can cause the household to fall into a greater state of vulnerability. The next most common responses are to rely either on unconditional support from relatives or to use savings instead. Therefore, without appropriate state support, households are likely to not be able to fully recover from a shock. Notably, less than 1 per cent of households reported receiving unconditional support from the government in response to the most serious shock they had experienced in the last year.


A former policeman plays an instrument outside his home. He began to lose his vision in old age, and now does not receive a pension. Mubende, Uganda.

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Householdswithoutpersonswithdisabilities

Householdswithpersonswithdisabilities


Disability across

the lifecycle

8 FIGURE 8 Vulnerabilities and resiliencies across the life course


T herearearangeofbarriersthatcreateconditionsofvulnerabilityforpersonswithdisabilitiesaswellasopportunitiestostrengthen

resilienceacrossthelifecycle.AsFigure8demonstrates,whilsttheseresilienciesandvulnerabilitiesarenotstatic,theycanfollowapersonthroughouttheirlifecycle.

Cross-cutting

Cross-cutting

Cross-cutting

Cross-cutting

Cross-cutting

Cross-cutting

Cross-cutting

Cross-cutting

Cross-cutting

Cross-cutting

●Parental/caregiversupport

●Caregiveraccesstohealthcare

●Goodhealth/nutritionstatus

●AvailabilityandaccesstoGovernmentorNGOsupport(includingEarlyChildDevelopment)

●Gender●Location

●Accessandavailabilityofeducation(andotherbenefits,includingvaccinations)

●Startingschoolwithagecohort

●Marriage-canprovidesupportformenandwomen

●Parenthood-canbeapositiveexperienceformenandwomen

●Landownership/access●Abilitytowork●Workingenvironment

-includingpension,sicknessbenefitsetc

●Grandchildrenorotherfamilysupport

●SeniorCitizensGrant

●Lackofgrandchildrenorotherfamilytoprovidesupport

●Deathofaspouse●(Lackof)inheritance●Lackoflandoraccessto

land●No/limitedabilitytowork●Precariousworking

environment-accidents,lackofpensionandsicknessbenfitsetc.

●Marriage-canalsobeasubjugatingexperience,especiallyforwomen

●Parenthood-canbeexpensiveandparentsmaystruggletoprovidecare.Womenmaybeabandonedandlefttocareforchildrenwithoutthefather

●Lackofaccessandavailabilityofeducation(andotherschool-basedbenefits)

●Delayinstartingschool●Droppingoutofschool

●Abandonment/Deathofparent

●LackofEarlyChildDevelopment

●Poorhealth/nutritionstatus

●Lackoffamilysupport●Lackofothersupport

mechanisms

VULNERABILITIES

RESILIENCIES

EARLY CHILDHOOD

EARLY CHILDHOOD TO SCHOOL AGE

SCHOOL AGE TO YOUTH

YOUTH TO WORKING AGE

WORKING AGE TO OLD AGE

OLD AGE

2 4 2 5

2 6 2 7


It is vitally important that the barriers that a person with a disability faces are addressed when they are young, for past and future vulnerability are intimately

linked. Low-incomes, exclusion and limited access to services can hinder a child’s ability to realise their full potential when they are adults, but with the right state action, they can instead be given the best start to life.

Most impairments acquired in childhood happen after birth, for example from endemic childhood diseases such as (cerebral) malaria, as well as vaccine-preventable diseases. This may include potentially avoidable conditions, which can worsen with limited access to healthcare and/or rehabilitation. Disability among babies and young children is often viewed as a curse, or as a consequence of something the parents – especially the mother – did or did not do, which can result in attributions of blame and abandonment.

The proportion of children with disabilities living with their birth mother declines with age, indicating that as they grow older, some mothers may find it more challenging to look after them. The reasons for this may include the lack of access to support and services, as well as stigma and discrimination. Mothers may resort to leaving their children unattended while they work, or leaving their children with other family members, in particular grandparents, many of whom are struggling themselves.

One of the best starts to life is to receive an education. However, there is an education gap in Uganda, with 74 per cent of children with disabilities aged 5 to 18 attending school, compared

CHILDHOOD (AGED 0-17)

8.1

●Impairmenttypeimpactsaccesslevelstoeducation.

