Smy h, Eme ; Russell, Helen
Resea ch Repo
T ends in disabili y p e alence among young people:
Insigh s om he G owing Up in I eland s udy
Resea ch Se ies, No. 192
P o ided in Coope a ion wi h:
The Economic and Social Resea ch Ins i u e (ESRI), Dublin
Sugges ed Ci a ion: Smy h, Eme ; Russell, Helen (2024) : T ends in disabili y p e alence among young
people: Insigh s om he G owing Up in I eland s udy, Resea ch Se ies, No. 192, The Economic and
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TRENDS IN DISABILITY PREVALENCE
AMONG YOUNG PEOPLE: INSIGHTS FROM
THE GROWING UP IN IRELAND STUDY
EMER SMYTH AND HELEN RUSSELL
RESEARCH
SERIES
NUMBER 192
OCTOBER 2024
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TRENDS IN DISABILITY PREVALENCE AMONG
YOUNG PEOPLE: INSIGHTS FROM THE
GROWING UP IN IRELAND STUDY
Eme Smy h
Helen Russell
Oc obe 2024
RESEARCH SERIES
NUMBER 192
A ailable o download om www.es i.ie
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Whi ake Squa e, Si John Roge son’s Quay, Dublin 2
h ps://doi.o g/10.26504/ s192
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ABOUT THE ESRI
The Economic and Social Resea ch Ins i u e (ESRI) ad ances e idence-based
policymaking ha suppo s economic sus ainabili y and social p og ess in I eland.
ESRI esea che s apply he highes s anda ds o academic excellence o challenges
acing policymake s, ocusing on en a eas o c i ical impo ance o 21s cen u y
I eland.
The Ins i u e was ounded in 1960 by a g oup o senio ci il se an s led by
D T.K. Whi ake , who iden i ied he need o independen and in-dep h esea ch
analysis. Since hen, he Ins i u e has emained commi ed o independen
esea ch and i s wo k is ee o any exp essed ideology o poli ical posi ion. The
Ins i u e publishes all esea ch eaching he app op ia e academic s anda d,
i espec i e o i s indings o who unds he esea ch.
The ESRI is a company limi ed by gua an ee, answe able o i s membe s and
go e ned by a Council, comp ising up o 14 ep esen a i es d awn om a c oss-
sec ion o ESRI membe s om academia, ci il se ices, s a e agencies, businesses
and ci il socie y. Funding o he ESRI comes om esea ch p og ammes suppo ed
by go e nmen depa men s and agencies, public bodies, compe i i e esea ch
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o Public Expendi u e NDP Deli e y and Re o m.
Fu he in o ma ion is a ailable a www.es i.ie.
THE AUTHORS
Eme Smy h and Helen Russell a e Resea ch P o esso s a he Economic and Social
Resea ch Ins i u e (ESRI) and hold adjunc p o esso posi ions a T ini y College
Dublin (TCD).
ACKNOWLEDGEMENTS
This publica ion was unded by he Depa men o Child en, Equali y, Disabili y,
In eg a ion and You h (DCEDIY) h ough a join Resea ch Pa ne ship wi h he ESRI.
The iews, opinions, indings, conclusions and/o ecommenda ions exp essed
he e a e s ic ly hose o he au ho s. They do no necessa ily e lec he iews o
he DCEDIY, which akes no esponsibili y o any e o s o omissions in, o o he
accu acy o , he in o ma ion con ained in his publica ion. I is p esen ed o in o m
and s imula e wide deba e among he policy communi y and among academics
and p ac i ione s in he ield. We a e g a e ul o G áinne Collins, Cia a Pidgeon,
Tony Fahey, Aisling Mu ay and Ei hne Fi zge ald o hei ad ice and suppo o
he p ojec . Use ul commen s we e p o ided by he ex e nal e iewe , wo ESRI
e iewe s and he edi o , Anne Nolan. As always, we a e g a e ul o he G owing
Up in I eland (GUI) S udy Team and he amilies in ol ed in GUI o making his
esea ch possible.
GUI is he na ional longi udinal s udy o child en, unded by Go e nmen . The
p ojec is managed and deli e ed h ough a collabo a ion be ween he DCEDIY and
he Cen al S a is ics O ice (CSO). Resul s in his epo a e based on analyses o
s ic ly con olled Resea ch Mic oda a Files p o ided by he Cen al S a is ics O ice
(CSO) and o Anonymised Mic oda a Files p o ided by he I ish Social Science Da a
A chi e (ISSDA). The CSO does no ake any esponsibili y o he iews exp essed
o he ou pu s gene a ed om his esea ch.
This epo has been accep ed o publica ion by he Ins i u e, which does no i sel ake ins i u ional
policy posi ions. All ESRI Resea ch Se ies epo s a e pee e iewed p io o publica ion. The
au ho (s) a e solely esponsible o he con en and he iews exp essed.
Table o con en s | i
TABLE OF CONTENTS
ABBREVIATIONS ......................................................................................................................................
EXECUTIVE SUMMARY ........................................................................................................................... i
CHAPTER 1 INTRODUCTION: THE MEASUREMENT OF DISABILITY PREVALENCE ................................... 1
1.1 Backg ound o he s udy............................................................................................................... 1
1.2 In e na ional esea ch on ends in disabili y p e alence among child en and young
people ........................................................................................................................................... 1
1.3 Exis ing measu es o disabili y among child en and young people in I eland ............................. 4
1.4 Disabili y p e alence using G owing Up in I eland da a ............................................................... 7
1.4.1 P e ious esea ch using GUI da a ............................................................................................................................................................ 7
1.4.2 New es ima es o changes in p e alence o e ime......................................................................................................... 7
1.5 Conclusions ................................................................................................................................. 15
CHAPTER 2 TRENDS IN THE PROFILE OF YOUNG PEOPLE WITH DISABILITIES ...................................... 17
2.1 In oduc ion ................................................................................................................................ 17
2.2 Socio-demog aphic p o ile ......................................................................................................... 17
2.3 Heal h and wellbeing by disabili y s a us ................................................................................... 22
2.4 Conclusions ................................................................................................................................. 27
CHAPTER 3 OUTCOMES AMONG YOUNG PEOPLE WITH DISABILITIES ................................................. 29
3.1 In oduc ion ................................................................................................................................ 29
3.2 Rela ionships wi h pa en s ......................................................................................................... 29
3.3 Rela ionships wi h pee s............................................................................................................. 33
3.4 In ol emen in spo s ................................................................................................................. 35
3.5 A i udes o school...................................................................................................................... 36
3.6 Conclusions ................................................................................................................................. 37
CHAPTER 4 CONCLUSIONS AND IMPLICATIONS FOR POLICY ............................................................... 38
4.1 In oduc ion ................................................................................................................................ 38
4.2 The p e alence o long-las ing condi ions and disabili y ........................................................... 38
4.3 Disabili y, heal h and wellbeing .................................................................................................. 39
4.4 Disabili y and adolescen ou comes ........................................................................................... 39
4.5 Implica ions o policy ................................................................................................................ 40
REFERENCES .....................................................................................................................................................................................................................................................42
ii | T ends in disabili y p e alence among young people
LIST OF TABLES
Table 1.1 Measu es o long-las ing condi ions, disabili y and special educa ional needs
o e wa es and coho s ..................................................................................................... 8
Table 1.2 Measu es o ypes o condi ions o e wa es and coho s ............................................... 10
Table 2.1 Mul inomial logi model o ac o s associa ed wi h disabili y s a us ( ela i e
isk a ios) (Base ca ego y: no long-las ing condi ion o disabili y) ................................. 19
Table 3.1 Reg ession models o pa en –child ela ionships a age 13 and changes o e
ime .................................................................................................................................. 30
Table 3.2 O de ed logi model o numbe o close iends a age 13 and changes o e
