Disability in Indonesia: What Can We Learn from the Data?

Australia Indonesia Partnership MONASH BUSINESS for Economic Governance SCHOOL

Disability in Indonesia: What can we learn from the data?

August 2017 The Australia Indonesia Partnership for Economic Governance is a facility to strengthen the evidence-base for economic policy in support of the Indonesian government. The work is funded by the Australian government as part of its commitment to Indonesia’s growth and development.

The report authors are Lisa Cameron and Diana Contreras Suarez. The authors developed this research while they were at Monash University as part of the Department of Econometrics and Business Statistics and the Centre for Development Economics and Sustainability. Currently they are based at the University of Melbourne and can be contacted at: [email protected], [email protected]

The authors are grateful for the comments and suggestions made by Dr Liem Nguyen from the Nossal Institute for Global Health and also CBM Australia. Also, for the excellent research assistance from Sarah Meehan. Any inferences or conclusions remain those of the authors.

Cover photo: Bapak Triyono, famous for establishing the first disabled-friendly ojek (motorcycle taxi) in Indonesia. Photo credit: Bapak Triyono - Difa Bike Disability in Indonesia: What can we learn from the data?

Executive Summary

Disability is an issue that touches many lives in Indonesia. There are at least 10 million people with some form of disability. This represents 4.3% of the population, based on the latest census which almost certainly understates its prevalence. More than 8 million households, or 13.3 percent of the total, include at least one person with a disability.

Disability affects not only people with a disability themselves but also their families. Households with a person with a disability have a lower monthly expenditure per capita, with female headed households being particularly vulnerable.

Most common disabilities arise from difficulties with vision, hearing and walking. Forty percent of those who have a disability have multiple disabilities.

Diseases and accidents cause the vast majority of disabilities (76%), compared with 17% caused by congenital factors. This means that many disabilities are preventable and there is scope for policy to improve outcomes.

People with disabilities in Indonesia have lower educational attainment, worse health, fewer economic opportunities and lesser access to public services than people without disabilities.

The average years of education of a person without a disability is 6.5 years. However, for someone with a moderate disability it is 4.4 years, and for someone with a severe disability it is on average only 2.8 years.

The majority of people with disabilities in Indonesia do not use assistive devices (e.g. hearing aids, walking aids, etc). For people with limited vision, 80% of those who report that they need glasses also say that they do not have them, and 28% of those who say they need a white cane do not have one.

For those with hearing impairments who say that they need a hearing aid, 91% do not have one. Given that hearing is one of the most prevalent conditions (12% of people with a disability), improving access to and use of hearing aids has the potential to considerably improve the daily functioning of many people living with a disability.

Access to prosthetics is also very low in Indonesia. For people with a difficulty using their arms, fingers, legs or with a physical deformity who need prosthetics, on average across these categories of disability less than 25% of people who could benefit from having a prosthetic are able to access one.

Policy has been hampered by a paucity of information about the specific barriers facing people with disabilities and how best to address them. There is, therefore, an urgent need for improved data and analysis.

i Disability in Indonesia: What can we learn from the data?

This report covers the prevalence of disability; disability and education, health, labour market activity and access to services; future directions and policy options. It is intended as a resource for Indonesian policy-makers in developing measures specifically tailored to meet the needs of people with disabilities in the environments in which they live to improve access to education and employment.

Recommendations include:

• Promote inclusion of people with disabilities in the civil service, where they are currently under-represented, partly owing to regulations that make it difficult to hire them. • Improve access to assistive devices and support their use with training. Efforts aimed at those with vision, hearing and walking difficulties will have the largest impact given that these disabilities are the most prevalent. • Improve economic opportunities for people with disabilities by making transport and other infrastructure more accessible, in particular for those whose mobility is hindered, and adopting new technologies that can assist people with disabilities to work. • Social protection that targets households with a disabled member to reduce the risk of families caring for dependents with a disability from falling into poverty. • Improved health services and working conditions to prevent many disabilities occurring in the first place. Most of the disabilities reported in Indonesia are non-congenital and instead acquired or developed as a result of diseases and accidents.

ii Disability in Indonesia: What can we learn from the data?

iii Disability in Indonesia: What can we learn from the data?

This document seeks to use Indonesia’s

the entire nation’s population and allows representative

Development for All

Disability in Indonesia: What can we learn from the data?

ata sources and ethodolo This report uses a numer o dierent datasets that provide inormation on disailit in Indonesia ere we descrie their eneral eatures and eplain how the measure disailit easurin disailit is comple In the nited ations tatistical ommission estalished the ashinton roup on isailit tatistics to promote international cooperation in disailit measurement to allow comparailit across countries itra et al I The developed a short uestionnaire which is desined or use in censuses and other lare data collection eorts ue to the compleit o disailit measurement the short set uestions are not desined to measure all aspects o diicult in unctionin that people ma eperience ut rather those domains o unctionin that are likel to identi the maorit o people at risk o participation restrictions The unctionin diiculties included are

• iicult seein even i wearin lasses • iicult hearin even i usin a hearin aid • iicult walkin or climin steps • iicult rememerin or concentratin • iicult with selcare such us washin all over or dressin • iicult communicatin usin our usual lanuae or eample understandin or ein understood

espondents are asked to indicate whether in each domain they have “no difficulty” “some diicult”; “a lot of difficulty” or “cannot do at all”. These domains are then ualiied as eneratin no limitation moderate or severe limitation

s the was estalished to homoenie the measurement o disailit in dierent surves in Indonesia have raduall adusted the wa the collect inormation in this area owever the surves all dier in terms o the uestions the include which are desined to measure disailit This is true even across ears within the same surve ome surves take a more medical approach attemptin to identi suerers o particular medical conditions associated with disailit e lindness deaness rain damae ome surves use oth the approach and the medical model Tale in the appendi provides details on the speciic uestions rom each o the surves used in this report The dierences in methodolo mean that the prevalence estimates rom each o the datasets are not directl comparale to each other and also not comparale across time opulation ensus The opulation ensus aims to provide inormation on all households in Indonesia in This surve ollows the short set methodolo ecept that it comines the rememerinconcentratin and the communicatin domains which are separate in the short set uestions The allowed responses aout the level o diicult also dier slihtl rom the recommendation espondents indicate or each unctionin domain whether the have no diicult a little sedikit diicult or severe parah diicult usenas The Indonesian ational ocial and conomic urve usenas is a nationall representative household surve which collects inormation on household

Disability in Indonesia: What can we learn from the data? characteritic and cooition education health ain activitie and fertility for ever arried oen. he uetionnaire conit of core uetion hich are aed every year and a odule. he odule a ecialied uetion on articular toic and rotate in and out of the urvey every three year. uetion on diaility are included in the “Social, culture and education” odule that a ileented in and .

he and urvey round eaure diaility uin the edical odel definition. hey a hether the eron i lind deaf du etc. ith the reone ein “yes” or “no". t ha een reconied that thi eaure eclude eole ith ild health iairent that iht find it difficult to function in the counity and o roduce a loer ound of the incidence of diaility. uena alo ue the edical odel of diaility ut include a different array of decrition of edical condition. or eale it a hether the reondent ha viion difficultie rather than hether he i lind ee ale in the aendi for detail. t alo collect an additional et of uetion on functionin ut hich differ fro the uetion. lloed reone to the uetion of hether uch difficultie are eerienced are “Yes” or “No”. Finally, Susenas 2012 follo the ore cloely. t a uetion aout the functionin doain ut the reone cateorie differ fro that recoended y the . lloed reone are “No”, “Modest” and “Severe” coared to the cateorie of ooe lotannot do at all.

lthouh the uena collect inforation on diaility in five urvey round. he chane in the uetionnaire ae it unuitale for eainin trend acro tie. lthouh the urvey uetion on diaility are the ae in and the edical definition ued in thee year enerate very lo etiate of diaility revalence le than of the oulation and o i alo unuitale. aerna he ational aour orce urvey aerna i a nationide urvey that collect inforation on the laour aret characteritic of all orin ae individual aed and over. hi urvey i conducted annually and i redoinantly ued to contruct laour aret tatitic. he aerna included oe uetion deined to identify diaility. t ue a coination of the edical definition and functionin difficultie. lloed reone ere o difficulty oe difficulty or evere difficulty.

Disability in Indonesia: What can we learn from the data?

FS e ndonesia Faily ie Survey FS is a ultitoic lonitudinal survey tat started in 1 and as een olloin te sae eole or ore tan 20 years. e sale is reresentative o o te ndonesian oulation livin in 1 o te 2 rovinces in te country ostly in estern ndonesia. For tis analysis e use te latest round ic as conducted in 201. is is a ric source o inoration and ass individuals aed 1 and older aout teir ealt and ysical conditions. t allos identiication o disaled individuals usin a edical deinition o disaility. nlie te oter surveys, it ass i a ealt ractitioner doctor, nurse, idie, etc. as dianosed eac condition it te alloed resonses ein “yes” or “no”.

e survey also includes a section on diiculties it ysical unctionin alin, suattin, carryin, standin, reacin, daily livin dressin, atin, ettin u, eatin, toiletin and activities o daily livin soin, cooin, cores, anain oney, edicines. e do not include tese in tis analysis as altou tey ollo te sirit o te tey are very dierent ro te oter surveys and so diicult to coare.

n addition to analysin te data sets entioned aove, tis reort also dras on te results o a literature revie o disaility and its iact on education, eloyent and te ouseold, uttin ndonesia in an international ersective see nneure and discussion it civil society oranisations and various oter staeolders in te area o disaility.

isaility revalence e start it an eaination o te dierences in revalence rates across dierent data sources. ra 1 resents te roortion o eole tat eac survey identiies as disaled. n 2000, 200 and 200 Susenas used a edical odel deinition ere tey ased eole i tey ere lind, dea, du, or ad a learnin or ysical disaility. sin tis aroac to disaility e calculate tat around 0. o te oulation as one o tose conditions. is easure, oever, does not include eole o ave oter diiculties and does not eclude eole o ave a diiculty ut it an assistive device can unction itin te counity as suested y te asinton rou. Susenas 200 and 2012, te ensus 2010, te ndonesian Faily ie Survey FS 201 and Saernas 201 use a deinition ore in line it te . Fro tese surveys e calculate tat te roortion o te oulation it a unctional disaility is eteen 2. and . e loo at te ensus, te revalence rate is ., or 10,10,1 eole it a disaility, ere disaility is deined as avin a little or severe diiculty in one or ore o te unctionin doains.

e edical dianostic enerates a loer ound o te disaility revalence as it does not include eole o ave not een dianosed or eale i tey do not ave edical access. e i revalence o disaility ound in te FS and te Saernas data ay relect tat tese data only cover individuals aed 1 and over.

Disability in Indonesia: What can we learn from the data?

Graph 1: Prevalence of Disability in Different Surveys .

. .

. . . . sens sens sens sens enss sens ILFS† Sakernas† os ons. sn se es n sens n ens. eesens surveys that used the medical definition of disability. † The sample does not include en ne e .

n esen o eoe n sy e se oss nones. oono n o es e e es eene n e ony oe n e ne eseene ones e en es o es n s s en es o . sny es n e o eene eo e oe ones s s n oy ee oe soe enonen o e eee o no e y o es. n e en e esen e eene o n n nones. sy s onene sy oe n es . oe .. s s onssen e nns n oeoo e o nones n e ns sy s e n es n os o e een eeon ones ey sy.

e e oeon o . eeen e eene e enee y e enss n e sens nn s en. e ones e e es ooon o eoe ses n s es e o n o es oono es n sn.