●54%ofchildrenwithdifficultiesinself-careand52%ofchildrenwithdifficultiescommunicatinghaveneverattendedschool.Thereislikelyverylittlesupportavailableforthesechildren,asmanywouldrequireanassistantinordertoattendschool.


A father will say what is the problem? We will have other children. He can push this one aside. He can say ‘let malaria take this one'

''Mother of a child with disability

Young girl attending Mulago

school for the Deaf. Kampala, Uganda.

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Children with disabilities spend more on education related costs such as transport and school supplies than children without disabilities.

they need to drop out in order to earn money. A similar drop is seen with girls when they reach 15 years of age, and this is due to reasons such as needing to work, menstruation, pregnancy and early marriage.

Even when children with disabilities do attend school, it should be emphasised that it is often poor quality because it has not been designed to accommodate their specific needs. Implementing a fully inclusive education system requires systemic changes and wide-ranging reforms, including by increasing the education budget that is directed towards children with disabilities.

with 83 per cent of children without disabilities. School attendance also declines with age: close to 40 per cent of boys aged 12 to 13 years are not in school, and this is likely because

2 8 2 9


YOUTH (AGED 18 – 30)8.2

The challenges faced as children are carried through to later life. For example, young persons with disabilities have lower literacy

rates compared with their counterparts who do not have a disability.

The lower levels of educational attainment for persons with disabilities reduce their chances of accessing decent employment. Although unemployment levels are high for all young Ugandans – whether they have a disability or not – young persons with disabilities are still less likely to be employed. Furthermore, the more severe the impairment, the less likely the person is to be economically active, with women affected more than men. This is a reflection of systemic challenges in accessing the labour market, and among those who cannot perform a functional activity at all, 24 per cent of young men are in employment, compared with only 3 per cent of young women.

Even when persons with disabilities do have the necessary qualifications, they can struggle to find employment in comparison to their peers without a disability. This is due to a number of reasons, including discriminatory attitudes, limited infrastructure including transportation, and the workplace not being adapted to their impairments.

It is around this age that young people, particularly women, begin relationships and have children. Gendered attitudes are entrenched from a very young age, and women who marry young often endure lasting health problems and other consequences. Young women with disabilities also often have relationships

with men who are older than them and who they are not married to. If children result from the partnership and the parents then separate, the father often provides little to no support. Young women (and their children) are then at an even greater risk of vulnerability, and some leave their children with relatives either because they do not have the capacity to bring the child up themselves, or because they must find work elsewhere.

During the study, women often

expressed happiness that they had children, in part because they believed that their children would look after them in the future, and in part because they felt as if they had fulfilled their social role of being a “woman” in the community. However, depending on the type and severity of the impairment, having children can often make them much more dependent on family members to support them, which can also hinder their children’s life chances in turn.

Impairmenttypealsoimpactsemploymentrates,andyoungpersonswhohaveself-careorcommunicationdifficultiesarethemostlikelytohaveneverbeenemployed(78%and72%).

EMPLOYMENT WANTED

I feel so discouraged as I have a diploma in Environmental Science but still, I cannot get a job. No one will employ me because I am blind… this is what? Discrimination, yes and stigmatisation.

''

DANNY has only been employed once, as a receptionist for an organisation for persons with disabilities. He is currently unemployed.

BOX 8 Abandoned by the father

Una,whois20yearsold,isblindandalsohasaphysicaldisability.

Whenshewas18yearsold,shehadabriefrelationshipwithalocalboywhomsheknewandtrusted.SheeventookaHIVtestathisbidding,whichhepaidfor.Hetoldherhiswasnegativeandshebelievedhim.UnadidnotdiscloseherownHIVstatus.

Whenshediscoveredshewaspregnant,shewasinitiallyhappy,butwhenhermotherconfrontedtheboy’sparents,hedeniedallknowledgeandhisfamilymovedawayfromthearea.Una’schildisnowtwoyearsoldandisbeingbroughtupmainlybyhergrandmother.

Persons with disabilities play football at Kyambogo University sports ground. Kampala, Uganda.