ime (Odds a ios) ............................................................................................................. 33
Table 3.3 OLS eg ession model o pee p oblems (SDQ subscale) a age 13 and changes
o e ime .......................................................................................................................... 34
Table 3.4 Logis ic eg ession model o daily in ol emen in o ganised spo s and
changes o e ime (Odds a ios) ...................................................................................... 35
Table 3.5 O dinal logi model o nega i e a i udes o school a age 13 and changes o e
ime (Base g oup: like school e y much) (Odds a ios)................................................... 36
LIST OF FIGURES
Figu e 1.1 Types o condi ions o di icul ies as a pe cen age o 13-yea -olds wi h a
disabili y, Census 2022 ....................................................................................................... 4
Figu e 1.2 P opo ion o hose wi h selec ed condi ions among hose wi h a disabili y by
age, Census 2022 ................................................................................................................ 5
Figu e 1.3 Census es ima es o pe cen age o 9- and 13-yea -olds wi h a disabili y, 2011–
2022 .................................................................................................................................... 6
Figu e 1.4 P e alence o long-las ing condi ions a 9 and 13 yea s o age, dis inguishing
be ween hose who a e and a e no hampe ed by ha condi ion, as epo ed
by mo he s ....................................................................................................................... 11
Figu e 1.5 P e alence o special educa ional needs a 9 yea s o age, as epo ed by
eache s ............................................................................................................................ 12
Figu e 1.6 P opo ion o 13-yea -olds wi h a long-las ing condi ion ha ha e been
diagnosed wi h one o mo e condi ions by coho .......................................................... 13
Figu e 1.7 Types o long-las ing condi ion (la ges g oups) as pe cen age o o al
popula ion (wi h and wi hou a long-las ing condi ion) .................................................. 13
Figu e 1.8 Type o condi ion o di icul y as a p opo ion o hose in he non-hampe ed
long-las ing condi ion and disabili y g oups, 13-yea -olds o Coho ’08 ........................ 14
Figu e 1.9 P e alence o emo ional and beha iou di icul ies in he school, as epo ed
by school p incipals .......................................................................................................... 15
Figu e 2.1 Disabili y s a us a age 13 by gende and coho ............................................................. 17
Lis s o ables and igu es | iii
Figu e 2.2 P edic ed pe cen age wi h a disabili y by gende and coho ......................................... 20
Figu e 2.3 P edic ed pe cen age wi h a disabili y by pa en al educa ion and coho ...................... 20
Figu e 2.4 P edic ed pe cen age wi h a disabili y by social class and coho ................................... 21
Figu e 2.5 Type o condi ion among hose wi h a disabili y ( ha is, hampe ed by ha
condi ion) by gende , Coho ’08 ..................................................................................... 22
Figu e 2.6 Pe cen age ha ing a leas some heal h p oblems by disabili y s a us and
coho a age 13 ............................................................................................................... 23
Figu e 2.7 Mean dep ession sco e (CES-D) by gende , disabili y s a us and coho ......................... 24
Figu e 2.8 Mean le el o socio-emo ional di icul ies (SDQ subscales) by disabili y s a us
and coho : boys ............................................................................................................... 24
Figu e 2.9 Mean le el o socio-emo ional di icul ies (SDQ subscales) by disabili y s a us
and coho : gi ls ................................................................................................................ 25
Figu e 2.10 Mean le el o socio-emo ional di icul ies (SDQ o al di icul ies) by disabili y
s a us and coho : boys .................................................................................................... 26
Figu e 2.11 Mean le el o socio-emo ional di icul ies (SDQ o al di icul ies) by disabili y
s a us and coho : gi ls ..................................................................................................... 26
Figu e 2.12 Pe cen age wi h a ‘p oblema ic’ o ‘bo de line’ SDQ sco e (14 o mo e) by
gende , disabili y s a us and coho ................................................................................. 27
Figu e 3.1 P edic ed mo he –child con lic by disabili y s a us ac oss coho s ................................ 31
Figu e 3.2 P edic ed a he –child con lic by disabili y s a us ac oss coho s .................................. 31
Figu e 3.3 P edic ed pe cen age o young people who ge on e y well wi h hei mo he
by disabili y s a us ac oss coho s .................................................................................... 32
Figu e 3.4 P edic ed ma e nal esponsi eness by disabili y s a us ac oss coho s .......................... 32
Figu e 3.5 P edic ed pe cen age o young people wi h ou / i e o six o mo e close
iends by disabili y s a us ac oss coho s........................................................................ 34
Figu e 3.6 P edic ed SDQ pee p oblems by disabili y s a us ac oss coho s ................................... 35
Figu e 3.7 P edic ed pe cen age o young people in ol ed in o ganised spo s a leas
weekly by disabili y s a us ac oss coho s ....................................................................... 36
Figu e 3.8 P edic ed pe cen age o young people who like school e y much by disabili y
s a us ac oss coho s ........................................................................................................ 37
i | Abb e ia ions
ABBREVIATIONS
ADHD A en ion de ici hype ac i i y diso de
AME A e age ma ginal e ec
ASD Au ism spec um diso de
CES-D Cen e o Epidemiological S udies-Dep ession
DCEDIY Depa men o Child en, Equali y, Disabili y, In eg a ion
and You h
ESPSEN Educa ion o Pe sons wi h Special Educa ional Needs
Ac
GUI G owing Up in I eland s udy
HRB Heal h Resea ch Boa d
ICD In e na ional Classi ica ion o Diseases
LLC Long-las ing illness, condi ion o disabili y
NCSE Na ional Council o Special Educa ion
NIDD Na ional In ellec ual Disabili y Da abase
OLS O dina y leas squa e ( eg ession model)
PISA P og amme o In e na ional S uden Assessmen
SDQ S eng hs and Di icul ies Ques ionnai e
SEN Special educa ional needs
4 | T ends in disabili y p e alence among young people
1.3 EXISTING MEASURES OF DISABILITY AMONG CHILDREN AND
YOUNG PEOPLE IN IRELAND
In Census 2022, he iden i ica ion o disabili y is based on wo ques ions: whe he
he pe son expe iences a long-las ing condi ion o di icul y; and whe he , as a
consequence o his condi ion, hey ha e di icul y wi h day- o-day o wo k asks.
Those who epo ed any di icul ies in ei he ques ion we e coun ed as ha ing a
disabili y. Census 2022 igu es indica e ha 12 pe cen o 9-yea -olds and 14 pe
cen o 13-yea -olds we e epo ed o ha e a disabili y. A bo h ages, a es we e
highe o males han o emales, hough he gende gap was somewha na owe
a 13 han a 9 (15.8 s. 12.5 pe cen a 13; 14.7 s. 9.5 pe cen a 9). Figu e 1.1
shows he ypes o condi ions o di icul ies as a pe cen age o 13-yea -olds wi h a
disabili y. The main di icul ies ela e o lea ning o psychological di icul ies, wi h
o e hal epo ed o ha e di icul ies in lea ning, emembe ing o concen a ing.
One-qua e a e epo ed o ha e a ision impai men , hough his g oup is
indica ed as being a ec ed o some ex en a he han o a g ea ex en ,
p esumably including condi ions ha can be co ec ed.
FIGURE 1.1 TYPES OF CONDITIONS OR DIFFICULTIES AS A PERCENTAGE OF 13-YEAR-
OLDS WITH A DISABILITY, CENSUS 2022
Sou ce: Census 2022.
No e: To als add o mo e han 100 pe cen because mul iple di icul ies can be indica ed.
Howe e , he Census da a p o ide in e es ing insigh s in o he p e alence o
ce ain condi ions by age g oup. Physical di icul ies a e mo e common among
olde age g oups (no shown he e). Among child en and young people wi h a
disabili y, he majo i y ha e di icul ies in lea ning, emembe ing o concen a ing,
o psychological, emo ional o men al heal h di icul ies (Figu e 1.2). Di icul ies in
lea ning, emembe ing o concen a ing make up a la ge p opo ion o hose aged
5 o 14 yea s (as a p opo ion o hose wi h a disabili y and also in e ms o absolu e
numbe s, no shown he e). Emo ional o men al heal h di icul ies accoun o a
2.5
11.9
19.1
24.8
26.5
26.9
52.7
010 20 30 40 50 60
Dea ness/hea ing impai men
Physical ac i i ies (walking, climbing e c.)
Pain/b ea hing/o he
Blindness/ ision impai men
Psychological/ emo ional/ men al heal h
In ellec ual disabili y
Lea ning/ emembe ing/ concen a ing
%
In oduc ion | 5
g ea e p opo ion o condi ions among hose aged 15 o 19 yea s, wi h a u he
inc ease in o he wen ies. These igu es canno indica e whe he he pa e ns
ela e o g ea e iden i ica ion o condi ions among young people o inc eased
le els o need among hese age g oups.
FIGURE 1.2 PROPORTION OF THOSE WITH SELECTED CONDITIONS AMONG THOSE WITH
A DISABILITY BY AGE, CENSUS 2022
Sou ce: Census 2022.