Disability in Indonesia: What can we learn from the data?

Map 1: Prevalence of people with a disability by province

Aceh

North Sumatra North Sulawesi Riau Island East Kalimantan

Riau West Kalimantan Gorontalo West Papua Central Sulawesi North Maluku West Sumatra Central Kalimantan Jambi West Sulawesi Bangka Belitung

South Sumatra South Kalimantan

Bengkulu Papua

South Sulawesi Lampung Jakarta Maluku Sulawesi Tenggara

West Java Banten Central Java

Percentage of People with Disability East Java Bali West Nusa Tenggara Yogyakarta (6.00,8.00] (2) (5.00,6.00] (4) (4.50,5.00] (6) East Nusa Tenggara (4.00,4.50] (14) (3.00,4.00] (4) [1.00,3.00] (3)

Source: Census 2010, authors’ calculations ap shos the provinces that have hiher percentaes of the population livin ith a disability. ap presents the distribution of the number of people affected hich provides some indication of the provinces here more resources in absolute terms may be reuired to support people ith disabilities. The map shos that the reatest number of people livin ith a disability are concentrated in ava orth Sumatra and South Sulaesi. The eastern part of the country has the loest number of people ith a disability. e find that in relative and absolute terms apua and est apua have the loest incidence of disability. dioetomo et al similarly find that disability prevalence is relatively lo in these to provinces based on analysis of the iskesdas data.

Map 2: Number of people with disability by province

Aceh

North Sumatra North Sulawesi Riau Island East Kalimantan

Riau West Kalimantan Gorontalo West Papua Central Sulawesi North Maluku West Sumatra Central Kalimantan Jambi West Sulawesi Bangka Belitung

South Sumatra South Kalimantan

Bengkulu Papua

South Sulawesi Lampung Jakarta Maluku Sulawesi Tenggara

West Java Banten Central Java

Number of People with Disability East Java Bali West Nusa Tenggara Yogyakarta (406765,1819652] (5) (235493,406765] (6) (158017,235493] (5) East Nusa Tenggara (120255,158017] (6) (54579,120255] (5) [18368,54579] (6) Source: Census 2010, authors’ calculations

Disability in Indonesia: What can we learn from the data?

Graph 2: Types of Disability as a Share of Total Disabilities

0 ,,0 0 0 0 ,0,0 ,21, ,0,10 ,0,2 0 02 01 0 Seein earin alin eeerin Selcare

Source: Census 2010 uthors calculations otal artial

rah 2 shos ho the nuer o eole ith a isailit are istriute across the ierent unctionin oains ision iiculties are consistentl the ost realent liitin asect across ierent sures oeer, seere iiculties are relatiel eenl istriute across the tes o iiculties t is coon that eole eerience ore than one te o isailit ort ercent o eole ith a isailit hae ore than one te o liitation hile the short set o uestions theseles elicitl aress onl liitations in unertain asic actiities, the are esine or analsis ith other inoration in a a that incororates the ull ioschosocial oel o isailit rinin toether the eical oel einition o isailit an the oains o liitin unction one can eaine interaction eteen the hsical eical conition the erson has an the liitation he or she aces Susenas 200 roies inoration on oth eical conitions an liitations in unctionin ale 1 resents the ercentae that each health conition contriutes to each oain o liitation he health conitions that liit the ail unctionin o eole the ost are ision iiculties, hearin iiculties an iairents in the use o les itone ercent o eole ho hae liitations in their ailit to care or theseles hae an iairent in usin their les, ars or iners or a ision role Sitour ercent o eole ho hae iiculties counicatin an interactin ith others hae ision, hearin an seain roles eole ho hae an iairent usin their les, a ision or a hearin role constitute 1 o the eole ho hae a hsical oilit iicult ence, in the asence o inoration on unctionin, olicies that taret eole ith these hsical iiculties are liel to roie the reatest eneits in ters o iroe unctionin an articiation in societ

n the Census 2010 the cateories reeerinconcentratin an counicatin ere coine See htt:ashintonrouisailitcoashintonrouuestionsetsshortset oisailituestions

Disability in Indonesia: What can we learn from the data?

Table 1: Interaction between health and limiting conditions

Limiting condition

Self- Comm. Physical Sight Total care and SA mobility

ision 1 1 1 2

earin 10 1 12 1 1

Seain 1

sin ars an iner 1

sin les alin 2 10 10 1

hsical eorit 2 1

aralsis 12 2

Chronic iseases 11

iles 1 1 0 0 0

earnin an unerstanin 1 2 0 0 1

ental iairent 2 1 0 2

ental isorer 0 0 1

otal 100 100 100 100 100 ealth iairent

Source: Susenas 200 uthors calculations sin sale eihts

SelCare: Selcare such as eatin, athin, an oin to the toilet

Co an S: Counication an social actiities such as seain, unerstanin conersation, etc

hsical oilit: hsical oilit such as ain u ro slee, oin aroun, lon istance al

Siht: Seein such as oseration or looin at an oect ithin 0 c

Disability in Indonesia: What can we learn from the data?

Causes o isailit he Susenas sures in their arious ersions enuire aout the cause o isailit noin the cause o isailit hels to eterine hat isailities it a e ossile to reent or eale, a conenital conition is less liel to e reente hile a isailit that is a results o an accient or isease coul e iinishe or aoie rah shos that 0 o isailities are cause iseases an 1 are cause an accient alnutrition is onl reorte as ein the cause o isailit 1 o the tie his a relect that alnourishent oten leas to other iseases hich a e reorte as the cause o the isailit Conenital isorers account or 1 o isailities

Graph 3: Cause of the disability

Malnutrition Stress congenital

Accidents

Diseases

Source: Susenas 2012 uthors calculations sin sale eihts

he 2012 Susenas ass aout accients an natural isasters he 200 Susenas ase aout natural isasters an accients searatel an shos that the contriution o natural isasters to isailit is sall 2

Disability in Indonesia: What can we learn from the data?

Table 2: Type of disability by cause

Conge- Mal- Accidents Diseases Stress Total N nital nutrition

iicult seein, een i earin 10 12 0 100 01 lasses

iicult hearin, een i usin a 1 1 1 0 100 10 hearin ai

iicult counicatin 0 22 1 0 100 1012 seech iaire

iicult reeerin or 1 20 0 2 100 110 concentratin

iicult alin or 1 2 0 1 0 100 200 cliin stes

iicult ith sel care eatin, 1 2 1 100 1 athin, ressin, toilet

Source: Susenas 2012 uthors calculations sin sale eihts

ale 2 shos the reorte causes isailit te ision iiculties are oten cause iseases an accients in o cases ortant oints to hihliht are that counication iiculties are oten relate to conenital causes 0 hile iiculties reeerin or concentratin are oten the result o an accient or stress 2 iseases an accients also oten cause alin iiculties 0 an 2 resectiel coare ith 1 o alin iiculties hich are a result o conenital conitions

rah resents the ae istriution o the total oulation in nonesia an the roortion that has a isailit nonesia is a oun countr, ith 2 o the oulation ae eteen 0 an 1, an 2 eteen 1 an 2 n these ae rous onl 1 an 1 are aecte a isailit n contrast, hile eole oler than 0 are onl o the oulation, 2 o the are aecte a isailit, inicatin that ost isailit is concentrate aon the elerl

Disability in Indonesia: What can we learn from the data?

Graph 4: Disability Prevalence within age categories 0 2 20 1 10 0 01 12 0 0

oulation oulation ith artial isailit oulation ith total isailit

Source: Census 2010 uthors Calculations rah resents the ae istriution o eole ith a isailit s entione aoe the aorit o eole ith a isailit are elerl he are aroun hal o the oulation hen e eaine the tes o iiculties the ace, e in that the ost coon liitation is hain a ision role o the elerl reort ision iiculties een hen usin lasses urther reort hearin roles an hae iiculties alin an cliin stairs

Graph 5: Age distribution of people with a disability

1,,0, 1 01

2,0, 12 0

,,0, 1,0,, 11

2,12,2, 2

Source: Census 2010 uthors Calculations

inall, across the ierent sures e in that isailit realence oes not ar arel ener Census ata shos that the incience o isailit is siilar or ales an eales o oen hae a isailit coare ith o en o eole ith isailities are oen iures ro the Susenas ier slihtl, inicatin that o the isale are oen in 200 an 0 in 200

Disability in Indonesia: What can we learn from the data?

ssistie eices ale shos the roortion o eole ho inicate that the o not hae an assistie eice hich the reort neein his is reorte te o health iairent an te o eice that the iniiual reorts that the nee or eole ith liite ision, 0 o those ho reort that the nee lasses also reort that the o not hae the, an 2 o those ho reort the nee a hite cane o not hae one his coul e relate to liite access to the cane itsel ut also to lac o access to aroriate trainin on ho to use it or those ith hearin iairents ho reort that the nee a hearin ai, 1 o not hae one ien that hearin is one o the ost realent conitions 12 o , iroin access to an use o hearin ais has the otential to consieral iroe the ail unctionin o an eole liin ith a isailit ccess to rosthetics is also er lo in nonesia or eole ith a iicult usin their ars, iners, les, or ith a hsical eorit ho nee rosthetics, on aerae across these cateories o isailit less than 2 o eole ho coul eneit ro hain a rosthetic are ale to access one

Table 3: Unmet demand for assistive devices

Assistive device % unmet Health Impairment needed need

lasses 0 ision lin stic 2

earin earin i 1

Seain Sin lanuae

sin ars an iner rosthetic 0

rosthetic

sin les alin heelchair 2

alin ai 2

rosthetic 0

hsical eorit heelchair 2

alin ai

heelchair 11 aralsis alin ai

Chronic iseases reathin ai 1

Source: Susenas 200 uthors calculations sin sale eihts

Disability in Indonesia: What can we learn from the data?

isailit an ucation, ealth, aour aret ctiit an ccess to Serices

Table 4: People with disability - access to education, health and the labour market

PwD PwD severe moderate Pw/oD Diff Diff (1) (2) (3) (1-3) (2-3)

ears o eucation1 2 2

ttenin school o ae to 1 2 2 1

ttenin school o ae to 122 2 1

ttenin school o ae 1 to 12 2 2

ttenin school o ae 1 to 22 1 1 1 2

n health role last onth2 20 2

articiatin in the laour orce 2 1

articiatin in the laour orce iicult

iicult seein, een i 1 1 earin lasses

iicult hearin, een i usin 2 2 12 a hearin ai

iicult alin or cliin 1 21 stes

iicult reeerin or concentratin or hae iicult counicatin ith others 1 1 2 ecause o a hsical or ental conition

iicult ith selcare eatin, 10 1 athin, ressin, toilet

Source: Census 2010 uthors calculations

otes: 1 ter controllin or ae 2 Source Susenas 2012 usin iniiual eihts

Disability in Indonesia: What can we learn from the data?