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WORKING AGE ADULTS (30 – 60 YEARS)8.3

The challenges experienced by young Ugandans with disabilities are replicated when they reach 30 to 60 years of age. Similar patterns

of employment are apparent: persons with disabilities are less likely to have ever worked than persons without disabilities, and women are less likely to have worked than men. Impairment type also impacts employment chances, and nearly two-thirds of people with communication impairments have never been employed. By contrast, people with walking and visual impairments are much more likely to have been employed.

By this point in their lives, persons without a disability are more likely to be married than those with a disability. There are stark gender differences as well: 43 per cent of women with a disability are in a monogamous marriage, compared with 67 per cent of men. Furthermore, women are much more likely to be separated or divorced than men. Impairment type does not seem to impact the proportion of people in monogamous marriages, although people with communication difficulties are more likely to have never married compared with other difficulty domains.

One of the main reasons for this disparity in marital status is how persons with disabilities are perceived to be fulfilling their social roles. If a woman who has a disability is perceived to be unable to be a carer, mother or wife – for example, if she has severe communication difficulties, or cannot do housework – she is less likely to be

FIGURE 9 Marital status of adults 30-60 years by disability

Morethan¾ ofwomenaged30–60yearswhocannotperformatleastonefunctionalactivityhave

neverworked.

able to marry. Similar sanctions are not placed on men, and if a man has assets, and can provide bridewealth and pay for labourers, he is thereby seen as a provider and consequently, is a viable marriage prospect. Men with disabilities who are poorer are therefore less likely to marry because they are not able to fulfil this role and can struggle to be accorded a similar social status within their communities. For men (and women) with disabilities, bridewealth may be higher than for a person without a disability, as the spouse may face greater demands on their labour. H

UG

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Women collecting their cash transfer. Uganda.

EMPLOYMENT WANTED

0 20 40 60 80 100

Mal

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mal

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Percentage of adults 30-6- years in each group

Tota

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Inamonogamousmarriage

Widow/Widower Nevermarried

Inapolygamousmarriage Divorced/separated

3 2


Michael and Francis’s stories in Box 9 show how the possession (or lack) of resources when they were younger affected their marital status and their life trajectories.

A supportive marriage is therefore a safety net, but men with disabilities are more likely to benefit.

Indeed, men with disabilities are most likely to be cared for by their wives, whilst women are most likely to be cared for by a son or daughter. Care is gendered, and it is therefore more acceptable for a woman to earn money in order to provide financial support to her household, than for a man to cook or clean. Consequently, a married woman will likely still need somebody who is not her husband to provide assistance if there are household tasks that she cannot do herself. A woman’s vulnerability may also be heightened if her husband has more than one wife, especially if the other wife is favoured over her.

Of course, many persons with disabilities of working age are carers themselves, and they continue to both earn money and provide support for other family members, in particular children and older relatives. The lack of

Box 10 Marriage as a “coping strategy” for men

Box 11 The indirect costs of caregiving

Edgar,whohasbeenblindsincechildhood,echoesthefeelingsofmanymenaboutbeingandstayingmarried:“Ifyouhavenowifewhoisreadytofeedyouforfreeyoucanbecomeabeggar!”.Forsomemen,marriageisa“copingstrategy”,andawaytoensuretheyhavesomeonetolookafterthemandcareforthem.

Asdiscussedabove,careofpersonswithdisabilitiesisprimarilyprovidedbyfamilymembers–inparticular,womenandgirls–andthishasanumberofindirectcosts.Caregiversmaynotberegularlyattendingschool,orevenworkingortraining.However,iftheydonothaveadisabilitythemselves,theywillslipthroughthenetofdisability-specificprogrammes.

Box 9 Marriage prospects and wealth for men with disabilities

Michaelisinhisseventiesandisunabletostandaftercontractingpolioinchildhood.Whenhewasyounger,hisfamilyinvestedinbridewealthforhim,whichenabledhimtomarrytwowomen.Duetohismarriages,heisabletoparticipatesociallyinhiscommunitybecauseheisseenastheheadofthehousehold.Throughthis,hehastherighttocontrolthelabourofhiswivesandchildrenandisthereforeconsideredtobeeconomicallyactive.Hesustainshislivelihoodbymakingbeehives,whichhesellstoothermenwhomaketheirlivingfromthesaleofhoney.Withouthiswives,Michaelwouldhavestruggledtosecurealivelihoodormaintainhisownhousehold.