The Census s a is ical eleases cau ion agains looking a ends o e ime, because
o changes in he ques ion o ma . None heless, he igu es do poin o an
inc easing p e alence o disabili y o e ime among 9- and 13-yea -olds (Figu e
1.3).
2
Fu he mo e, he e is e idence a all h ee ime-poin s o inc easing
iden i ica ion o eme gence o need be ween 9 and 13 yea s o age.
2
This appea s o be a longe - e m end, wi h disabili y p e alence inc easing om 4.2 o 6.1 pe cen
among 5- o 9-yea -olds and 5.8 o 7.7 pe cen among 10- o 14-yea -olds be ween 2006 and 2011.
0
10
20
30
40
50
60
In ellec ual disabili y Lea ning/ emembe ing/concen a ing Psychological/emo ional
%
0-4 5-9 10-14 15-19 20-24 25-29
6 | T ends in disabili y p e alence among young people
FIGURE 1.3 CENSUS ESTIMATES OF PERCENTAGE OF 9- AND 13-YEAR-OLDS WITH A
DISABILITY, 2011–2022
Sou ce: Census 2011, 2016 and 2022.
A ailable adminis a i e da a in I eland gene ally ocus on hose in eceip o
se ices, a he han he b oade g oup wi h long-las ing condi ions. Unde he
2005 Disabili y Ac , an assessmen o need iden i ies a child’s heal h needs and he
se ices equi ed o mee hose needs. The p opo ion o hose who we e assessed
unde his s a u o y assessmen o need p ocess as ha ing an au ism diagnosis
inc eased om 29 pe cen o hose wi h an iden i iable condi ion in 2015 o 54
pe cen in 2022.3 Simila ly, au ism p e alence among school-lea e applican s o
disabili y day se ices inc eased om 35 pe cen in 2019 o 52 pe cen in 2023.
Be ween 2014 and 2021, he numbe o s uden s a ending special classes a
p ima y le el inc eased by 129 pe cen ( o 8,740) and by 205 pe cen ( o 3,178)
a second le el (Depa men o Educa ion, 2023; NCSE, 2024). Na ional Council o
Special Educa ion (NCSE) igu es indica e ha he mos common designa ion o
special classes is o ASD o ASD ea ly in e en ion. Heal h Resea ch Boa d (HRB)
da a o people engaging wi h disabili y se ices ( egis e ed on he Na ional Abili y
Suppo s Sys em) included 45,068 child en and young people in 2022 (3.5 pe cen
o all hose aged unde 18).4 O hese, 39 pe cen had au ism as a p ima y
disabili y, 24 pe cen had an in ellec ual disabili y and 6 pe cen had a physical
disabili y.
McConkey e al. (2019) highligh ed he challenges in iden i ying he p e alence o
in ellec ual disabili y and poin ed o much highe numbe s iden i ied by he Census
han by adminis a i e da a ( he Na ional In ellec ual Disabili y Da abase, NIDD).
In 2011, he Census iden i ied 1.8 imes mo e child en han we e egis e ed on he
3We a e e y g a e ul o Ei hne Fi zge ald, DCEDIY, o access o hese and o he igu es quo ed in his
sec ion.
4See h ps://www.h b.ie/da a-collec ions-e idence/disabili y-se ice-use-and-need/la es -da a/.
7.3 7.6
12.2
7.9 8.4
14.2
0
4
8
12
16
2011 2016 2022
%
9 yea s 13 yea s
In oduc ion | 7
NIDD, and 2.35 imes mo e in 2016. This e lec s he ac ha no all child en wi h
an in ellec ual disabili y equi e specialis se ices.
1.4 DISABILITY PREVALENCE USING GROWING UP IN IRELAND DATA
1.4.1 P e ious esea ch using GUI da a
To da e, wo s udies ha e used GUI da a o de i e es ima es o he p opo ion o
child en wi h disabili ies o addi ional needs. Bo h s udies indica ed es ima es
highe han hose gi en by he Census. Banks and McCoy (2011) used GUI da a o
es ima e he numbe o child en wi h a SEN, e lec ing he b oad de ini ion o SEN
used by he Educa ion o Pe sons wi h Special Educa ional Needs (ESPSEN) Ac
2004. Based on 9-yea -olds om GUI Coho ’98, his de ini ion included: hose
iden i ied as ha ing physical, speech, lea ning and emo ional/beha iou al
disabili ies by hei eache ; hose iden i ied by hei mo he as ha ing a lea ning
di icul y o communica ion o coo dina ion diso de , speech di icul ies o a
physical o men al heal h p oblem, illness o disabili y ha hampe ed hei daily
ac i i ies; and hose a ed as ha ing high le els o socio-emo ional di icul ies
(being in he op en pe cen on he SDQ o al di icul ies scale), as epo ed by
eache s. The s udy poin ed o an o e all p e alence o 25 pe cen , wi h highe
SEN le els among boys han gi ls.
5
Whelan e al. (2021) used GUI Coho ’08 da a on 5-yea -olds, basing es ima es on
eache epo s o limi a ions a ec ing he child a school. Thei es ima e o
p e alence was 8.8 pe cen compa ed o 4.5 pe cen o he 2016 Census.
Including speech di icul y o mild gene al lea ning di icul y inc eased he es ima e
o 15.5 pe cen . In pa icula , he GUI es ima es o in ellec ual disabili y, di icul y
wi h lea ning, emembe ing o concen a ing and psychological/emo ional
condi ions we e highe han es ima es based on Census da a.
1.4.2 New es ima es o changes in p e alence o e ime
This s udy uses GUI da a om Coho s ’98 and ’08 o de i e es ima es o changes
in he p e alence o LLCs and disabili ies among young people o e ime. Fieldwo k
o Coho ’98 a 13 yea s o age ook place on a ace- o- ace basis o e he pe iod
o Augus 2011 o Feb ua y 2012, wi h a esponse a e o 90 pe cen o he alid
sample (Tho n on e al., 2016). Re lec ing con inuing public heal h es ic ions a
he ime (July 2021 o June 2022), ieldwo k o Coho ’08 a 13 yea s o age was
conduc ed ia elephone, wi h he sel -comple e elemen (on sensi i e opics like
dep ession) adminis e ed ia an online pla o m hos ed by he Cen al S a is ics
O ice (CSO) (Mu ay e al., 2023). The esponse a e was 78 pe cen o he alid
sample (Mu ay e al., 2023). In bo h su ey wa es, a i ion was g ea e among
5
Using a sligh ly di e en classi ica ion on he same da a, Cosg o e e al. (2014) es ima ed he p opo ion
o 9-yea -olds wi h a SEN o be 28 pe cen .
8 | T ends in disabili y p e alence among young people
mo e socio-economically disad an aged g oups, so weigh ing is used o make he
samples ep esen a i e o he popula ion as a whole.
TABLE 1.1 MEASURES OF LONG-LASTING CONDITIONS, DISABILITY AND SPECIAL
EDUCATIONAL NEEDS OVER WAVES AND COHORTS
Coho ’98
Coho ’08
A age 9:
Long-las ing condi ion
Does he s udy child ha e any
ongoing ch onic physical o
men al heal h p oblem,
illness o disabili y?
Does he child ha e any
longs anding illness, condi ion
o disabili y? By longs anding
I mean any hing ha has
oubled him/he o e a
pe iod o ime o ha is likely
o a ec him/he o e a
pe iod o ime?
I yes, is he s udy child
hampe ed in his/he daily
ac i i ies by his p oblem,
illness o disabili y?
I yes, do any o hese
illnesses hampe he child in
his/he daily ac i i ies?
A age 13:
Long-las ing condi ion (open)
Does he child ha e
any ongoing ch onic
physical o men al
heal h p oblem,
illness o disabili y?
I yes, whe he hampe ed in
hei daily ac i i ies.
Long-las ing condi ion (lis )
Does he child ha e any o he
ollowing condi ions o
disabili ies?
Does he child ha e
any o he ollowing
long-las ing
condi ions o
di icul ies?
I yes, whe he hampe ed in
hei daily ac i i ies.
A age 9 only ( eache
epo ):
Special educa ional needs
Do any o he ollowing limi
he kind o amoun o ac i i y
he s udy child can do a
school?
Do any o he ollowing limi
he kind o amoun o ac i i y
he s udy child can do a
school?
Sou ce: GUI Coho s ’98 and ’08. Age 9 in e iews we e ca ied ou in 2007/2008 and 2017/2018 espec i ely. Age 13
in e iews we e ca ied ou in 2011/2012 and 2021/2022 espec i ely.