eriencin a isailit is liel to restrict access to ulic serices n this section e loo at soe areas here eole ith a isailit are liel to e isaantae ale shos the ierence eteen eole ith an ithout o a isailit in eucational attenance an attainent, health status, an articiation in the laour aret ucational attainent is loer aon eole ith a isailit he aerae eucation o a erson ithout a isailit is ears, hoeer or a erson ith a oerate isailit it is ears, an or soeone ith a seere isailit it is onl 2 ears on aerae10 hese ierences coul e ecause ailies ecie not to sen chilren ith a isailit to school as the are iee as ein unliel to eer or or earn a reasonale liin, anor a lac o access to eucation or chilren ith a isailit ro ailies ho o ant to sen their chilren to school11 ith the aailale ata it is not ossile to ienti the ain causes

e loo at school attenance, there is a 1 ercentae oint t ierence in school attenance eteen schoolae chilren ith a oerate isailit an those ithout a isailit 2 ersus here is an aitional 0 t ierence eteen chilren ith a oerate isailit an chilren ith a seere isailit, ith onl 2 o schoolae chilren ith a seere isailit attenin school t is thus liel that access to the laour aret in the uture ill e seerel liite

e loo at school articiation school leel, e in that the a in school attenance eteen chilren ith a isailit is larer or chilren o seconar school ae than or riarschoolae chilren his is articularl true or those ith a oerate isailit nl o chilren ae to 12 ith a oerate isailit are attenin school ersus o those ithout a isailit hereas or chilren ae 1 to 1 attenance ecrease to onl or those ith a oerate isailit ttenance is ore or less aintaine at or chilren ithout a isailit roression throuh school raes is also aecte isailit n searate calculations e in that 22 o chilren ith a oerate or seere isailit ho are ae eteen 1 an 1 are still in riar school, coare ith onl o chilren ithout a isailit in this ae rane he cause o this lac o roression is unclear ien the eistin ata

Schoolin can e also hinere the resence o ultile iiculties ale 2 in the aeni shos a siilar analsis o school attenance an coares chilren ith ultile an sinle isailities ain ultile isailities is as restrictie as hain a seere isailit, ith onl o chilren ith ultile isailities attenin school Schools are oten not euie, nor reare, to enrol chilren ith a isailit his is een ore so hen chilren hae ultile isailities

10 Susenas 2012 ass resonents to inicate hether the hae iiculties in the arious unctionin oains he aailale resonses are es, oerate rinan es, seere erat or o n the 2010 Census resonents hen ase hether the hae a articular iicult are ale to reson o little seiit or seere arah 11 hese are iel acnolee as coon occurrences isailit aocates in nonesia Source: conersations ith isailit CSs an other ractitioners

Disability in Indonesia: What can we learn from the data?

ain a irth certiicate is an oicial reuireent or school enrolent an or accessin other serices althouh 22 o chilren attenin school are reorte to not hae a irth certiicate nl 0 o chilren ith a isailit hae a irth certiicate coare to o chilren ithout isailities at the sae ae, Susenas 2012 iicult otainin irth certiicates a e a arrier to eucation or chilren ith isailities n their ailit to access other ulic serices12

ealth is also oorer aon eole ith a isailit roun 0 o reort health roles, hich is 0 ts ore than eole ithout a isailit 1 hiher realence o health roles inicates that are liel to ace hiher health riss anor lesser access to health serices aroriate or their nees

articiation in the laour aret is also siniicantl loer or eole ith isailities1 he oerall sall ierence eteen eole ith oerate isailities an eole ith no isailities 1 ersus is ainl rien those ith oerate ision iiculties e eclue this rou, e in that onl o are articiatin in the laour aret coare ith o eole ithout a isailit iiculties ith selcare iose the reatest restrictions, hile hearin iiculties are the least restrictie here are ore or oortunities an or enironents that are rienl toars eole ho hae a hearin iairent en eole ho hae a seere hearin isailit articiate in the laour aret ore than other rous ith a seere iicult his inicates that it is ossile to create econoic oortunities or throuh the use o aroriate technolo an the illinness o eloers to aat an accooate the nees o eole ith isailities

he restrictions associate ith hain a isailit a ier ener ale in the aeni resents eucational attainent an laour orce articiation ener or eole ith an ithout isailities oen ith a isailit otain on aerae 2 ears o eucation ersus 1 ears or en he ierence in eucational attainent eteen eole ith an ithout a isailit is hoeer siilar across the eners aroiatel ears less eucation he ierence in school attenance rates eteen en ae oer 12 ith an ithout a isailit is reater than that or oen, suestin that isailit a e associate ith reater eucational isaantae in ters o roceein eon riar school or en isailit is also associate ith a reater ecrease in the roailit o orin or en than or oen an 11 ercentae oint ecrease or en an an ercentae oint ecrease or oen, althouh 2 o en ith a isailit or relatie to 1 o oen

12 urther exploration of the data show that “being too expensive” is the main reason for not hain a irth certiicate or oth chilren ith an ithout a isailit oeer, the second most common reason for children with disabilities is that they “do not see the need for it” (18%, coare to or chilren ithout a isailit t a e that arents o chilren ith a isailit o not no aout the serices that are roie the national oernent an that the are entitle to access 1 he health roles inclue are: eer, couh, col, asthareathlessness, iarrhoea, iraine, toothache, or other 1 or this analsis e restrict the sale to those o orin ae 1 to ears

Disability in Indonesia: What can we learn from the data?

Table 5: People with disability – Labour Market Conditions

A: Industry of employment C: Employment Institution severe moderate wo severe moderate wo griculture 8% % % overnment % % 8% ining uarrying 1% 1% 1% nternational institution % % % anufacturing 8% % 1% onprofit nstitution 1% 1% 1% lectricity gas water % % % rofit nstitutions % % 1% onstruction % % % ooperatives % % % holesale retail hotel % 1% % ndivhousehold business % 1% % ransport communication % % % ousehold 1% 1% 1% inanceinsur real estate 1% % % ther % % % ommunity psnl services 1% 1% 1% o not now % % % otal 1% 1% 1% otal 1% 1% 1% B: Occupation of employment D: Status of employment severe moderate wo severe moderate wo ilitary % % 1% wn account % % 1% anager 1% 1% 1% mployer assisted by unpaid w % % 1% rofessional % % % mployer assisted by paid w % % % echnical and assoc prof % % % aid woreremployee 1% % % ffice lers % % % asual in agriculture % % % ervice and ales % % % asual not in agriculture % % % illed griculture % % % npaidfamily worers 1% 1% 1% raft and trades wor 1% 1% 1% otal 1% 1% 1% perators and assemblers 1% % % lementary occupation 18% 1% 1% otal 1% 1% 1% Source: Sakernas 2016. Authors’ calculations. Using sample weights.

Disability in Indonesia: What can we learn from the data?

e also eplore the tpes o work one w. he results are presente in ale . w are oerrepresente in agriculture. hile onl 0 o people without isailities work in agriculture o people with a seere isailit work in this inustr. Agriculture is the ominant inustr o emploment or w in part ecause there is a higher prealence o w in rural areas. he secon most common inustr o emploment is the trae wholesale an retail an hotel sector where 20 o people with a seere isailit work ollowe communit an personal serices with 16. his istriution is also relecte in the occupation o emploment presente in panel . ortie percent o people with a seere isailit work in agricultural actiities 22 are in serices an sales an 1 in elementar occupations such as street oo enors shoe cleaners etc.. nl a er small proportion are in managerial proessional technical an clerical positions.

n panel we show that the maorit o w work in iniiual or househol usiness o people with a seere isailit compare with 62 o people without a isailit or are househol workers 16 c.. 10 or people without a isailit. nl o w work in orproit institutions 1 or people without a isailit an in the goernment compare to . w thus hae ewer opportunities an are more likel to e in more ulnerale os with less securit an worse conitions. here is consierale scope or the goernment to pla a leaership role in promoting inclusion an economic opportunities or w. inall panel shows the status o emploment. Seentie percent o w work in the inormal sector own account emploer assiste unpai workers casual workers an unpaiamil workers an most o them are either selemploe hae a usiness assiste nonpai casual emploees or are unpai amil workers.1

imite options or emploment can relect moilit restrictions. or eample a lin person who oes not hae a phsical moilit prolem can in his moilit restricte the limite access to transportation options or ootpaths. n ale 6 we look at the location o the o or usiness an in ale we look at access to inrastructure serices. hile onl 1 o people without a isailit work at home 2 o w o. n uran areas the proportion o people with isailities working at their homes is oule the proportion o people without a isailit. his likel relects limite ormal work opportunities an the nee to create work opportunities or themseles in a place that is easil phsicall accessile.

1 e isaggregate the analsis status o emploment ormalinormal an geograph ruraluran the results are in ales A to A in the appeni.

17 Disability in Indonesia: What can we learn from the data?

–

es at own home 2 2 1 22221 es at rienrelaties home 1 1 1 6 es at emploers home 6 11 12106 ther 6 6 0 6121 es at own home ural 22 20 16 6606 Uran 2 1 121 Source: Sakernas 2016. Authors’ calculations. Using sample weights

Access to serices o Access Use it Don’t use it Access to pulic transport 1 Access to inormation 1 Access to shopping centres 6 Access to siewalks 6 Access to peestrian rige 6 6 2 Access to crossing the roas 10 0

otal eical ucation 1 raining 0 social 0

one

Source: Susenas 2012. Authors calculations. Using sample weighs. 600661

18 Disability in Indonesia: What can we learn from the data?

ale presents some inormation on ostacles to accessing inrastructure an rehailitation serices people with a isailit. A isaggregation uranrural is presente in ale A in the appeni. he maorit o wD o not access serices. or eample o wD o not hae access to pulic transport an o not use it. So onl 1 use pulic transport. arriers in access to serices are likel to e the result o the acilities not eing isaleuser rienl. his is likel a actor restricting wD to work at home.

Similarl it seems that there is er low aailailit o rehailitation serices or wD. nl access meical rehailitation an onl 1 hae access to special eucation serices. his is an area with signiicant potential or improement at the local leel. ale shows that man people who woul eneit rom learning an using sign language an speech therap o not hae access to it. roiing eucation an training or people with ision hearing an speaking iiculties will increase their ailit to unction in their communities.

amilies o eople with Disailit aing a isailit aects the general welleing o the person who has the conition ut its impact also etens to his or her amil. ensus ata show that while . o the population ace a isailit 1. o househols hae a househol memer with a isailit. his is more than million househols that hae at least one person with a isailit. he isailit o a househol memer likel imposes a cost on the househol. or eample a higher share o epeniture on health an a reuction in the time the househol is ale to eote to economicall prouctie actiities as househol memers ma nee to eote time to the care o the person with a isailit.16 n this section we escrie some o the eects isailit has on other househol memers.

ale presents some ierences in terms o the eects on chilren the caregiers an the househol epenitures etween househols with a wD an househols without a wD.1 or the smallest chilren in the house we in that reasteeing is almost a uniersal practice with an 6 o the chilren age 0 to haing een eer reastee in wD an woD househols respectiel. n househols where there is a wD 2 o chilren age to are working. his represents approimatel 0000 chilren an oule the proportion o chilren in househols where there is not a person with a isailit.1

hilren ma e working to help supplement househol income to meet the increase costs associate with the presence o a memer with a isailit an to compensate or aults’ reuce ailit to work ecause o caring responsiilities. Another possile eplanation is that poert is relate to isailit. hat is poor househols are more likel to hae a memer with a isailit an chil laour is another epression o their poert. o ate it is not clear whether poert is a cause or a conseuence o isailit or oth an more research is reuire in this area. oweer it is likel that poert is a risk actor or noncongenital isailit. hronicall

16 Susenas 2006 shows that o wD nee help in their ail actiities at least occasionall. 1 ales A an A10 present the reak up uranrural. 1 his ierence is statisticall signiicant at the 1 leel.