Incontrast,Francisisan83-year-oldmanwithaseverephysicaldisability.Hehasnevermarriedbecausehecouldnotaffordto,andashealreadystruggledtoearnaliving,hedidnotwanttotakeonanyadditionalresponsibilities.However,hewouldhavelikedtohavehadchildren,andevenacceptedresponsibilityforsomeofthepregnanciesinhisvillage,whetherhewasthefatherornot.Despitethis,oncethechildrenwereborn,theyweregiventoothermen.Theseactionsupsethimandheeventually“switched his mind away from women and producing children”.Henowlivesaloneinpoorconditions,survivingmainlyontheSeniorCitizensGrant.Hehaslimitedassetsanddoesnotownanyanimals,notevenachicken.

Nambi Scovia, a 42-year-old resident of Butaaswa village, operating a sewing

machine. She does tailoring as her small business. Buyende district, Uganda

3 3

assistive devices, inclusive workplaces and employment opportunities, however, may make it challenging for them to engage in consistent and reliable income-generating activities.

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OLDER PERSONS (60+)8.4

Though not inevitable, people often experience a decrease in their functions as they age, which in turn affects both their need for support and

care, as well as their ability to work and earn their own income. Without sufficient support, and with shrinking care networks, many older persons are often not able to realise their social roles as “elders” in the community, in which instead of engaging in physical labour, they guide the community by instilling good morals, mediating conflicts and providing advice. In reality, many older persons are continuing to earn income and engage in housework, because they have no other choice.

Older persons with work experience – regardless of whether they have a disability or not – are most likely to be either self-employed or an own-account worker. This implies that rather than retiring, they will continue working until their ill-health or functional difficulty reaches a stage in which they are forced to stop. As discussed below,

and physical care. It should also be emphasised that many older women continue to manage the household and provide care for other members of the family, and as they grow older and frailer and need to receive more care themselves, may start to feel like burdens on other family members.

Older persons with disabilities are most likely to be living with children, grandchildren or other relatives. It has long been the case in Uganda that young children are sent to live with their grandparents, to care for or learn from them. However, crises such as the HIV/AIDs epidemic, in which a large number of children were orphaned, as well as an increasing need for parents to migrate in search of work, have obliged a greater number of grandparents to become the primary caregivers of their grandchildren. This can prove challenging, both in terms of providing enough physical care and having enough income to provide financial support.

the Senior Citizens Grant is currently being rolled out nationally to all older persons aged 80 years and above. Consequently, there are many people below the age of 80 who are in need but missing out.

In general, older persons who are more satisfied with their lives own more assets – and so continue to be decision makers or can pay labourers to support them – or they receive sufficient financial and physical care from their family members and feel loved and respected as a result.

For older persons living alone, there is little available social care to

FIGURE 10 CURRENT WORKING STATUS OF ADULTS AGED 60+ YEARS WITH WORK EXPERIENCE

FIGURE 11 LIVING ARRANGEMENTS OF OLDER PERSONS 60+ YEARS

15% of older men with a disability are in a polygamous marriage, compared with 6% of women.

68% of older women with a disability are widowed, compared with 15% of men.

0 10

Livingwith

child

ren/

child

ren-in-la

wLivin

gwith

grandchild

ren

(with

outchild

ren)Livin

gwith

otherrelativ

es

Livingalone

Livingwith

spouse

only

Livingwith

non-relativ

es

20 30 40 50 60

0

20

40

60

80

100

Percentage of adults 60+ years in each group

Perc

enta

ge o

f old

er p

erso

ns 6

0+

Self-employedorown-accountworker

Workingasunpaidfamilymember

Retiredbecauseofahealthcondition

Notworking

Retiredduetoage

Workingforwages

Total

Withdisability

Nodisability

Total

Withdisability

Nodisability

support them, and many may struggle to do chores and obtain sufficient food. Women are substantially more likely than men to be widows, and women with disabilities are the most likely to be widowed. While widowed older men may re-marry, or have younger second or subsequent wives, prevailing social norms do not allow older women to do the same. As a result, women are more likely to not live with a spouse, which can put them in a more vulnerable state, especially if they have access to fewer assets or are in need of financial