Table 1.1 ou lines he measu es used in bo h coho s o hose aged 9 and 13 yea s
o age, while Table 1.2 shows measu es o he ypes o condi ions. Two se s o
in o ma ion a e used o de i e he main measu es employed in he emainde o
he epo . Fi s ly, a age nine, whe he he child o young pe son has an ongoing
o long-s anding illness o disabili y is measu ed by answe s gi en by p ima y
ca egi e s (he ea e , e med mo he s) o he open ques ion on whe he he child
has such a condi ion. A age 13, mo he s in Coho ’98 we e asked a simila open
ques ion abou ongoing condi ions, bu we e also asked whe he he child had any
o a lis o condi ions o disabili ies. Mo he s in Coho ’08 we e only asked whe he
In oduc ion | 9
hei child had any o he lis o condi ions, and he lis was sligh ly di e en om
ha used o Coho ’98, e lec ing he e minology used in Census 2022. Secondly,
mo he s we e asked abou he ex en o which hei child was hampe ed in hei
day- o-day li es by ha condi ion.
These measu es we e used o dis inguish be ween he ollowing g oups:
1. ‘Non-hampe ed LLC’ – hose who ha e a long-las ing condi ion bu a e no
hampe ed by i .
2. ‘Disabili y’ – hose who ha e a long-las ing condi ion and a e hampe ed by i ,
a leas o some ex en .
Fo easons o compa abili y, he ‘lis ’ measu e is used o bo h coho s o cap u e
ha ing an LLC a age 13.
6
A measu e o ha ing a SEN, as epo ed by he p ima y eache , is also included in
his chap e o compa a i e pu poses. I is based on he child being limi ed in hei
ac i i ies a school because o one o a lis o condi ions. This measu e is only
a ailable a age 9 as eache s we e no su eyed o he 13 yea wa e.
The measu e o disabili y used in his s udy does no eplica e ha de i ed by
Banks and McCoy (2011) o wo easons. Fi s , he p ima y ocus o he s udy is on
13-yea -olds and he lack o eache epo s a his wa e means we canno
iangula e in o ma ion om pa en s and eache s. Second, we a e in e es ed in
looking a changes o e ime, so using a ela i e measu e o socio-emo ional
di icul ies ( op 10 pe cen o SDQ) would cons ain such a compa ison.
6
As no ed abo e, he disabili y ques ion (whe he he young pe son is hampe ed by hei condi ion) a age
13 o Coho ’98 is il e ed h ough esponses o he open ques ion. This makes he disabili y g oup a
smalle subg oup o hose wi h LLC.
10 | T ends in disabili y p e alence among young people
TABLE 1.2 MEASURES OF TYPES OF CONDITIONS OVER WAVES AND COHORTS
Coho ’98
Coho ’08
A age 9:
Long-las ing condi ion
ICD-10 codes – 14 ca ego ies
mainly amed as ‘diseases o
…’ wi h one ca ego y o
‘men al and beha iou al
diso de s’.
Coded in o 23 condi ions and
an ‘o he ’ ca ego y – mix u e
o ‘a p oblem wi h…’ and
named condi ions.
A age 13:
Long-las ing condi ion (open)
ICD-10 codes – 14 ca ego ies
mainly amed as ‘diseases
o …’ wi h one ca ego y o
‘men al and beha iou al
diso de s’.
Long-las ing condi ion (lis )
Lis o 8 condi ions and an
‘o he (please speci y)’
op ion.
Lis o eigh
di icul ies and an
‘any o he ’
ca ego y. Adap ed
e sion o Census
2022 wo ding and
di e s om Coho
’98.
Also asked, wha is he na u e
o his condi ion o di icul y?
ICD-10 codes.
A age 9 only ( eache
epo ):
Special educa ional needs
Fou condi ions and o he ;
uses e m ‘lea ning disabili y’.
Se en condi ions and o he ;
sepa a es ou in o speci ic,
gene al: mild and gene al:
mode a e/ se e e/ p o ound;
ASD.
Challenge ac oss coho s
Small numbe in many ca ego ies (o en oo small o epo );
‘men al/beha iou al’ ca ego y no well di e en ia ed.
Sou ce: GUI Coho s ’98 and ’08.
No e: ICD: In e na ional Classi ica ion o Diseases.
Table 1.2 indica es signi ican change in he de ini ions used o measu e ypes o
impai men s o condi ions be ween coho s and be ween su ey wa es, e lec ing
changes in awa eness and use o e minology o e ime. The In e na ional
Classi ica ion o Diseases (ICD) classi ica ion is used a age 13 in bo h coho s bu
he small numbe in many ca ego ies means ha we canno epo se e al o hese
g oups. Fu he mo e, he ‘men al/beha iou al’ ca ego y is no well di e en ia ed.
In oduc ion | 11
FIGURE 1.4 PREVALENCE OF LONG-LASTING CONDITIONS AT 9 AND 13 YEARS OF AGE,
DISTINGUISHING BETWEEN THOSE WHO ARE AND ARE NOT HAMPERED BY
THAT CONDITION, AS REPORTED BY MOTHERS
Sou ce: GUI Coho s ’98 and ’08
Figu e 1.4 shows he p e alence o ha ing an LLC a ages 9 and 13, dis inguishing
be ween hose who a e hampe ed by ha condi ion (disabili y) and hose who a e
no (non-hampe ed LLC). The igu es show a e y signi ican inc ease in epo ed
p e alence o any condi ion be ween coho s (o e a decade) – om 11 o 24 pe
cen a age 9 and om 21 o 36 pe cen a age 13. The e is also an inc ease in
p e alence as child en ge olde (by 10 pe cen age poin s o Coho ’98 and 11
pe cen age poin s o Coho ’08). This e lec s a g owing iden i ica ion o need
and/o eme ging condi ions. I should be no ed ha he aming o ques ions
makes a di e ence. A age 13 (in Coho ’98), 21 pe cen o mo he s epo ed ha
hei child has one o a lis o condi ions, bu when asked an open ques ion abou
long-s anding condi ions, he epo ed p e alence is lowe , a 11 pe cen .
The e is a ma ked inc ease o e ime in hose who ha e a disabili y ( ha is, a
condi ion by which hey a e hampe ed): om 4 pe cen o Coho ’98 o 13 pe
cen o Coho ’08 a age 9, and om 6 pe cen o Coho ’98 o 23 pe cen o
Coho ’08 a age 13. Disabili y inc eases ma kedly wi h age o Coho ’08 ( om
13 o 23 pe cen ) bu g ow h be ween 9 and 13 yea s is much mo e modes o
Coho ’98.
6.4 4.4
10.8
15.4
5.8
21.2
11 13.3
24.3
12.9
22.8
35.7
0
5
10
15
20
25
30
35
40
Non-hampe ed
LLC
Disabili y
(hampe ed by
LLC)
Any LLC Non-hampe ed
LLC
Disabili y
(hampe ed by
LLC)
Any LLC
A 9 A 13
%
Coho '98 Coho '08
12 | T ends in disabili y p e alence among young people
FIGURE 1.5 PREVALENCE OF SPECIAL EDUCATIONAL NEEDS AT 9 YEARS OF AGE, AS
REPORTED BY TEACHERS
Sou ce: GUI Coho s ’98 and ’08.
As discussed abo e, eache - epo ed SEN measu es a e only a ailable a age nine.
P e alence inc eases om 13 pe cen o Coho ’98 o 17 pe cen o Coho ’08
(Figu e 1.5). Inc eases a e e iden ac oss all o he ca ego ies lis ed, hough a e
mos ma ked o beha iou al di icul ies. The esul s show ha he p e alence o
disabili y o SEN depends on he de ini ion used as well as he in o man in ol ed:
jus unde hal (49 pe cen ) o hose epo ed o ha e a disabili y by hei mo he
a e epo ed o ha e a SEN by hei p ima y eache . This likely e lec s he
in e ac ion be ween indi idual need and he en i onmen , in keeping wi h he
social model o disabili y. In his way, a young pe son may be hampe ed in ela ion
o a pa icula domain, such as school engagemen bu no in ano he , o example,
pee ela ionships.
2.1
7.3
1.9 1.6
12.9
4.8
8.8
3.1 2.6
17.2
0
4
8
12
16
20
Beha iou al Lea ning disabili y Physical Speech/language To al
%
Coho '98 Coho '08
In oduc ion | 13
FIGURE 1.6 PROPORTION OF 13-YEAR-OLDS WITH A LONG-LASTING CONDITION THAT
HAVE BEEN DIAGNOSED WITH ONE OR MORE CONDITIONS BY COHORT
Sou ce: GUI Coho s ’98 and ’08.