19 Disability in Indonesia: What can we learn from the data?

’

20 Disability in Indonesia: What can we learn from the data?

’s

–

•

21 Disability in Indonesia: What can we learn from the data?

s s – s s s s ss s sss s s s s s s • s s s s s s ss s s ss sss s s s s s s s s s s s s ss ss s s s s s s ss • s s s ss s s s s ss ss s ss s s ss • s s s s sss s ss s s s s ss s s s s s ss s ss s s s s s ss s ss s ss ss • s s s s s t’s ability to employ PwD. Incentivising the s s s • s ss ss s s s s s s s s s s s s ss s s s s s s s s ss s ss ss s s ss ss s s ss s ss ss s s s ss

22 Disability in Indonesia: What can we learn from the data?

• ost o the isabilities epote ae noncongenital an instea ae acie o evelope as a eslt o iseases o accients. ome isabilities can ths be pevente by impove health sevice access an woing conitions stanas. o eample health sevice potocols col be pt in place to ientiy chilen an alts at is o aciing a isability. lso ealy iagnosis o lowlevel isabilities an ealy intevention can iminish the pobability o inceasing seveity. Implementing eglations that establish minimm woplace stanas will ece the is o woes aciing pemanent isabilities. inally in the event o accients all companies shol be mae to comply with the P employment accient insance. inal ecommenation elates to the nee o high ality ata on isability which elects the ecommenations in thei entiety an so is consistent acoss time. • . onsistency in ata collection acoss time is essential to the sty o pogess with ega to isability inclsiveness as lai ot in the PD pinciples. he ational ocioeconomic vey senas is a natal place in which to collect these ata as it allows an analysis o isability alongsie othe social an economic otcomes. Disability ata was last collecte in the senas in . he nee o highality ata on isability is especially pessing given the passing o aw o. . hogh this law the Inonesian govenment has committe to impoving the welae o Inonesians with isabilities an thei ability to paticipate in society. Data will allow pogess against goals in ey aeas to be mease sch as ecational attainment an labo oce paticipation by insty an secto. system o monitoing implementation o the law an associate eglations an evalating pogess ove time is vital to ensing that the intent o the law becomes a eality.

the eseach col itlly ocs on evalating the liely impacts o the appoaches sggeste above on the welae o people with a isability an thei amilies. eeence oce . ailey . ang . ani . . ett . . ate an sanitation isses o pesons with isabilities in lowan mileincome conties a liteate eview an iscssion o implications o global health an intenational evelopment. Journal of Water and Health 9 .

23 Disability in Indonesia: What can we learn from the data?

ppeni itional ables an iges

eical moel einition

ypes o isability

lin Dea Dmb Dea an Dmb

Physical isability eaning isability

Insane Physical an mental isability mltipl. the ain amage ision poblem eaing poblem

peech Impaiment tism

24 Disability in Indonesia: What can we learn from the data?

ype o Diiclty eeing eaing peaing

sing ams an inge sing legs waling climbing stais

Physical eomity

Paalysis honic iseases

pilepsy eaning an nestaning

ental etaation

ental Disoe aling an nestaningcommnicating with othes the e. emembeingconcentating behavioalemotional selcae etc.

Disability in Indonesia: What can we learn from the data?

o es es es ome tent o isability o o o llowing llowing llowing eiit llowe esponses only o only o only o eang meical meical es meical otal o Paah conitions conitions conitions nctioning Deinition

Diiclty in eeing an obect at a istance o cm

Physical activity sch as waing p om sleep moving aon long istance wal

elcae sch as eating bathing an going to the toilet ommnication an social activities sch as speaing nestaning convesation etc.

Diiclty seeing even i weaing glasses

Diiclty heaing even i sing a heaing ai Diiclty waling o climbing steps 26

Disability in Indonesia: What can we learn from the data?

Diiclty emembeing o an concentating commnicating Diiclty with selcae eating bathing essing toilet

Diiclty commnicating speech impaie o es o little tent o isability moest ingan seiit llowe esponses es evee es sevee paah

o beat the elate estions

eie help o aily activities Disability limits yo inteaction with the commnity

Disability in Indonesia: What can we learn from the data?

–

ttening school o age to

oce enss . thos calclations.

28 Disability in Indonesia: What can we learn from the data?

–

eas o ecation . . . . . .

ttening school o age to .

Paticipating in the labo oce .

oce enss . thos calclations. otes te contolling o age.

29 Disability in Indonesia: What can we learn from the data?

–

giclte ovenment ining aying Intenational instittion anacting onpoit Instittion lecticity gas wate Poit Instittions onstction oopeatives holesale etail hotel Iniv.hosehol bsiness anspot commnication osehol inanceins. eal estate the ommnity psnl. sevices Do not now otal otal PD PD PD PD high low PwoD high low PwoD ilitay wn accont anage mploye assiste by npai w. Poessional mploye assiste by pai w. echnical an assoc. po. Pai woeemployee ice les asal in agiclte evice an ales asal not in agiclte ille giclte npaiamily woes at an taes wo otal peatos an assembles lementay occpation otal Source: Sakernas 2016. Authors’ calculations. Using sample weights.

30 Disability in Indonesia: What can we learn from the data?

–

Agriculture 6 6 2 oernment ining uarring 2 1 1 nternational institution 0 0 0 anuacturing onproit nstitution 1 0 1 lectricit gas water 0 0 0 roit nstitutions 2 onstruction 6 ooperaties 0 0 0 holesale retail hotel 1 16 ni.househol usiness 0 ransport communication 1 2 ousehol 1 16 1 inanceinsur. real estate 0 0 1 ther 2 2 1 ommunit psnl. serices 1 11 o not know 0 0 0 otal 100 100 100 otal 100 100 100 ilitar 0 0 0 wn account 2 21 16 anager 0 1 1 mploer assiste unpai w. 6 2 roessional 2 mploer assiste pai w. 1 echnical an assoc. pro. 0 1 1 ai workeremploee 1 2 ice lerks 0 1 2 asual in agriculture 6 Serice an Sales 11 1 16 asual not in agriculture 6 Skille Agriculture 6 Unpaiamil workers 2 1 21 rat an traes work 10 otal 100 100 100 perators an assemlers 1 lementar occupation 1 12 16 otal 100 100 100

Source: Sakernas 2016. Authors’ calculations. Using sample weights. 31

Disability in Indonesia: What can we learn from the data? –

Agriculture 1 1 oernment 2 20 1 ining uarring 1 1 nternational institution 0 0 0 anuacturing 2 1 22 onproit nstitution 2 2 lectricit gas water 0 0 1 roit nstitutions 1 2 onstruction ooperaties 0 0 1 holesale retail hotel 6 1 1 ni.househol usiness ransport communication ousehol inanceinsur. real estate 6 6 ther 2 2 ommunit psnl. serices 2 o not know 0 1 0 otal 100 100 100 otal 100 100 100 ilitar 1 1 1 wn account 0 0 0 anager mploer assiste unpai w. 0 0 0 roessional 10 12 12 mploer assiste pai w. 12 1 echnical an assoc. pro. 1 6 ai workeremploee 6 2 ice lerks 2 10 12 asual in agriculture 0 0 0 Serice an Sales 1 16 1 asual not in agriculture 0 0 0 Skille Agriculture 11 10 Unpaiamil workers 0 0 0 rat an traes work 1 1 1 otal 100 100 100 perators an assemlers 11 lementar occupation 1 20 1 otal

Source: Sakernas 2016. Authors’ calculations. Using sample weights.

32 Disability in Indonesia: What can we learn from the data?

–

PWD PWD PWD PWD high low Pw/oD high low Pw/oD Agriculture oernment 0 0 0 ining uarring 1 1 1 nternational institution 0 0 0 anuacturing 6 onproit nstitution 0 0 0 lectricit gas water 0 0 0 roit nstitutions 0 1 1 onstruction 2 ooperaties 0 0 0 holesale retail hotel 22 2 2 ni.househol usiness 1 2 ransport communication 2 ousehol 1 1 1 inanceinsur. real estate 0 1 1 ther 2 2 1 ommunit psnl. serices 1 o not know 0 0 0 otal 100 100 100 otal 100 100 100 PWD PWD PWD PWD high low Pw/oD high low Pw/oD ilitar 0 0 0 wn account 1 2 anager 0 0 0 mploer assiste unpai w. 2 roessional 0 1 0 mploer assiste pai w. 0 0 0 echnical an assoc. pro. 0 0 0 ai workeremploee 0 0 0 ice lerks 0 0 0 asual in agriculture Serice an Sales 2 2 2 asual not in agriculture 11 Skille Agriculture 0 0 0 Unpaiamil workers 1 1 2 rat an traes work 11 otal 100 100 100 perators an assemlers 1 lementar occupation 16 1 1 otal 100 100 100

Source: Sakernas 2016. Authors’ calculations. Using sample weights. 33 Disability in Indonesia: What can we learn from the data?

–

Access to pulic transport 1

Access to inormation 1 0

Access to shopping centres

Access to siewalks 6 1

Access to peestrian rige 1 2

Access to crossing the roas

Access to pulic transport 6 1 0

Access to inormation 0 1 6

Access to shopping centres 0

Access to siewalks

Access to peestrian rige 61 2

Access to crossing the roas 12

w has participate in rehailitation serices last ear

Uran ural

eical

ucation 2 1

raining 1 0

social 1 0

one 2

Source: Susenas 2012. Authors calculations. Using sample weights.

Uran 2660 rural 2.

34 Disability in Indonesia: What can we learn from the data?

hilren

hilren 0 to eer reaste1 1. pp

hil laour age to 1 1 1 0.1 pp

roportion o chilren to 1 attening 1 2 pp school

roportion o silings to 1 who are 1 pp attening school

ain caregier

emale spouse participating in the laour 0 2 pp orce

emale hea participating in the laour 6 6 20 pp orce

ousehol

onthl total peniture per capita2 011 61

onthl total peniture per capita 0 616 160

Source: ensus 2010 unless state. Authors calculations. otes: 1 Using Susenas 200. 2 Using Susenas 2006 an a unctional isailit einition. Using susenas 200 an a meical isailit conition. onthl epeniture in current prices. All Susenas calculations inclue sample weights.