3 6


Building resilience for persons with disabilities

9

Persons with disabilities, along with their caregivers, possess a wide range of skills and talents that should be harnessed and

maximised in Uganda. But the barriers that they face are hindering them from realising their full potential, and many are being left behind. There are a range of factors that can enhance an individual’s resilience to unexpected shocks, and a key part of this process is state intervention. State supported services – by addressing the needs of persons with disabilities across the lifecycle – can be transformative for everyone. Services that break down barriers, provide dignified treatment, create effective linkages, and increase capabilities not only enable persons with disabilities to survive, but also to thrive.

A great deal has already been done in Uganda to support persons with disabilities, including political representation and buy-in for disability issues across the government sectors. However, the vast majority of services and resources for adults and children with disabilities are ad-hoc and provided by non-state actors. This is not sustainable, and the Government of Uganda has committed to addressing this gap.

A “twin track” approach is needed, in which an overarching and consistent

strategy to mainstream disability across all sectors is implemented, alongside targeted interventions to ensure that specific needs are addressed. In addition to providing regular financial (and other) support, a broader approach to bolstering resilience is required, particularly for individuals and families identified as being particularly “at risk”.


Figure 12 Support required by persons with disabilities cuts across a range of services

Box 12 Political representation

Thepoliticalrepresentationofpersonswithdisabilitieshasbeenquiteeffective,boththroughthecouncillors,aswellastherepresentativesoftheNationalCouncilforPersonswithDisabilities.(NCD).However,theNCDisoftenhinderedbyalackofpowerandresources.Theumbrelladisabledpeople’sorganisation,theNationalUnionforPersonswithDisabilitiesinUganda,hasalsobeenapowerfuladvocateforchange.However,asyet,itisnotclearthatthesepoliticalactionshaveconvertedintosocialactions,orindeedthatthepoliticalrepresentationhasachievedsocialinclusion.

EmploymentSocial Security

Education and Training

Financial Services

Social Care

Health CareTransport

Housing

Personwith

disability

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A young boy walking with

crutches. Uganda.

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Anti-discrimination legislation

Anti-discrimination legislation

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KEY GAPS WHICH SHOULD BE ADDRESSED TO INCREASE RESILIENCE

9.1

THERE IS A LACK OF ASSISTIVE PRODUCTSThere is currently limited provision of assistive devices across Uganda, with only 13 per cent of persons with a disability using devices.

THERE ARE NO HOUSING SOLUTIONS FOR PERSONS WITH DISABILITIESPersons with disabilities seldom live in houses that have been adapted to their needs. Furthermore, many live in informal settlements, that are at risk of sudden and extreme flooding, and have sporadic utilities and refuse collections. There are currently no government provided housing solutions for persons with disabilities in Uganda, despite policy commitments to support “disadvantaged groups”.

THERE IS A LACK OF EDUCATION AND TRAININGThe Government of Uganda advocates for inclusive education from early childhood right through to tertiary level, however, the Special Needs and Inclusive Education Policy to determine this is still under review. Furthermore, the MGLSD oversees five rehabilitation and training centres which function

as residential vocational training institutions for persons with disabilities. Training is based around courses such as carpentry, metalwork, beauty and tailoring. However, due to budgetary constraints, none of the centres are operating at full capacity, and currently, the curriculum is not aligned with wider Business, Technical and Vocational Education and Training policies or practices. There are also structural issues with the buildings, and cases of land grabbing.

PERSONS WITH DISABILITIES ARE NOT RECEIVING REGULAR INCOME SUPPORT AND THEIR ADDITIONAL COSTS ARE NOT BEING COVEREDIn order to support the inclusion of persons with disabilities and enable them to enjoy the same standard of living as persons without disabilities, many countries provide a range of social protection interventions, to cover both the loss of income and the additional costs of disability. In Uganda, however, there is currently limited income support across the lifecycle and what is available does not adequately address the vulnerabilities and risks of persons with disabilities.