As well as being asked abou he p esence o condi ions, mo he s we e asked
abou whe he hei child had ecei ed a diagnosis o ha condi ion. The
p opo ion o he o al coho who had ecei ed a leas one diagnosis inc eased
om 16 pe cen o Coho ’98 o 31 pe cen o Coho ’08 (Figu e 1.6). O e
ou - i hs o he non-hampe ed LLC g oup had ecei ed a diagnosis in bo h
coho s. In con as , he p opo ion o hose who had a disabili y wi h a diagnosis
inc eased o e ime, om 63 o 88 pe cen .
FIGURE 1.7 TYPES OF LONG-LASTING CONDITION (LARGEST GROUPS) AS PERCENTAGE
OF TOTAL POPULATION (WITH AND WITHOUT A LONG-LASTING
CONDITION)
Sou ce: GUI Coho s ’98 and ’08.
Figu e 1.7 e e s o he wo la ges g oups o LLC. The small sample size he e means
i is no possible o b eak his down in de ail be ween hose who a e hampe ed by
ha condi ion (i.e. hose wi h a disabili y) and hose who a e no . The igu es show
86
63.2
16.3
83.2 87.7
30.7
0
20
40
60
80
100
Non-hampe ed LLC Disabili y To al coho
%
Coho '98 Coho '08
1.3
3.8
1.4 3.3
4.6
10
17.4
4.8
0
4
8
12
16
20
Beha iou al Respi a o y Beha iou al Respi a o y
A 9 A 13
%
Coho '98 Coho '08
20 | T ends in disabili y p e alence among young people
FIGURE 2.2 PREDICTED PERCENTAGE WITH A DISABILITY BY GENDER AND COHORT
Sou ce: De i ed om models in Table 2.1 wi h in e ac ion e m included.
No e: The 95 pe cen con idence in e als do no o e lap o Coho ’98 bu do o Coho ’08.
The e is li le sys ema ic a ia ion in disabili y s a us by pa en al educa ion and his
ela ionship does no change o e ime, wi h disabili y p e alence inc easing o all
educa ion g oups (Figu e 2.3). Simila ly, g ow h in p e alence was e iden ac oss
all social class g oups (Figu e 2.4). While he e appea ed o be less ela i e inc ease
among he p o essional g oup, he o e lapping con idence in e als indica e his
di e ence is no s a is ically signi ican .
FIGURE 2.3 PREDICTED PERCENTAGE WITH A DISABILITY BY PARENTAL EDUCATION AND
COHORT
Sou ce: De i ed om models in Table 2.1 wi h in e ac ion e m included.
0
5
10
15
20
25
30
Coho '98 Coho '08
%
Male Female
0
5
10
15
20
25
30
Coho '98 Coho '08
%
Junio Ce . Lea ing Ce . Pos -seconda y Deg ee
T ends in he p o ile o young people wi h disabili ies | 21
FIGURE 2.4 PREDICTED PERCENTAGE WITH A DISABILITY BY SOCIAL CLASS AND COHORT
Sou ce: De i ed om models in Table 2.1 wi h in e ac ion e m included.
In sum, he e has been a g ow h in disabili y p e alence ac oss all social g oups in
e ms o pa en al educa ion and class, bu a g ea e inc ease in p e alence among
gi ls han boys. This has esul ed in he e being no signi ican gende ing o disabili y
a es among Coho ’08. While o e all le els o disabili y a e b oadly simila o
boys and gi ls in Coho ’08, signi ican di e ences a e e iden in he ypes o
di icul ies o condi ions epo ed. Boys a e signi ican ly mo e likely han gi ls o
ha e an in ellec ual o gene al lea ning disabili y, o expe ience di icul ies
lea ning, emembe ing o concen a ing, and, o some ex en , o ha e any o he
illness/disabili y (Figu e 2.5). They a e also mo e likely o ha e mul iple di icul ies
han gi ls. Gi ls a e sligh ly mo e likely o ha e a senso y impai men bu a e much
mo e likely han boys o ha e a psychological, emo ional o men al heal h
di icul y. Because o changes in he ype o condi ion cap u ed be ween coho s
(see Chap e 1), i is di icul o de e mine which condi ions ha e inc eased mo e
in gi ls o e ime. Howe e , he pa e ns sugges ha inc eased emo ional o
men al heal h di icul ies among gi ls may unde lie his gende shi (see Sec ion
2.3 o u he de ail on le els o socio-emo ional di icul ies and dep ession).
0
5
10
15
20
25
30
35
40
Coho '98 Coho '08
%
P o essional Manage ial O he non-manual Skilled manual Semi/unskilled Non-employed
22 | T ends in disabili y p e alence among young people
FIGURE 2.5 TYPE OF CONDITION AMONG THOSE WITH A DISABILITY (THAT IS,
HAMPERED BY THAT CONDITION) BY GENDER, COHORT ’08
Sou ce: GUI Coho ’08.
No e: Pe cen ages o al o mo e han 100 as mo e han one condi ion o di icul y can be epo ed.
2.3 HEALTH AND WELLBEING BY DISABILITY STATUS
This sec ion looks a he ex en o o e lap be ween disabili y s a us and h ee
measu es o heal h and wellbeing a age 13: physical heal h, as epo ed by he
young pe son’s mo he ; dep essi e symp oms, as epo ed by he young pe son;
and socio-emo ional di icul ies, as epo ed by he mo he . I iden i ica ion o
hose wi h an LLC o disabili y has inc eased o e ime (wi hou any shi in he
unde lying condi ions), hen we would expec ha he di e ences be ween hose
wi h an LLC/disabili y and o he s would educe be ween coho s.
Fo easons o s a is ical disclosu e, he measu e o physical heal h has been
ecoded in o wo g oups: e y heal hy, no p oblems; and a leas some p oblems.
8
Figu e 2.6 shows ha he p e alence o heal h p oblems declines be ween coho s,
om 39 o 28 pe cen . Fo bo h coho s, heal h p oblems a e mo e p e alen
among hose who ha e an LLC (bu a e no hampe ed) and, mo e ma kedly, hose
wi h a disabili y. Thus, he gap in heal h s a us inc eases be ween hose wi h a
disabili y and o he s o e ime. Howe e , i is also wo h no ing ha a e y
signi ican p opo ion o hose who a e hampe ed by a disabili y (37 pe cen o
Coho ’98 and 45 pe cen o Coho ’08) a e desc ibed as being ‘ e y heal hy, no
p oblems’.
8
This combines he ca ego ies ‘heal hy, bu a ew mino p oblems’, ‘some imes qui e ill’ and ‘almos
always unwell’. The la e ca ego ies become oo small o epo when b oken down by disabili y s a us.
20.8
33.2 40
52
29.5
38
24.9 31.4 26.9
37.1 37.8 33.2
0
20
40
60
Senso y impai men Physical
impai men
In ellec ual/gene al
lea ning disabili y
Lea ning/
emembe ing/
concen a ing
Psychological/
emo ional/ men al
heal h
Any o he
illness/disabili y
%
Male Female
T ends in he p o ile o young people wi h disabili ies | 23
FIGURE 2.6 PERCENTAGE HAVING AT LEAST SOME HEALTH PROBLEMS BY DISABILITY
STATUS AND COHORT AT AGE 13
Sou ce: GUI Coho s ’98 and ’08.
Fo bo h coho s, he Cen e o Epidemiological S udies-Dep ession (CES-D)
measu e o dep essi e symp oms was adminis e ed o 13-yea -olds on a sel -
comple e basis. The e is no signi ican di e ence in a e age sco e be ween
coho s, bu his obscu es impo an di e ences by gende : sco es inc eased o
gi ls o e ime bu dec eased o boys. Fo his eason, Figu e 2.7 b eaks down
a e age dep ession sco es by disabili y s a us, gende and coho . Fo males and
emales in bo h coho s, he highes a e age dep ession le els a e ound among
hose wi h a disabili y. Among gi ls, dep ession le els a e highe among he non-
hampe ed LLC g oup han among hose wi h nei he an LLC no a disabili y.
Howe e , his di e ence is less ma ked o boys, o whom he main dis inc ion is
be ween hose wi h a disabili y and all o he s. Dep ession sco es inc eased o e
ime o all g oups o gi ls bu his g ow h is e y ma ked o gi ls wi h a disabili y.