35 Disability in Indonesia: What can we learn from the data?

hilren

hilren 0 to eer reaste1 6 0. pp

hil laour age to 1 1 1. pp

roportion o chilren to 1 attening pp school

roportion o silings to 1 who are 0 pp attening school

ain caregier

emale spouse participating in the laour 60 2 pp orce

emale hea participating in the laour 1 2 pp orce

ousehol

onthl total peniture per capita2 2261 210 121

onthl total peniture per capita 100 602 6

36 Disability in Indonesia: What can we learn from the data?

Aceh

North Sumatra North Sulawesi Riau Island East Kalimantan

Riau West Kalimantan Gorontalo West Papua Central Sulawesi North Maluku West Sumatra Central Kalimantan Jambi West Sulawesi Bangka Belitung

South Sumatra South Kalimantan

Bengkulu Papua

South Sulawesi Lampung Jakarta Maluku Sulawesi Tenggara

West Java Banten Central Java

Percentage of People with Disability - Rural East Java Bali West Nusa Tenggara Yogyakarta (5.75,7.20] (5) (4.97,5.75] (6) (4.63,4.97] (5) East Nusa Tenggara (4.33,4.63] (6) (3.89,4.33] (5) [0.00,3.89] (6)

Source: Census 2010, authors’ calculations

37 Disability in Indonesia: What can we learn from the data?

Aceh

North Sumatra North Sulawesi Riau Island East Kalimantan

Riau West Kalimantan Gorontalo West Papua Central Sulawesi North Maluku West Sumatra Central Kalimantan Jambi West Sulawesi Bangka Belitung

South Sumatra South Kalimantan

Bengkulu Papua

South Sulawesi Lampung Jakarta Maluku Sulawesi Tenggara

West Java Banten Central Java

Percentage of People with Disability - Urban East Java Bali West Nusa Tenggara Yogyakarta (4.66,6.90] (5) (4.26,4.66] (6) (3.92,4.26] (5) East Nusa Tenggara (3.81,3.92] (6) (3.47,3.81] (5) [2.54,3.47] (6)

Source: Census 2010, authors’ calculations

Annexure: Disability - Indonesia in International Perspective

nneure: isailit nonesia in nternational ersectie

isailit an acts on ucation, loent the ousehol

1 ntrouction

“Largely overlooked in data collection and policy formulation, people with disabilities are often rendered socially invisible.” (International Labour raniation , 201, 1

or an o us, the concet o isailit is at once ailiar an unnon hile it is coon hen consierin isailit to thin o a oan in a heelchair or a an who is blind, it is less usual to recall that “[d]isability [also] encompasses the child born with a congenital condition such as cerebral palsy[,] … the youn solier ho loses his le to a lanmine, … the middleae oan ith seere arthritis, an the oler person with dementia, among many others” (World Health Organization (WHO) & orl an, 2011, n aition, the iersit o isailit etens ell eon the te o health iairent to actors incluin seerit, uration, ae, ae o onset, ener an incoe or isailities can e il or seere, teorar or eranent, an can aect all eole, hether the are oun or ol, en or oen, rich or oor Siniicantl, soe actors o aear to e ore coon than others or eale, isailit tens to e ore realent aon oen, the elerl an the oor ut each set o circustances ies rise to ierent nees an eeriences, hich are urther inluence the hsical an cultural enironent in hich a erson lies otal, aroun the orl, an in eeloin countries in articular, this ie ariation in the eeriences an challenes ace eole ith isailities an their ailies, an the olicies an roras that coul est suort the, are still oorl unerstoo, larel as a conseuence o a lac o reliale, coarale ata

n this reie, e consier the ata that is aailale an hat it reeals aout: i the nature o isailit statistics, incluin their liitations an coarailit ii the realence o isailit loall, an in eeloin countries in articular iii the relationshi eteen isailit an eucation, eloent, ol ae, oert an the roaer ail an i the state o isailit olic n oin so, e reoinantl ra on the inins o our e stuies, the scoes o hich are suarise in ale 1, an hereer ossile e assess an coare the nonesian eerience ith that in siilar countries in the reion Siniicantl, e ienti ie ariations an inconsistencies in the ata eertheless, there are soun reasons or eectin that enironental actors la an iortant role in elainin h eole ith isailities ten to hae loer rates o school attenance an eloent than their non isale eers here also sees to e a creile asis or eectin that a toa relationshi eists eteen isailit an oert, an that the iact o isailit etens eon isale eole to aect their roaer househols he act oler eole are ore liel to eerience isailit can also e eecte to ose an increasin challene in laces ith rail ain oulations, incluin nonesia

39 Annexure: Disability - Indonesia in International Perspective

(aizal, dioetomo, ont & Irwanto, ). Lastly, it appears that little is known about what works in the area of disability policy. ogether, these findings indicate there is much scope for further research, especially into the drivers of disabled people’s lack of access to education and employment, and the effectiveness of disability policies and programs. . efining and easuring isability

“Disability can occur at any time during life—from birth to old age. It can be caused by a multitude of factors from poor nutrition to violence to poor health care. It can be mild or severe, and it could potentially affect a wide range of functional areas mobility, vision, hearing, communication, psychosocial function limitations, etc.” (Adioetomo et al., 2014, p. )

round the world there are estimated to be one billion people with disabilities, of whom are thought to live in developing countries (ILO, ). ut what does this mean What is it to be a person with a disability he answer is more comple than it seems. or eample, does someone who is unable to walk have a disability What if their inability to walk is only temporary Or if they are unable to walk long distances, but short distances are okay Or, even if they cannot use their legs, they have a wheelchair so they are still able to get around oes that make a difference How about if, although they are very mobile in their wheelchair, they are unable to go down rough and potholed streets, or enter offices where the doorways are narrow or there are steps at the entrance

he traditional approach to thinking about disability reflected the medical model, which focussed on the health impairment (itra, osarac & ick, ). nder this approach, people were considered to have a disability if they had a health condition, such as being unable to see or hear or communicate, regardless of whether they were restricted in their life activities (itra et al., ). his means that a person who did not have the use of their legs would be considered disabled. However, over time it increasingly came to be recognised that a person’s environment has a significant influence on the etent to which their impairment affects their capacity to participate in community life. he idea that disability was a product of barriers in the social environment (rather than an individual’s characteristics) was captured in the social model of disability (itra et al., ), which reflected the view that although a person may be unable to walk, if their environment was accommodating (e.g. if they had a wheelchair or prosthetic limb, an accessible school or workplace, and a supportive community) their ability to carry out daytoday activities may not be severely restricted.

he most current thinking on disability integrates the medical and social models into a “biopsychosocial framework” called the International lassification of unctioning, isability and Health (I) (see igure ), which was developed by the WHO in (itra et al., ). his model reflects the notion that people are disabled by “the interaction between their health condition and the environment” (p. ii). In other words, it is a health impairment in conunction with an environment that poses barriers for a person with that health impairment that creates a disability the health impairment or the environment alone does not. In this approach, a person who must use a

40 Annexure: Disability - Indonesia in International Perspective wheelchair in a town in which many streets and buildings are not wheelchairfriendly and there is little public transport may have severe difficulty moving around and thus be considered to have a disability. owever, if that person lived in an area where the streets were smooth, buildings had wide doorways, ramps and elevators, and buses were wheelchairaccessible, they may only have mild difficulty moving around and no longer be classed as disabled. his means that two people with the same health impairment in different locations may have different disability statuses (itra et al., 2011). “Because disability is not a readily identifiable attribute such as gender or age, but a complex, dynamic interaction between a person’s health condition and physical and social environment, it has proven very difficult to measure.” (Mitra et al., 2011, p. 4)

he substantial scope for variation in approaches to defining and measuring disability poses considerable challenges. his is because even relatively small differences in the way disability is assessed (including how disability uestions are phrased, whether they are asked by a trained interviewer, and which disability thresholds are used) can have a very large impact on the final statistics (I, 200), with the effect that the results of different studies may appear to be conflicting and cannot be easily compared.20 y way of eample, consider the global prevalence of moderate and severe disability in children aged 014 years. he and the orld ank (2011) report a prevalence rate of .1,21 while iunoya, itra and amasaki (201) estimate a rate of 1.4. ow can this discrepancy be eplained Is one study right and the other wrong as substantial progress been made in recent years r did the studies measure different things In this case it appears there were important definitional and methodological differences between the studies, including that the and the orld ank analysis drew on a much broader dataset that took into account pain and discomfort, aniety and depression, and cognition and social participation (iunoya et al., 201). herefore, the results of these studies are not comparable.

In recognition of the challenges caused by inconsistent methods and approaches, the nited ations tatistical ommission established the ashington roup on Disability tatistics (ashington roup) in 2001 to promote international cooperation in disability measurement and to develop measures for use in censuses and surveys (Mitra et al., 2011; ILO, 2007). The Washington Group’s recommendations are based on the International lassification of unctioning, Disability and ealth (I), with disability defined as having severe or etreme difficulty in at least one functioning domain (seeing, hearing, walking, remembering and concentrating, selfcare or communicating) (iunoya et al., 201). owever, despite the fact that the Washington Group’s recommendations have become “one of the most widely accepted and internationally tested tools” (Mizunoya et al., 2016, p. 10), they are still far from universally utilised. eflecting this, a recent screening of approimately 2,00 household surveys and censuses from countries around the world found that less than

20 It is even necessary to be cautious when comparing the results for different countries based on a single standard, since interpretations of disability vary across countries and surveys (iunoya et al., 201). 21 ased on the lobal urden of Disease study of 2004 (2004 D).

41 Annexure: Disability - Indonesia in International Perspective

2% complied with the Washington Group’s recommendations, although, positively, Indonesia has incorporated the standards into its census (Mizunoya et al., 2016). further complication is that, even where the approach of the Washington Group is followed, there is still room for inconsistency (see section for examples). uch wide variations in the measurement of disability, and the incomparability of much of the available data, mean it is essential to approach disability statistics with caution.

Figure 1. Representation of the ICF. Source: WHO & World Bank, 2011

. The revalence of isability

“There is no agreed international standard to measure disability.” (Mitra et al., 2011, p. ii)

When assessing performance, we are accustomed to comparing countries across many indicators, from gross domestic product and poverty rates to ease of doing business, as a means of gaining insight into where things are going well and where there is a need for improvement. owever, as noted above, in the area of disability such comparisons are tricy given the wide variation in the definition, measurement and interpretation of disability, both between countries and across studies. onetheless, provided comparisons are approached with circumspection they do offer a basis for developing a sense of how a country is tracing visvis other nations around the world. It is for this reason that we outline ey intercountry prevalence rates below. When reviewing these rates, it is useful to bear in mind the differences between the studies (see Table 1 for a comparison of the principal studies referred to in this review), and that disability reflects the interaction between health impairments and the physical and cultural environment. Therefore, a low disability prevalence rate could indicate a low level of health impairments within a country (e.g. due to better nutrition, safer woring conditions and greater access to medical services) or the existence of very accommodating environments and the widespread use of assistive devices (such that health impairments do not pose barriers to participation in community life) or both. Learning more about the drivers of disability prevalence can provide valuable insight for policymaers, who have substantial scope to influence the impairmentrelated and environmental aspects of disability through welltargeted policies and programs. We return to policies in section . “Country specific estimates of disability prevalence vary tremendously.” (Mitra et al., 2011, p. iii)

42 Annexure: Disability - Indonesia in International Perspective

ased on data from the World ealth urvey of 222 (222 W, the W and the World an (2 estimated the average rate of disability prevalence among adults in developed and developing countries (representing % of the world’s population) to be 15.6%,22 with rates ranging from .% in higherincome countries to .% in lowerincome ones.2 Mitra et al. (2 also drew on the 22 2 W data in their study into the prevalence of severe disabilities among people aged to in developing countries in sia (not including ndonesia, frica and atin merica, and found substantial variation in the intercountry estimates. Their analysis revealed prevalence rates ranging from a low of .% in ao to a high of .2% in angladesh, with rates of .% in enya and Meico, .% in the hilippines, 2.% in Malawi and .% in rail.2 ignificantly, they found disability prevalence was higher among women than men in every country, and higher in rural areas than urban areas in most countries (Mitra et al., 2.