Key gaps include the lack of income support for children with disabilities, thereby preventing children from having the same start to life as children without disabilities. There should also be a disability benefit for working age adults, that provides income support to the small number who cannot work and compensates those who can work for the additional costs they experience.

Currently,thereisnounifiedapproachtodisabilityassessmentinUganda.Forexample,assessmentforthePublicSectorPensionScheme(PSPS)disabilitypensioniscarriedoutbygovernmentmedicalpersonneloftheMedicalAssessmentBoardundertheMinistryofHealth.Meanwhile,CommunityDevelopmentOfficers(CDOs)–whohavenotreceivedappropriatetraining–also“assess”

personswithdisabilitiesforaccesstograntsandotherservicessuchastheSpecialGrant.

Aswellashavingnoformalsystemtoassessdisability,Ugandadoesnotcurrentlyhaveasystemofregistrationofpersonswithdisabilities.

Bothofthesegapscreateadministrativebarriersthatpreventmanypersonswithdisabilitiesfromaccessingservices.

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An older woman

smiling. A village

near Jinja, Uganda.

Box 13 Assessing disability

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Figure 13 Disability specific and disability relevant schemes that Uganda should have in place

The Special Grant for Persons with DisabilitiesThis provides one-off grants to support a small number of groups of persons with disabilities and their caregivers to undertake income generating activities. However, it should not be considered a social protection scheme as it provides a one-off lump sum payment. No immediate support is given for health or education expenses, unless recipients sell of their assets.

THERE IS A LACK OF SUPPORT FOR CARERSCarers of persons with disabilities are often relatives, who input significant hours to provide care for free. The lack of state social care, coupled with the absence of a care/support benefit, means that for many families, a dependency on care can lead to a vicious downward spiral of vulnerability.

The Senior Citizens Grant This is a tax-financed, old age

pension, and is currently worth UGX 25,000 per month. It has been designed to provide income support for older Ugandans who did not contribute to the formal sector, and it is currently being rolled out nationally to all older persons aged 80 years and above.

Although ground-breaking, the current design of the Senior Citizens Grant is not able to fully address the financial needs of older persons with disabilities. The real value of the transfer has declined significantly over time, as the benefit has not been adjusted to inflation, and the current amount is not enough to provide income support.

Furthermore, it is not a disability-specific scheme, as recipients with and without disabilities receive the same amount. Older Ugandans with disabilities are therefore not able to receive financial support to help them cover the additional costs of disability.

Currently, the two main income-support programmes for persons with disabilities are:


Tax- financed

Social Insurance

CHILDREN WORKING AGE

OLD AGE

●Childdisabilitybenefit

●Incomereplacementscheme

●Incomereplacementdisabilitypension

●Employmentinjurycompensation

●Oldagepension

●Oldagepension

●Disabilitybenefitstipend

●Care/supportbenefit

●Personalindependencepayment(additionalcosts)

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Women walk to collect their

Senior Citizens Grant. Karamoja,

Uganda

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Key Recommendations 10

PersonswithdisabilitiesinUgandaarebeingleftbehind,butitdoesnothavetobethisway.Exclusionfromsocietyisresultof

thebarriersthattheyface,nottheirimpairment,andiftheirvulnerabilitiesareaddressedacrossthelifecycle,manypersonswithdisabilitieswillbeablenotonlytosurvive,buttothrive.Investinginpersonswithdisabilitiesisameansofinvestinginthecountry,forthey,andtheircaregivers,canbegreatresourcesforthecountry,ifonlytheyaregiventheopportunitiesandmeanstolivetheirfullestlives.Bysupportingpersonswithdisabilities,bygivingchildrenthebeststarttolife,byreducingthetimeandresourcesthattheirhouseholdsmustspendonthem,personswithdisabilities

willbemoreempoweredandmorevisiblewithinsociety,andthiswillalsoleadtoadecreaseinthestigmaanddiscriminationthattheyface.

Stateinterventionisthereforeessential,butitmustbedignified,sustainableandnotadhoc.Currentfundingisminimalandmoremustbedonetoimplementasystemthatbothmainstreamsdisabilityacrossallsectorsandprogrammesandintroducestargetedinterventions.Thefollowingaresomekeyrecommendationsthatwillhaveatransformativeeffectforpersonswithdisabilities.However,thesearejustasnapshotofwhatshouldbedone,andfurthersupport–thatcutsacrossarangeofpublicservices–mustbefurtherimplementedifthereistobesystemicchange.