36.6
18.3
40.9
32.5
62.9
54.3
38.6
28.4
0
20
40
60
80
Coho '98 Coho '08
%
Nei he Non-hampe ed LLC Disabili y To al
24 | T ends in disabili y p e alence among young people
FIGURE 2.7 MEAN DEPRESSION SCORE (CES-D) BY GENDER, DISABILITY STATUS AND
COHORT
Sou ce: GUI Coho s ’98 and ’08.
FIGURE 2.8 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ SUBSCALES) BY
DISABILITY STATUS AND COHORT: BOYS
Sou ce: GUI Coho s ’98 and ’08.
Figu es 2.8 and 2.9 show he a e age le el o socio-emo ional di icul ies,
measu ed using he S eng hs and Di icul ies Ques ionnai e (SDQ), o boys and
gi ls espec i ely, b oken down by disabili y s a us.
9
Boys in he non-hampe ed LLC
g oup ha e highe le els o conduc , emo ional and hype ac i i y p oblems han
hose wi h nei he an LLC no a disabili y, while le els a e e en highe o hose
wi h a disabili y. The pa e n o change o e ime a ies be ween di e en ypes
9
The SDQ is a widely used measu e o socio-emo ional di icul ies in e na ionally. I includes i e subscales
– ou cap u ing di icul ies a ound conduc , hype ac i i y, emo ional and pee ela ions, and one
cap u ing a posi i e elemen o p osocial beha iou . The o al di icul ies sco e includes he ou subscales
cap u ing di icul ies.
5.0
6.7
4.0
7.1
5.2
7.2
4.2
8.2
6.6
7.7
5.5
10.5
0
4
8
12
Male Female Male Female
Coho '98 Coho '08
CES-D scale
Nei he Non-hampe ed LLC Disabili y
1.0 0.8
1.4 1.6
2.7 2.5
1.4 1.1
2.2 2.0
4.1
3.3
2.0 1.7
3.5 3.7
4.9 5.4
0
2
4
6
Coho '98 Coho '08 Coho '98 Coho '08 Coho '98 Coho '08
Conduc Emo ional Hype ac i i y
SDQ subscale sco e
Nei he Non-hampe ed LLC Disabili y
T ends in he p o ile o young people wi h disabili ies | 25
o socio-emo ional di icul ies. The epo ed le el o conduc di icul ies declines
be ween coho s o all g oups o boys, including hose wi h a disabili y. Fo
emo ional di icul ies, le els inc ease sligh ly o hose wi h a disabili y and o
hose wi hou an LLC/disabili y, bu decline sligh ly o hose in he non-hampe ed
LLC g oup. In con as , hype ac i i y le els inc ease ma kedly o hose wi h a
disabili y while hey decline o bo h he non-hampe ed LLC and he non-
LLC/disabili y g oups. As a esul , he gap in emo ional and hype ac i i y di icul ies
be ween boys wi h a disabili y and o he s inc eases o e ime, while hose wi h an
LLC bu who a e no hampe ed come o mo e closely esemble he non-
LLC/disabili y g oup.
FIGURE 2.9 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ SUBSCALES) BY
DISABILITY STATUS AND COHORT: GIRLS
Sou ce: GUI Coho s ’98 and ’08.
Fo gi ls, socio-emo ional di icul ies a e g ea e among hose wi h a disabili y bu
he di e ences be ween he non-hampe ed LLC and disabili y g oups a e ma ginal
o all h ee subscales o Coho ’98. Conduc di icul ies decline among he
‘nei he ’ and non-hampe ed LLC g oups, bu emain s able o hose wi h a
disabili y. Emo ional di icul ies inc ease e y ma kedly o gi ls wi h a disabili y,
while le els decline o hose in he non-hampe ed LLC g oup and inc ease sligh ly
o he ‘nei he ’ g oup. Hype ac i i y le els decline o he non-hampe ed LLC and
‘nei he ’ g oups bu inc ease e y sligh ly o hose wi h a disabili y. As o boys,
he gap be ween he non-hampe ed LLC g oup and hose wi hou an LLC/disabili y
seems o na ow o e ime, meaning a g ea e di e ence in di icul y le els
be ween he disabili y g oup and all o he s.
1.0 0.8
1.9 2.1 2.1 1.9
1.6
1.1
3.0
2.5
3.8
2.7
1.7 1.7
3.1
4.6
3.9 4.0
0
1
2
3
4
5
Coho '98 Coho '08 Coho '98 Coho '08 Coho '98 Coho '08
Conduc Emo ional Hype ac i i y
SDQ subscale sco e
Nei he Non-hampe ed LLC Disabili y
26 | T ends in disabili y p e alence among young people
FIGURE 2.10 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ TOTAL
DIFFICULTIES) BY DISABILITY STATUS AND COHORT: BOYS
Sou ce: GUI Coho s ’98 and ’08.
FIGURE 2.11 MEAN LEVEL OF SOCIO-EMOTIONAL DIFFICULTIES (SDQ TOTAL
DIFFICULTIES) BY DISABILITY STATUS AND COHORT: GIRLS
Sou ce: GUI Coho s ’98 and ’08.
These h ee subscales, along wi h a measu e o pee di icul ies, can be summed
o gi e an o e all measu e o o al socio-emo ional di icul ies (Figu es 2.10 and
2.11). Among bo h boys and gi ls, he e is a ma ked decline in di icul ies among
hose wi h an LLC bu who a e no hampe ed by i . Fo hose wi hou an
LLC/disabili y, di icul ies decline sligh ly o boys bu emain s able o gi ls.
Among hose wi h a disabili y, di icul ies inc ease o bo h gende s bu do so much
mo e ma kedly o gi ls.
6.1
9.3
13.2
5.9
7.9
13.4
0
4
8
12
16
Nei he Non-hampe ed LLC Disabili y
SDQ sco e
Coho '98 Coho '08
5.9
10.1 10.5
5.9
7.7
12.7
0
4
8
12
16
Nei he Non-hampe ed LLC Disabili y
SDQ sco e
Coho '98 Coho '08
T ends in he p o ile o young people wi h disabili ies | 27
FIGURE 2.12 PERCENTAGE WITH A ‘PROBLEMATIC’ OR ‘BORDERLINE’ SDQ SCORE (14 OR
MORE) BY GENDER, DISABILITY STATUS AND COHORT
Sou ce: GUI Coho s ’98 and ’08.
The analyses so a ha e looked a a e age SDQ sco es, bu i is possible o sepa a e
ou he g oup ha ha e ‘p oblema ic’ o ‘bo de line’ sco es (14 o mo e) o
dis inguish hose o whom socio-emo ional di icul ies a e likely o be mo e
consequen ial. High sco es a e mos common among hose wi h a disabili y and
lowes among hose wi hou an LLC/disabili y, wi h o e ou in en o hose wi h
a disabili y ha ing high sco es among Coho ’08 (Figu e 2.12). The pa e n is
sligh ly di e en o gi ls in Coho ’98, whe e p oblema ic SDQ le els we e
simila ly high among hose in he non-hampe ed LLC and he disabili y g oups. As
wi h a e age SDQ sco es, being in he high-sco e g oup becomes less p e alen
o e ime o he non-hampe ed LLC g oup, o bo h gi ls and boys. In con as , he
chances o being in he high-sco e g oup inc eases o bo h gi ls and boys wi h a
disabili y, wi h a e y la ge inc ease e iden o gi ls.
2.4 CONCLUSIONS
This chap e has looked a he p o ile o young people by disabili y s a us and he
ex en o o e lap be ween ha ing an LLC o disabili y and key dimensions o heal h
and wellbeing. The e has been a shi in he gende p o ile o hose who ha e an
LLC o disabili y, wi h his being mo e common among boys han gi ls in Coho
’98; a decade la e , o Coho ’08, no ma ked gende di e ences a e e iden .
While i is di icul o de e mine wha accoun s o his shi , he e idence on socio-
emo ional di icul ies sugges s ha he pa e n ela es o an inc ease in emo ional
di icul ies among gi ls. This end is consis en wi h he disp opo iona e inc ease
in socio-emo ional di icul ies p e iously ound among gi ls in se e al coun ies,
7.6 76.8 6.8
21.2
14.7
27.7
14.6
40.7
46.3
26.3
42.5
0
10
20
30
40
50
Coho '98 Coho '08 Coho '98 Coho '08
Boys Gi ls
%
Nei he Non-hampe ed LLC Disabili y
28 | T ends in disabili y p e alence among young people
including I eland (Daly, 2022; Nilsen e al., 2024; Po ebny e al., 2024; Dooley e
al., 2019).