More recently, Miunoya et al. (2 drew on nationally representative data from censuses and surveys in low and middleincome countries, including Indonesia’s 2 opulation Census (2 Census, and found much lower rates of disability prevalence. ased on their estimates, the prevalence of severe disabilities in the general population aged five and above ranged from .% in ndonesia to .% in the Maldives, and was ust .% in Malawi and .% in angladesh, which is substantially lower than the rates reported by Mitra et al. (2 (see column in Table and the righthand side of Table 2 for a breadown by functioning domain (Miunoya et al., 2. ighlighting the substantial scope for variation that eists even where consistent methodologies are applied, both Miunoya et al. (2 and Mitra et al. (2 followed the recommendations of the Washington Group in their analyses.

astly, in a study on ndonesia, dioetomo et al. (2 report disability prevalence rates for mild and severe disabilities of around .% based on the 2 Census, 2 compared with over 2% based on the 2 ational asic ealth esearch (2 isesdas.2 The authors attribute this discrepancy to the more etensive uestions in the 2 isesdas and differences in the way the surveys were implemented, even though both applied approaches consistent with the Washington Group’s recommendations. verall, dioetomo et al. (2 estimate the prevalence of disability in ndonesia to be between % and %, which they suggest may be a conservative estimate. ie Mitra et al. (2, they find that disability is more prevalent among women and people living in rural areas.

22 This estimate relates to significant functioning difficulties. The average adult prevalence rate of very significant difficulties was estimated to be 2.2% (W World an, 2. 2 The W and the World an (2 obtained similar estimates based on data from the 2 G, finding that an average of .% (2.% of the world population, and .% (.% of the world’s population aged 15+, experienced a moderate (severe) disability. 2 These estimates are drawn from the study’s base measure of disability. When the expanded measure of disability is used, the prevalence rates range from a low of .% in Meico to a high of 21.48% in Brazil. For more on the study’s base and expanded measures, see Table A1. 2 imilar to Miunoya et al. (2, dioetomo et al. (2 report a prevalence rate of .% for severe disabilities based on the 2 Census. 2 f only moderate and severe disabilities are included, the 2 isesdas suggests a disability prevalence rate of around % (dioetomo et al., 2.

43 Annexure: Disability - Indonesia in International Perspective

Together, these findings illustrate the wide variation that exists in estimated disability prevalence rates, and how factors including the data source, data collection method, definition of disability, and population specifications (such as age range, gender, severity and location (including rural urban)) studies employ can significantly influence the estimates they obtain, even within a single country.

44 Annexure: Disability - Indonesia in International Perspective

Annexure: Disability - Indonesia in International Perspective

4. The Impact of isability on hildren, WoringAge Adults and ther Groups

“The disability experience resulting from the interaction of health conditions, personal factors, and environmental factors varies greatly.” (WHO & The World Ban, 211, p. )

As we have noted, people with disabilities are a heterogeneous group whose experiences vary widely based on a multitude of individual and environmental factors such as age, gender, location, type, severity and duration of disability, age of onset, socioeconomic status, access to services, and family and community attitudes. Given the diverse experiences of people with disabilities (W The World Ban, 211), together with the fact that disability research in the developing country context remains limited (itra et al., 211), it is not easy to capture the full extent of the ways in which disability impacts people’s lives. However, across broad social groups, general patterns are evident. Above all, “people with disabilities are more likely to be poor and less liely to receive an education, be employed, and be full participants in the life of their families and communities” (Adioetomo et al., 2014, p. xiv).

ere, we review the principal lins between disability and lower welfare outcomes for children, woringage adults, the elderly, the poor and the broader family. hildren

“Children with disabilities are less likely to attend school, thus … facing reduced employment opportunities and decreased productivity in adult hood.” (WHO & The World Bank, 2011, p. 10)

mpirical evidence suggests that children with disabilities face many more barriers to attending and completing school than children without disabilities (izunoya et al., 216). While some of these barriers may arise from the health impairment itself (especially in the case of very severe disabilities) (itra et al., 211), many are liely to reflect family, school and communitybased factors, which can be expected to interact with, influence and reinforce one another. onseuently, there are liely to be a wide range of reasons for disabled children not attending school that extend well beyond their health condition. In some cases, the decision not to educate a disabled child may reflect personal attitudes. For example, parents may not perceive there to be any benefit in sending a disabled child to school (izunoya et al., 216) or may be “ashamed or overly protective of their children” (Adioetomo et al., 214, p. 66). In others, it may reflect financial considerations. That is, given the financial position of a family and their disabled child’s future prospects, it may not be considered worthwhile to invest in that child’s education (Mitra et al., 211), or it may not even be possible, especially if it would reuire higherthannormal education costs (e.g. to send the child to a special school) (Adioetomo et al., 214). In further instances, it may be that the school and its broader environment are illeuipped to support the child. urricula and teaching methods may be too rigid, teachers may lac the necessary training, the school may not have the resources or physical environment to accommodate the child’s needs, negative attitudes and bullying may be pervasive

46 Annexure: Disability - Indonesia in International Perspective

(WHO & The World Bank, 2011 Adioetomo et al., 2014), or, due to limited transport options or other constraints, there may be no safe way for the child to travel to school. Additionally, in places where disabled children are not usually sent to school, the decision not to educate a disabled child might reflect community norms or cultural attitudes.

The limited available data consistently shows that disabled children are less likely to attend school than nondisabled children (Miunoya et al., 201 bnes et al., 201 Mitra et al., 2011). n addition, while there is considerable variation in the estimated rates of school attendance both between countries and studies, ndonesia regularly performs poorly. or example, in an analysis of 14 nationally representative household surveys from 1 developing countries between 12 and 2004,2 ilmer (200) found the difference between the rates of school attendance of disabled and nondisabled children (i.e. the attendance gap) ranged from a low of 10 in ndia to a high of almost 0 in ndonesia among children aged to 11, and from 1 in Cambodia to in ndonesia among children aged 12 to 1. Most significantly, this suggests that ndonesia had the highest attendance gap at both the primary and secondary school levels (see igure 2). Miunoya et al. (201) also report a wide nonattendance gap in ndonesia. They find the average difference between the proportion of disabled and nondisabled children not attending school at the primary and secondary levels to be 0.2 across 1 low to middleincome countries, and 4.2 in ndonesia. This was the secondhighest gap (after Albania (.1)), and higher than those in other countries in Asia and the acific, including ietnam (44.1), ndia (0.4), apua ew uinea (1.), and the Maldives (.). n other words, even though ndonesia has achieved close to universal primary education among non disabled children, school attendance among disabled children remains very low (Miunoya et al., 201).

The low rates of school attendance among children with disabilities in ndonesia may largely be driven by barriers that prevent many of these children from ever attending school. n their study, Miunoya et al. (201) find that 4.1 of children with severe disabilities in ndonesia do not attend primary school (compared with .0 of non disabled children), and 0. of severely disabled children do not attend secondary school (compared with 0. of nondisabled children). By disaggregating this data, they further find that 0 of outofschool disabled primaryage children have never attended school (compared with of outofschool disabled children at the secondary level), suggesting that special efforts must be made to “resolve the access bottleneck which currently prevents disabled children from going to school at all” (p. ). Adioetomo et al. (2014) form a similar conclusion,2 noting that “[a]ccording to the Ministry of ducation and Culture (MoC), close to 0 percent of children with

2 The countries in the study were Bolivia, Burundi, Cambodia, Chad, Colombia, ndia, ndonesia, amaica, Mongolia, Moambiue, omania, outh Africa and ambia. The ndonesian data was based on the 2000 ational ocioeconomic urvey. Although all of the surveys in the study included an impairmentbased definition of disability, there were substantial variations in the definitions across the datasets (ilmer, 200). 2 As does Filmer (2008), whose findings suggest “that efforts are needed to boost enrollments of children with disabilities at the earliest grades in order to increase education attainment for this population” (p. 159).

47 Annexure: Disability - Indonesia in International Perspective disabilities have no access to education” (p. 58) and that the barriers to entering and completing primary school are larger than those for secondary school. eflecting this, they find that, based on the 200 isesdas data, ndonesians with a mild or severe disability during childhood are only .8 as liely to complete primary school as their nondisabled peers, 29 while children with a mild disability are 88.2 as liely to complete secondary school.0

hese data highlight the magnitude of the challenges that children with disabilities face in obtaining an education. Further reiterating this, iunoya et al. (201) find that disability is a “powerful predictor of a child’s school attendance” (p. 26), with disability reducing the probability that a child will attend school by an average of 2.8 (and a much higher 1 in ndonesia). he authors also show that the challenges to obtaining an education confront all disabled children “regardless of their individual and socioeconomic characteristics such as se, age, household income and location of residence” (p. 6),1 that this reveals the existence of “specific hurdles … for children with disabilities which cannot be solved even for households with higher [socioeconomic status]” and that “the current inequality between educational

29 he 2010 ensus data suggests that children with a mild (severe) disability are . (2.2) as liely to complete primary school as nondisabled children (Adioetomo et al., 201). 0 he odds ratio for children with severe disabilities is a far lower 5., but Adioetomo et al. (2014) note that this “is still significantly higher than for primary school” (p. 62). 1 his is in line with the finding of Filmer (2008) that the gap in school participation associated with disability is larger than the participation gaps associated with other characteristics, such as gender, rural residence and economic status, in many countries including ndonesia.

48 Annexure: Disability - Indonesia in International Perspective outcomes of nondisabled and disabled children fundamentally arises due to the structural failure of education systems to provide sufficient support for disabled children to attend school” (p. 37).

astly, it should be noted that school attendance is a minimal measure of education (since it does not capture the extent to which disabled children who attend school are catered for and enabled to learn) (iunoya et al., 2016), and that enrolment rates also vary based on the type of disability a child has (with children with intellectual and sensory impairments generally having lower rates of attendance) ( he orld an, 2011).2 oringge dults

“People with disabilities are more liely to be unemployed and generally earn less even when employed.” (WHO & The World Bank, 2011, p. 10)

round the world, approximately 800 million people with disabilities are of woring age (ILO, 2015). Yet despite the fact that “[a]lmost all jobs can be performed by someone with a disability” (WHO & The World Bank, 2011, p. 235), many of these people are absent from the labour force. n part, this may be because people with disabilities may be less able to wor, more limited in the wor they can do, and less productive as a consequence of their health impairment, particularly where they have very severe disabilities, or lac education and training, access to accommodating worplaces and assistive devices, and the support of social initiatives such as vocational rehabilitation programs (itra et al., 2011 he orld an, 2011). owever, as with education, there are also liely to be structural, cultural and environmental drivers at play.

bove all, worplacerelated exclusionary factors are liely to be a significant contributor to both the unemployment and underemployment of people with disabilities. n many places people with disabilities face considerable obstacles to obtaining decent wor. hese include negative attitudes and discrimination (such as stigma, stereotypes and misconceptions), inaccessible wor environments (worplaces with limited physical access, signage and communication options), unaccommodating worplaces (that are unwilling to mae adustments in woring hours, tass etc. to allow for employees’ needs), social environments that lack accessible transport options and support services, and a lac of access to capital (itra et al., 2011 he orld an, 2011 dioetomo et al., 2014). n addition, in cases where they receive income through disabilitybenefit schemes, people with disabilities may choose not to wor ( he orld an, 2011), although the

2 n addition, when reviewing educationrelated disability statistics more generally, it is important to bear in mind that comparing the educational attainment of disabled and non disabled adults can be misleading to the extent that some of the respondents became disabled after their school years (and thus their disability would not have impacted their schooling) (dioetomo et al., 2014). n a study of 261 people with disabilities in thiopia, rider and ydic (2016) found that those who were given access to a wheelchair devoted 1.5 more hours per day to wor and realised a .5 increase in income.