STRENGTHEN THE EXISTING SOCIAL PROTECTION SYSTEM ● Introduce a Child Disability Benefit

This should be a universal benefit that helps families to address the extra costs of caring for a child with a disability, which can be considerable.

● Introduce a disability benefit for working age adults This should provide income support to the small number of persons with disabilities who cannot work and compensate those who can work for the additional costs they experience.

● Extend the age of eligibility of the Senior Citizens Grant to those aged 65 and above This would provide effective coverage for all older persons with disabilities, although it would not cover the additional costs that they experience.

● Introduce a care/support benefit This would compensate for the loss of income that family members experience if they must give up work – either partially or completely – to provide care for a person with a disability with significant support needs.

ESTABLISH A NATIONAL DISABILITY REGISTRATION PROCESS This will be necessary to identify persons with disabilities and connect them to services and benefits. Assessment should be based on functionality and social exclusion indicators and should be updated regularly to take into account changes across the lifecycle.

INVEST IN PROFESSIONALISING AND OVERSEEING A NATIONAL SOCIAL WORK SYSTEMSupport coordination and case management. Linked to this, vulnerable and at-risk individuals and families need to be more proactively sought out and supported. Social

workers should have dedicated cases, so that they can build up trust with individuals and families and help to bolster their resilience.

STRENGTHEN THE GENDER FOCUS IN DISABILITY INCLUSION Given the findings that gender is a huge predictor in exclusion, it is imperative that existing gender-focused initiatives, such as the Gender and Equity Inclusive Budget Indicators, proactively include women and girls with disabilities, with specific targets and indicators to demonstrate this inclusion.

IMPROVE ACCESS TO MAINSTREAM PROGRAMMESStrengthen existing policies and legislation which advocate for affirmative action, for example those aimed at women and youth.

TRAIN GOVERNMENT STAFF ON DISABILITY INCLUSION Disability mainstreaming should be a core component of pre-service training for government staff, as well as part of continuous personal development. This could be undertaken in collaboration with the National Council for Persons with Disabilities and/or the National Union for Persons with Disabilities in Uganda and would facilitate earlier identification and assessment of adults and children with disabilities.

INCREASE ACCESS TO RESOURCES TO FACILITATE INCLUSION Assistive devices should be provided through existing health care structures, with proper assessment and fitting. Other resources, such as classroom assistants and sign language interpreters, should also be made more available. Additional budgets need to be made available for these resources.


A Ugandan man enjoying fried cassava.

Lugazi, Uganda.

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Thisreportisasummaryofthelongerreport:MinistryofGender,LabourandSocialDevelopment(2020)SituationalAnalysisofPersonswithDisabilitiesinUganda.MGLSD.Kampala

AUTHORSMaria KettandSarina Kidd

DevelopmentPathways.http://www.developmentpathways.co.uk

GRAPHIC DESIGNSarah RedmanMauveStudios

www.mauvestudios.com

SOURCESBanks,L.M.andPolack,S.(2014).TheEconomicCostsofExclusionandGainsofInclusionofPeoplewithDisabilities–EvidencefromLowandMiddleIncomeCountries.CBMandLondonSchoolofHygieneand

TropicalMedicine.London

AlJu’beh,K.(2017)AccountabilityInclusiveDevelopmentToolkit.CBM.Germany.

UgandaNationalDemographicandHealthSurvey2016

Copyright © Ministry of Gender, Labour and Social Development

Simbamanyo House, Plot 2 George StreetP.O. Box 7136 Kampala - Uganda.

Tel: (+256) (0) 414 347854/5 Fax: (+256) (0) 414 256374 / 257869Email: [email protected] Website: http://www.mglsd.go.ug

Implemented by

Documents

HARNESSING THEIR POTENTIAL · FOR GOD AND MY COUNTRY Above: Young Deaf children attending school. Photo taken for the Advocacy project. Gulu, Uganda JAMES EBITU FOR PERMANENT SECRETARY