10
The e has been a g ow h in disabili y p e alence among all social g oups o e he
decade s udied. Howe e , disabili y p e alence a ies by some amily backg ound
ac o s, wi h highe a es o disabili y ound among young people om lone-pa en
amilies and hose li ing in en ed accommoda ion. Lowe a es o disabili y o LLC
a e ound among hose om mig an -o igin amilies. In e na ional s udies ha e
highligh ed di e ences in he p e alence o disabili y among mig an -o igin
child en, depending on he coun y s udied (Mo inaga e al., 2021; Gao e al., 2022)
o by ype o condi ion wi hin he same coun y (Hansen e al., 2023). The e a e no
consis en explana ions o any such di e ences, which may be due o c oss-
cul u al di e ences in he iden i ica ion o disabili ies o o less inside knowledge
among mig an -o igin pa en s in how o access suppo s o diagnoses. E idence on
mig an -o igin adul s in I eland indica es ha hey a e less likely o access GP o
consul an se ices (Ba low e al., 2021), a pa e n ha may also in luence
diagnosis o condi ions o child en and young people.
Among Coho ’08, jus o e hal o hose wi h a disabili y and one- hi d o hose
in he non-hampe ed LLC g oup a e epo ed o ha e a leas some heal h
p oblems, a lowe le el han was he case o Coho ’98. In con as , high le els o
socio-emo ional di icul ies and, o gi ls, a e age dep ession sco es ha e
inc eased o e ime among hose wi h a disabili y. We had hypo hesised ha
inc eased le els o LLC/disabili y migh e lec g ea e iden i ica ion o condi ions
a he han an inc ease in unde lying need. I does appea ha bo h se s o ac o s
a e a play. Fo bo h boys and gi ls, he non-hampe ed LLC g oup seems o become
mo e like he non-LLC/disabili y g oup o e ime in e ms o men al heal h and
wellbeing, suppo ing he iden i ica ion hypo hesis. Howe e , he e is a g ea e
gap in men al heal h and wellbeing be ween hose wi h a disabili y and o he s han
p e iously. Fu he mo e, p oblema ic le els o socio-emo ional di icul ies become
mo e p e alen among hose wi h a disabili y, especially among gi ls, sugges ing
inc eased need among his g oup. The end in ype o socio-emo ional di icul ies
di e s by gende : gi ls wi h a disabili y a e mo e likely o ha e emo ional di icul ies
and dep essi e symp oms han p e iously, while boys wi h a disabili y a e mo e
likely o ha e hype ac i i y issues.
10
The e has been li le consensus on he ac o s po en ially d i ing his pa e n, wi h some s udies poin ing
o school- ela ed s ess (Högbe g e al., 2020) and o he s highligh ing he e ec s o social media (Kelly e
al., 2018; Haid , 2024).
Ou comes among young people wi h disabili ies | 29
CHAPTER 3
Ou comes among young people wi h disabili ies
3.1 INTRODUCTION
This chap e looks a selec ed ou comes among 13-yea -olds and he ex en o
which hese a y by disabili y s a us and be ween coho s. The ou comes ha e
been selec ed o cap u e key dimensions o expe iences, including he quali y o
ela ionships wi h pa en s and pee s, in ol emen in ou -o -school spo s and
a i udes o school. These ou comes we e also chosen on he basis o di e ences
ound in ea lie analyses be ween hose wi h a long-las ing condi ion (LLC) and
o he s (Smy h, 2024). As hese ea lie analyses ound no di e ences o hose wi h
an LLC in ela ion o sc een ime and in ol emen in cul u al ac i i ies, hese
ou comes a e no explo ed u he he e. As discussed in Chap e s 1 and 2, i
iden i ica ion o hose wi h an LLC o disabili y has inc eased o e ime (wi hou
any shi in he unde lying p e alence), hen we would expec ha he di e ences
be ween hose wi h an LLC/disabili y and o he s would educe be ween coho s.
3.2 RELATIONSHIPS WITH PARENTS
Table 3.1 p esen s he esul s o models looking a ou aspec s o he pa en –child
ela ionship (measu ed a age 13): mo he - epo ed con lic wi h he young
pe son, a he - epo ed con lic wi h he young pe son, whe he he 13-yea -old
epo s ge ing on e y well wi h hei mo he and how esponsi e hey ind hei
mo he . All o hese analyses con ol o o he ac o s ha po en ially in luence
ela ionship quali y, including gende , pa en al educa ion, social class, expe ience
o inancial s ain, mig an s a us, amily size and s uc u e, u ban/ u al loca ion,
li ing in en ed accommoda ion (p i a e o social) and school yea g oup.
Bo h mo he s and a he s epo signi ican ly g ea e le els o con lic i hei child
has an LLC o disabili y, wi h he highes le els ound among hose wi h a disabili y
(Table 3.1). We a e in e es ed no only in his o e all di e ence bu also in whe he
he scale o he e ec changed be ween coho s. In e ac ion e ms ( he in e ac ion
be ween coho and disabili y s a us) can be di icul o in e p e om a able.
The e o e, Figu es 3.1 and 3.2 p esen he p edic ed pa e ns based on he model
esul s o mo he –child and a he –child con lic , espec i ely. The igu es show a
decline in con lic le els be ween coho s o all h ee g oups. Howe e , he decline
is no s a is ically signi ican o young people wi h a disabili y (wi h o e lapping
con idence in e als a ound es ima es). Mo eo e , hose who ha e an LLC bu a e
no hampe ed by i mo e closely esemble hose wi hou an LLC/disabili y among
he younge coho .
36| T ends in disabili y p e alence among young people
FIGURE 3.7 PREDICTED PERCENTAGE OF YOUNG PEOPLE INVOLVED IN ORGANISED
SPORTS AT LEAST WEEKLY BY DISABILITY STATUS ACROSS COHORTS
Sou ce: De i ed om Model 2 in Table 3.4.
3.5 ATTITUDES TO SCHOOL
The 13-yea -olds we e asked how hey el abou school in gene al, wi h highe
alues indica ing mo e nega i e a i udes. A i udes o school a e mo e nega i e
among hose who ha e an LLC bu a e no hampe ed by i and e en mo e nega i e
among hose wi h a disabili y (Table 3.5). A i udes become mo e nega i e
be ween coho s (see he coho coe icien in Table 3.5). Figu e 3.8 shows wha
he p edic ed pa e ns look like o he g oup who like school e y much. A i udes
become less posi i e o all g oups, hough he dec ease is less o hose in he non-
hampe ed LLC g oup.
TABLE 3.5 ORDINAL LOGIT MODEL OF NEGATIVE ATTITUDES TO SCHOOL AT AGE 13
AND CHANGES OVER TIME (BASE GROUP: LIKE SCHOOL VERY MUCH)
(ODDS RATIOS)
Model 1
Model 2
Coho ’08
1.191**
1.192**
Disabili y s a us:
No hampe ed by LLC
Disabili y (hampe ed by LLC)
(Re . Nei he )
1.366***
2.058***
1.414**
1.891***
Disabili y*Coho ’08:
No hampe ed
Hampe ed
0.931
1.111
Pseudo R2
0.024
0.024
N
11,653
11,653
Sou ce: GUI Coho s ’98 and ’08.
No es: All o he models con ol o gende , pa en al educa ion, social class, expe ience o inancial s ain, mig an s a us,
amily size and s uc u e, u ban/ u al loca ion and li ing in en ed accommoda ion (p i a e o social). *** signi ican
a he p<.001 le el, ** p<.01, * p<.05, ± p<.10.
50
60
70
80
Coho '98 Coho '08
%
Nei he Non-hampe ed LLC Disabili y
Ou comes among young people wi h disabili ies | 37
FIGURE 3.8 PREDICTED PERCENTAGE OF YOUNG PEOPLE WHO LIKE SCHOOL VERY
MUCH BY DISABILITY STATUS ACROSS COHORTS
Sou ce: De i ed om Model 2 in Table 3.5.
3.6 CONCLUSIONS
This chap e has looked a key ou comes in he domains o ela ionships wi h
pa en s and pee s, in ol emen in ou -o -school ac i i ies and a i udes o school.