49 Annexure: Disability - Indonesia in International Perspective etent to which this decision is driven by the lower wages and naccommodating working conditions that disabled people often enconter is nclear.3

The difficlty in determining the natre and etent of sch labor market and other barriers is eacerbated by the fact that reliable, detailed and ptodate data on the employment of people with disabilities remains limited in many contries, and in developing contries in particlar (WHO & The World Bank, 2011 ILO, 2007). evertheless, the available evidence overwhelmingly sggests that people with disabilities have lower rates of employment than people withot disabilities. ccording to the 2002200 WH data from 5 developed and developing contries, the employment rate for disabled men was 52. (compared with . for non disabled men), and jst 1. for disabled women (compared with 2. for non disabled women) (WHO & The World Bank, 2011). In addition, itra et al. (2011) report that a large majority of stdies condcted in contries in sia, frica, oth merica and astern rope, inclding their own, have fond that people with disabilities are less likely to be employed than people withot disabilities (see igre 3 for an eample of the differences in employment rates in India, ordon, Per and oth frica).

In Indonesia, the 2010 enss revealed a similar pattern, with the employment rate of people with mild disabilities being lower (5.), and with severe disabilities being sbstantially lower (2.), than the employment rate of the nondisabled (.1) (dioetomo et al., 201). otably, the 2007 iskesdas data painted a different pictre, sggesting that people with mild disabilities had a slightly higher rate of working

3 The availability of social protection for people with disabilities is an important policy area. While a detailed analysis of disabilityrelated social assistance is beyond the scope of this review, we note that the sian evelopment Bank (2013) fond disability payments to comprise an etremely small component of social assistance in sia and the Pacific, “accounting for only 3% of total social assistance expenditres and 2 of beneficiaries. With rare eceptions [sch as in apan, ar, ingapore, Tajikistan and bekistan], these programs are small, and in abot onethird of countries hardly exist” (p. 87). In Indonesia, while a ocial ssistance for everely isabled Persons cheme (OB) is in place, its coverage is so low that Adioetomo et al. (2014) describe the program as “almost insignificant” (p. 105). However, people with disabilities may also receive other forms of social protection payments, sch as health, food or old age benefits, where available.

50 Annexure: Disability - Indonesia in International Perspective

(5.72%), and people with seere disabilities only a moderately lower rate of woring (47.3%), than people without disabilities (57.3%). oweer, Adioetomo et al. (2014) attribute this anomalous result to possible problems with the survey’s data on labour actiity and the nature of its definition of mild disability.

astly, it is significant that, een where general employment figures are aailable, there is much that they do not disclose. Aboe all, they hide the fact that the employment rate of the disabled aries substantially based on age, age of onset, gender, and type and seerity of disability, and does not coney anything about wages, the type of employment nor the uality of employment (Adioetomo et al., 2014 he orld an, 2011). his is important gien that people with disabilities freuently wor in lowpaid obs with poor woring conditions and obs for which they are oerualified, that people with certain disabilities (such as intellectual and mental health impairments) face greater challenges in obtaining employment, that disabled women are less liely to hae a decent ob than nondisabled women or disabled men (I, 2013), and that people with disabilities are more liely to be self employed (Adioetomo et al., 2014). he lderly

“Older people are disproportionately represented in disability populations.” ( he orld an, 2011, p. 35)

he elderly are at higher ris of haing a disability than younger people. his is because, as a consequence of a lifetime’s accumulation of health risks and increasing frailty, they are more liely to experience inury, chronic illness and other health impairments ( orld an, 2011). eflecting this, it has been estimated that 43.4% of people oer 0 hae a disability in lowerincome countries (2.5% in higherincome countries), and that the elderly comprise a substantial proportion of the disabled population around the world ( orld an, 2011). or example, in ri ana, while only .% of the general population were 5 or older in 2001, the 5 cohort represented 22.5% of the people with disabilities ( orld an, 2011).

onsistent with this, disability prealence in Indonesia appears to be highest among the elderly. According to the 2007 isesdas, 4.% of Indonesians aged 5 or older had a seere disability, compared with 4.1% of youths and .3% of people aged 25 to 4 (Adioetomo et al., 2014). If mild disabilities are included, this proportion umps to 72.4% of people aged 5 or oer (compared with 12% of youths and 24.8% of people between 25 and 4) (see igure 4) (Adioetomo et al., 2014). Interestingly, howeer, Adioetomo et al. (2014) find that haing a disability has less of an effect on the consumption of the elderly than the nonelderly, possibly because they hae more resources (such as assets and children) to draw on for support.

he higher prealence of disability among older people is liely to become increasingly important as populations age in many countries, including Indonesia, oer the coming decades (aial, 201 Adioetomo, ont Irwanto, 2014). eflecting this, studies such as those by ayne, andawire and ohler (2013), which inestigated physical limitations and ageing in alawi, and lores, Ingenhaag and aurerb (2015), which analysed the wellbeing of older people with disabilities in fie

51 Annexure: Disability - Indonesia in International Perspective low and middleincome countries including hina and ndia, have highlighted the importance of interventions to support elderly people with disabilities in developing countries.

he oor

“[D]isability may increase the risk of poverty, and poverty may increase the risk of disability.” (WHO & The World Bank, 2011, p. 10)

isability and poverty are closely linked. lthough there is little systematic empirical evidence demonstrating the relationship between the two itra et al., , it appears probable that having a disability increases a person’s likelihood of being poor, while being poor increases a person’s likelihood of having a disability. It is for this reason that disability is considered a development issue O he orld ank, . he principal way in which disability may lead to poverty is by reducing a person’s earnings and increasing their expenditures (Mitra et al., 2011). s noted above, people with disabilities are less likely to attend school and gain employment, and when they do work, they typically earn lower wages. n addition, disabled people are likely to spend more on health care, transportation, assistive devices, personal assistance and other support services itra et al., O he orld ank, . n the reverse case, poverty may also lead to disability. his is because being

One factor that may weaken this link is the availability of disability benefits that replace earnings and cover disabilityrelated ependitures itra et al., . or a brief note on social protection programs for people with disabilities, see footnote . he fact that people with disabilities are likely to face higher living costs means traditional poverty lines, which represent a minimum standard of living for nondisabled people, may not

52 Annexure: Disability - Indonesia in International Perspective poor may both increase a person’s risk of having a health condition associated with disability (e.g. due to alnutrition, lack of clean water, and unsafe work and living conditions), and the risk of an existing health ipairent becoing ore severe (such as through a lack of access to health services, assistive devices or an accessible physical environent) (WHO & World Bank, 2011 Mitra et al., 2011 dioetoo et al., 201).

Highlighting the association between disability and poverty, in all 1 of the developing countries studied by Mitra et al. (2011), people with disabilities were found to be “significantly worse off in several dimensions of econoic wellbeing” (p. iv). The study also found that people with disabilities were significantly ore likely to experience ultidiensional poverty than people without disabilities, and that households with a disabled household eber were likely to have substantially fewer assets and considerably higher healthcare expenditures (we return to these results in connection with the ipact of disability on the faily below).

vidence fro Indonesia siilarly suggests that the disabled are ore likely to be aong the poorest of the poor. Drawing on data fro the 200 iskesdas, dioetoo et al. (201) find that people with disabilities are 0 to 0 ore likely to be poor than nondisabled people (particularly in urban areas) and that, even when copared with other lowincoe people, those with disabilities are concentrated towards the botto of the incoe distribution. astly, it is worth noting that, where data is collected at the household level, that data ay understate the incidence of poverty aong the disabled to the extent that people with disabilities in nonpoor households do not receive an adeuate share of incoe and resources (Mitra et al., 2011). The aily

“[M]any nondisabled people take responsibility for supporting and caring for their relatives and friends with disabilities.” (WHO & The World Bank, 2011, p. 3)

tudies on disability often focus on the ipact of having a disability on the disabled. However, in any cases the ipact of disability extends far beyond those with disabilities to the lives of their failies, friends, schools, workplaces and counities. Of these broader groups, it is a disabled person’s family that is likely to be most affected by the responsibilities of caring for the. The extent and nature of this ipact can also be expected to vary substantially depending on factors including the type and severity of the family member’s disability, the family’s socioeconomic position,

fully capture poverty aongst the disabled and households with disabled household ebers. As Mont and Cuong (2011) note, “ignoring the extra costs of disability eans that poverty statistics can iss these households [with people with disabilities] whose standard of living, if the higher costs were taken into account, would be eual to that of poor households without people with disabilities” (p. 340). or exaple, ubbaraan et al. (201) find that slurelated stressors are associated with a risk of ental illness and disability in an Indian slu. It should be noted that in soe cases wealth ay also lead to disability, such as by increasing the incidence of otorcycle ownership and thus the risk of road traffic inuries (Mitra et al., 2011).

53 Annexure: Disability - Indonesia in International Perspective who the disabled family member is, whether the disabled person lives with the family, and whether care services or social assistance programs are in place (Mitra et al., 2011). or example, a family with a child who has a disability and access to support services is likely to be in a very different position to a family whose principal income earner becomes disabled and for whom no assistance is available, or a family whose elderly grandparent becomes disabled in later life.

This diversity means there are many ways in which a family can be affected by having a disabled family member. However, the principal impacts appear to relate to family finances and uality of life. amilies with a disabled household member may have lower household incomes (particularly where the disabled family member used to earn income or a family member is unable to work due to caring responsibilities), higher household expenses (e.g. to pay for healthcare or support services) and lower standards of living (e.g. greater food insecurity and poorer housing) (Mitra et al., 2011 WHO & The World Bank, 2011). n addition, family members may bear caring responsibilities (such as providing assistance with selfcare, shopping, cooking or managing money), experience a lower uality of family life (Adioetomo et al., 2014), and receive less assistance and support within the family. eflecting this, studies based on data from the nited tates have shown that having a disabled child negatively affects a mother’s labour market activity (Powers, 2003), particularly where her children have physical disabilities or selfcare limitations (as compared with mental, emotional, cognitive or sensory conditions) (Wasi, van den Berg & Buchmueller, 2012). n addition, a study in ietnam found that the disability of a parent may negatively affect their nondisabled children’s school attendance rates (Mont & guyen, 2013), while a Canadian study showed that higher disability benefit payments can help reduce the gap in developmental outcomes between the children of poor disabled and nondisabled parents (Chen, Osberg & hipps, 201).

To date, the results of the limited but growing body of empirical evidence on the economic wellbeing of households with a disabled household member in developing countries have been mixed. or example, while studies in Africa and Asia have found households with a disabled household member to have fewer assets than other households, the findings in respect of household income, expenditure and living conditions have been less conclusive. Mitra et al. (2011) found that households in which a person had a disability tended to be worse off across a range of poverty measures, although results varied depending on the measure used. n particular, households with a disabled household member had a significantly lower level of average asset ownership in most countries (11 out of 1), were overrepresented among those with the lowest asset ownership in around half the countries ( out of 1), and spent a significantly higher proportion of their expenditure on health care in two thirds of the countries (10 out of 14).3

3 These estimates are drawn from the study’s base measure of disability (see Table A1 for more on the study’s base and expanded measures).

54 Annexure: Disability - Indonesia in International Perspective

n ndonesia, the 200 iskesdas data suests that households with a disabled household member are likely to have lower consumption than households in which no one has a disability, except where they are very rich (Adioetomo et al., 201). t has also been estimated that the costs associated with livin in a household in which someone has a disability are on averae hiher than livin in a household in which no one has a disability, and as much as 30 hiher in some provinces (irrespective of whether a low or hih threshold measure is used), but that in the ten most populous provinces the averae costs are around hiher (see Table 3).0 This is of a similar manitude to the findin of Mont and uon (2011) in ietnam, where the extra costs of disability were estimated to be 11., based on data from the 200 ietnam ousehold ivin tandards urvey.

n relation to uality of life, the ndonesian 2012 urvey on the eed for ocial Assistance Prorammes for People with isability (APP) revealed that, of those respondents with more sinificant disabilities, nearly twothirds said their disability caused financial problems, more than half said it affected family life, and up to a uarter said that their disability made their family unhappy (Adioetomo et al., 201). The impacts were less pronounced, but still notable, amon those with mild disabilities – about half said their disability caused financial problems, over a third said family life was affected, and up to one fifth said their disability to make their family unhappy. iven that up to .2 of households in ndonesia are estimated to include a mildly

0 These estimates represent the extra expenses incurred by households in which a person has a disability, and not necessarily the extra costs associated with maintainin a ood uality of life for a disabled person. This is because the cost of items and services that households chose to foreo (e.. where a prosthetic limb was not purchased despite a need for one), or received for free, are not included.

55 Annexure: Disability - Indonesia in International Perspective

and “nearly one lds with a person aged 60 years or older contain a person with a disability”

“In the current context, perhaps the most important omission from the ms of policy.” (Jones, 2016, p.

people’s attitudes and mindsets is of particular relevance (Adioetomo et al., 2014).

reflected in the finding of Mizunoya et al. (2016) that even “countries which are able the situation of disabled children” (p. 19), which suggests that the effect of current

Mitra et al. (2011)’s results “suggest that policies that promote access to education, health th disabilities” (p. 63). Sæbønes et al. (2015) note that “[w]ithout reliable data, children with disabilities are funding and political will” (p. 4).

56 Annexure: Disability - Indonesia in International Perspective education policies on disabled children is, at most, liely to be limited and that substantial structural ineuities remain. It is therefore unsurprising that many priority issues have been identified in this area.

owever, ensuring that children with disabilities have access to school from the earliest years seems to be particularly important (Mizunoya et al., 2016 Sæbønes et al., 2015 ilmer, 200).44 rereuisites for this include fostering enabling home and community environments and accessible, inclusive schools, supporting the development of welltrained teachers and appropriate teaching and learning materials, and broadening the availability of assistive devices (Mizunoya et al., 2016 Sæbønes et al., 2015). onsistent with this, the orld an has been involved in a range of programs that promote inclusive education for children with disabilities, including the Intergenerational eaf ducation utreach pilot program, which taught sign language to 260 very young deaf children in ietnam to help prepare them for school, the ogo ducation and Institutional Strengthening roect, which built almost 1,000 accessible classrooms that now serve over 42,000 children in ogo, and India’s Sarva Shisha Abhiyan program, which is seeing to deliver primary education to all children, including disabled children, across India (orld an, 2015).45

he development of employment policy suffers from many of the impediments that apply in the area of education. In particular, there appears to be a lac of consensus on what constitutes effective policy for people with disabilities, which is at least partly due to the fragmented nature of much of the evidence and the complexity of the policy area (Jones, 2016). otwithstanding this, there is a general recognition of the need for policies “addressing the physical, social, economic and cultural barriers that prevent people with disabilities from accessing decent work… [including] lack of access to education, lack of skills required in the labour market, … as well as inaccessible built environments, information and public transport and lac of affirmative action and reasonable accommodation provisions in laws and policies” (I, 2013, p. 2). In connection with this, the I is supporting a number of policies and programs that appear promising, although we are not aware of rigorous evaluations of them. hese include assisting the overnment of ambia to provide eual employment and vocational training opportunities for people with disabilities and to improve the accessibility of public vocational training programs, and delivering training to around 500 people with disabilities as part of the angladesh Sills for mployment and roductivity roect. In Indonesia, the I is supporting the piloting of a program to train and place people with disabilities, and provide advice about employing people with disabilities, within the garment sector as part of the etter or rogramme (I, 2015). Adioetomo et al. (2014) also note the wor of employer organisations such as the usiness isability orum in the nited ingdom and the

44 This is especially so given that “[a] child’s education lays the cornerstone for his or her future life, not only in terms of income but their overall wellbeing” (Mont & Nguyen, 2013, p. 88. 45 he orld an (2015) reported that, through the Sarva Shisha Abhiyan program, “[t]he share of children with special needs enrolled at [the primary and upper primary levels] has risen from 4 in 201213 to nearly 90% today. … In addition, over 116,000 children with special needs receive homebased education, taing the total coverage of identified children to 96 or nearly 2.7 million under Sarva Shiksha Abhiyan”.

57 Annexure: Disability - Indonesia in International Perspective

mployers ederation of eylon in Sri anka, which have partnered with the private sector as a means of encouraging the establishment of accessible work practices in their countries.

“[P]olicy and programmatic approaches adopted to improve the lives of people with disabilities must be designed with sufficient fleibility to adapt to local conditions and concerns.” (Adioetomo et al., 2014, p. xviii)

Above all, there is a need for education and employment policy that is epressly designed for people with disabilities. eflecting this, Miunoya et al. (2016 find that “traditional education policies that increase general attendance do little to benefit disabled children” (p. 36). Adioetomo et al. (2014) point to a lack of “systematic effort [in Indonesia] to make governmental training programmes accessible to people with disabilities or to establish a government programme that focuses on them” (p. 82). More generally, ones (2016 notes that the government can play an important role by providing incentives for employers to employ disabled workers. This calls attention to two critical aspects of disability policy formulation in the future. irst, policies must be tailored, not only for people with disabilities generally, but also to the needs of people with particular types of functional limitations in the specific environments in which they live and the barriers they face. This means that policy requirements are likely to vary from country to country, province to province, and by disability type. Second, further research is needed to trial programs and evaluate interventions so as to determine which are most effective and in what circumstances. This is particularly critical given that, as Mitra et al. (2011) state, “[s]ome interventions, such as communitybased rehabilitation, have long been in the field, but little is known on what works” (p. 6. 6. onclusion

“Robust evidence helps to make well informed decisions about disability policies and programmes.” (WHO & The World Bank, 2011, p. 21)

isability is a comple, heterogeneous phenomenon that significantly reduces participation in education and employment, disproportionately impacts the lives of the elderly and the poor, and has farreaching consequences for affected families, but about which much remains unknown. Above all, a lack of consistent, reliable and uptodate data has substantially constrained the current understanding of who is affected by disability, in what ways and why, especially in developing countries. This is evident in Indonesia, where estimates of disability prevalence range from 0.8% based on a narrower eamination of severe disability, through to over 2% using a more etensive measure where mild disability is included. 6 Nevertheless, while specific estimates vary, general trends are apparent. In particular, the available data suggests that, as in many other countries, a significant proportion of the Indonesian population is directly or indirectly affected by disability, prevalence is higher among the poor and the elderly, and substantial barriers to employment and education persist.

6 These estimates are discussed in section 3 on this anne.

58 Annexure: Disability - Indonesia in International Perspective

Most striking of all is the extent to which ndonesia lags behind other countries in respect of the gap between disabled and nondisabled children’s school attendance. This is an area in which a paucity of data poses a considerable hindrance for policy development since, as Miunoya et al. (2016) note, “in the absence of internationally comparable data, … governments rarely possess the necessary evidence required to design appropriate policy adaptations and enhancements to improve the situation of disabled children” (p. 8). Their comment eually applies to the development of policy to assist people with disabilities more broadly.

t follows that there is a pressing need for highuality, dependable data, and especially longitudinal data (Mitra et al., 2011), that will allow detailed analyses of the key barriers that prevent people with disabilities from participating fully in education and employment, and the most effective ways to address them. mportantly, while the increasing focus of disability data on functioning is welcome, the collection of functioningrelated data in conunction with data on the type and extent of physical or mental disability remains essential. Without the latter, it is not possible to analyse the impact a health impairment has on functioning, nor to assess the extent to which policies alleviate functioning difficulties (as high functioning responses could merely reflect a low prevalence of health impairments).

urther rigorous analysis would develop a deeper understanding of the impact of disability in the developing world and provide a sound basis for policy aimed at increasing the ability of the disabled to participate fully in society. iven that disability is fundamentally a human rights issue, over twofifths of ndonesian households are thought to be affected by it (Adioetomo et al., 2014),4 and developing countries are estimated to lose up to of their gross domestic product due to the exclusion of persons with disabilities from the labour market (O, 201), progress in this area would be highly valuable.

4 ee footnote 41.

59 Annexure: Disability - Indonesia in International Perspective

nneure eferences

dioetomo, . ., ont, ., ranto. (201). Persons with disabilities in Indonesia: Empirical facts and implications for social protection policies. aarta, ndonesia emographic nstitute, aculty of conomics, niversity of ndonesia in collaboration ith Tim asional ercepatan enanggulangan emisinan (T2).

sian evelopment an. (201). The social protection index. andaluyong ity, hilippines sian evelopment an.

hen, ., sberg, ., hipps, . (201). ntergenerational effects of disability benefits evidence from anadian social assistance programs. Journal of Population Economics, 28, 810.

aial, . . (2016, ay 26). ndonesia face riss of rapid aging population. The Jakarta Post. etrieved from http.theaartapost.com.

ilmer, . (2008). isability, poverty, and schooling in developing countries esults from 1 household surveys. The World Bank Economic Review, 22(1), 1116.

lores, ., ngenhaag, ., aurer, . (201). n anatomy of oldage disability Time use, affect and eperienced utility. Journal of Health Economics, , 10160.

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nternational abour rganiation. (200). The employment situation of people with disabilities: Towards improved statistical information. eneva, iterland nternational abour ffice.

nternational abour rganiation. (201). riority issues and recommendations for disability inclusion in the ost 201 genda – orld of or. eneva, iterland nternational abour ffice.

nternational abour rganiation. (201). ILO and disability inclusion ( ). eneva, iterland nternational abour ffice.

ones, . (2016). isability and labor maret outcomes. IZA World of Labor, 2, 110.

itra, ., osarac, ., ic, . (2011). Disability and poverty in developing countries: A snapshot from the World Health Survey ( iscussion aper o. 110). ashington, The orld an.

iunoya, ., itra, ., amasai, . (2016). Towards inclusive education: The impact of disability on school attendance in developing countries (nnocenti oring aper o. 20160). lorence, taly ffice of esearch.

ont, ., uong, . . (2011). isability and poverty in ietnam. The World Bank Economic Review, 2(2), 2.

ont, ., guyen, . (201). oes parental disability matter to child education vidence from ietnam. World Development, 8, 88–10.

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The Lancet

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Annexure: Disability - Indonesia in International Perspective

such as “Do you have questions, such as “In the past when wearing glasses?” covered in the Washington Group’s short set of and “Do care?”, glasses / contact lenses?” and “In maintain friendships?”, and five

Annexure: Disability - Indonesia in International Perspective

eople were classified as eople were classified as having a person was identified as having a disaility if having a mild disaility if disaility that was mild if they had a they gave a positive response to the top response they had a little difficulty in little or mild difficulty in at least one category if there were three severity levels or one one or more functional domain ut never severe or very of the upper two response categories if there domains ut did not have severe difficulty, and severe if they were more than three severity levels in at least a lot of difficulty in any had severe or very severe difficulty one domain herefore, this study focused on functional domain eople in at least one domain In addition, people with severe disailities were classified as having a a low disaility threshold captured severe disaility if they had those eperiencing mild and severe a lot of difficulty in at least disailities, while a high disaility one functional domain threshold covered those only eperiencing severe disailities

Disability in Indonesia: What can we learn from the data?

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