Clea di e ences a e e iden : young people wi h an LLC o disabili y ha e mo e
con lic ual ela ionships wi h hei pa en s, smalle pee ne wo ks, g ea e
di icul ies in e ac ing wi h pee s, less in ol emen in o ganised spo s and mo e
nega i e a i udes o school compa ed o hei pee s. The only dimension whe e
hese di e ences a e no as s ong ela es o a young pe son’s own pe spec i e on
hei ela ionship wi h hei mo he .
Compa ing he wo GUI coho s, some aspec s o young people’s li es ha e
become mo e posi i e o e he decade, wi h less con lic wi h pa en s and g ea e
spo s in ol emen , while o he aspec s ha e become somewha mo e nega i e,
wi h smalle ci cles o iends and sligh ly less posi i e a i udes o school (Smy h,
2024). Chap e s 1 and 2 ha e shown a signi ican shi in he size and p o ile o
hose wi h an LLC o disabili y be ween coho s. I his ela es o inc eased
iden i ica ion (wi hou any shi in he unde lying p e alence), hen we would
expec ha he di e ences be ween hose wi h an LLC/disabili y and o he s would
educe be ween coho s. Fo se e al o hese ou comes, a decline in di e ences
be ween g oups is appa en o he g oup who ha e an LLC bu a e no hampe ed
by i , wi h hese young people mo e closely esembling hose wi hou an LLC o
disabili y in he ecen coho . This may ela e o inc easing iden i ica ion o LLCs
ha do no impinge on day- o-day ac i i ies. Howe e , i should be no ed ha
o he ac o s, such as mo e inclusi e p ac ice in schools o g ea e socie al
awa eness o illness and disabili y, may ha e also made a di e ence. In con as ,
ac oss mos o he ou comes explo ed, he e emains a subs an ial and g owing
gap be ween hose wi h a disabili y and hose wi hou an LLC/disabili y, indica ing
no inc eased inclusion and/o g ea e se e i y o need among his g oup.
0
10
20
30
40
Coho '98 Coho '08
%
Nei he Non-hampe ed LLC Disabili y
38 | Conclusions and implica ions o policy
CHAPTER 4
Conclusions and implica ions o policy
4.1 INTRODUCTION
This epo d aws on analyses o he wo coho s o he G owing Up in I eland (GUI)
s udy o examine ends in he p e alence o disabili y among 13-yea -olds o e
he decade 2011/2012 o 2021/2022. The s udy was p omp ed by p e ious
analyses o GUI da a (Smy h, 2022, 2024), which showed a signi ican inc ease in
he numbe o 9- and 13-yea -olds epo ed o ha e a long-las ing condi ion (LLC)
o disabili y. The analyses dis inguish be ween young people who ha e an LLC and
a e hampe ed, a leas o some ex en , by ha condi ion ( he disabili y g oup),
hose who ha e an LLC bu a e no hampe ed by i ( he non-hampe ed LLC g oup)
and hose wi hou an LLC/disabili y. The epo looks a changes o e ime in he
size and composi ion o hese g oups, as well as he p esence o socio-emo ional
di icul ies and/o dep essi e symp oms among hese g oups. G owing numbe s o
hose wi h an LLC o disabili y may e lec g ea e iden i ica ion o condi ions o e
ime and/o g ea e p e alence. In o de o examine hese compe ing
explana ions, we look a he consequences o ha ing an LLC o disabili y o a
numbe o adolescen ou comes, including ela ionships wi h pa en s and pee s,
day- o-day ac i i ies and a i udes o school.
4.2 THE PREVALENCE OF LONG-LASTING CONDITIONS AND DISABILITY
The p e alence and p o ile o disabili y a e highly dependen on he de ini ions and
measu es used (Hage man and Hou ow, 2020; Panagi e al., 2022). Es ima ion is
made all he mo e challenging by changes in he measu es used in GUI be ween
coho s and be ween su ey wa es wi hin coho s. These changes e lec a b oade
shi in he unde s anding o disabili y in socie y, wi h a mo e away om a ocus
on diagnos ic ca ego ies owa ds a social model o disabili y ha emphasises
unc ioning in pa icula con ex s o en i onmen s (see, o example, Fo e , 2023).
Based on mo he epo s, he p opo ion o 13-yea -olds wi h an LLC (whe he o
no hey a e hampe ed by i ) has inc eased om 24 pe cen o Coho ’98 o 36
pe cen o Coho ’08. As well as being asked abou he p esence o condi ions,
mo he s we e asked abou whe he hei child had ecei ed a diagnosis o ha
condi ion. The p opo ion o he o al coho who had ecei ed a leas one
diagnosis inc eased om 16 pe cen o Coho ’98 o 31 pe cen o Coho ’08.
The g oup wi h a disabili y ( ha is, an LLC ha hampe s hei ac i i ies a leas o
some ex en ) g ew om 6 pe cen o Coho ’98 o 23 pe cen o Coho ’08. A
g ow h in he p e alence o disabili y is also e iden in Census igu es, hough
Census es ima es end o be lowe han hose based on GUI da a (see also Banks
and McCoy, 2011; Whelan e al., 2021).
T ends in disabili y p e alence among young people | 39
The e has been a g ow h in he p e alence o disabili y and LLCs among all social
g oups o e he pe iod 2011/2012 o 2021/2022. The e has been a shi in he
gende composi ion o hese g oups, wi h ha ing an LLC o disabili y being mo e
common among boys han gi ls in Coho ’98 bu no ma ked gende di e ences
e iden a decade la e . While i is di icul o de e mine wha accoun s o his shi
on he basis o a ailable da a, he e idence on socio-emo ional di icul ies sugges s
ha he pa e n ela es o an inc ease in emo ional di icul ies among gi ls. A
disp opo iona e inc ease in dep essi e symp oms and anxie y among gi ls has
been ound in ea lie I ish esea ch (Dooley e al., 2019), as well as in esea ch om
a numbe o o he Wes e n coun ies (Du beej e al., 2019; Nilsen e al., 2024).
Changes in he classi ica ion o ypes o condi ions, alongside small sample sizes
o se e al g oups, make i challenging o look a which pa icula condi ions a e
d i ing he o e all inc ease. Among hose wi h an LLC who a e no hampe ed by
he condi ion, he e is an inc ease in bo h espi a o y and beha iou al di icul ies,
he la ges g oups, o e ime. The inc ease is pa icula ly ma ked o beha iou al
di icul ies, inc easing om 1 o 17 pe cen be ween coho s a age 13. The
p opo ion wi h an emo ional/beha iou al disabili y ha hampe s hei ac i i ies
has inc eased om 1.1 pe cen o he o al coho in Coho ’98 o 13.5 pe cen
in Coho ’08. P incipals epo a co esponding inc ease in he p e alence o
emo ional and beha iou al di icul ies in hei school, wi h o e en pe cen o
p incipals now epo ing ha one-qua e o mo e o hei s uden s ha e such
di icul ies.
4.3 DISABILITY, HEALTH AND WELLBEING
Th ee aspec s o heal h and wellbeing we e explo ed: mo he epo s o he young
pe son’s gene al heal h; mo he epo s o socio-emo ional di icul ies (measu ed
using he S eng hs and Di icul ies Ques ionnai e (SDQ)); and young pe son
epo s o dep essi e symp oms. Fo bo h coho s, heal h p oblems a e mo e
p e alen among hose wi h an LLC and, mo e ma kedly, hose wi h a disabili y,
han among hose wi h nei he . Howe e , i is wo h no ing ha a ound ou in en
o hose who a e hampe ed by a disabili y a e desc ibed as being ‘ e y heal hy, no
p oblems’. P oblema ic le els o socio-emo ional di icul ies and, o gi ls, a e age
dep ession sco es a e ound o ha e inc eased o e ime among hose wi h a
disabili y, indica ing no diminu ion o need among he g oup. In con as , he non-
hampe ed LLC g oup seems o become mo e like he g oup wi h nei he an LLC o
disabili y o e ime in e ms o men al heal h and wellbeing, sugges ing ha he e
may be g ea e iden i ica ion o LLCs ha do no gene ally hampe he li es o
young people.
4.4 DISABILITY AND ADOLESCENT OUTCOMES
The s udy examines di e ences by disabili y s a us in ela ionships wi h pa en s
and pee s, in ol emen in o ganised spo s and a i udes o school. Clea
40 | Conclusions and implica ions o policy
di e ences in adolescen ou comes a e e iden : young people wi h an LLC o
disabili y ha e mo e con lic ual ela ionships wi h hei pa en s, smalle pee
ne wo ks, g ea e di icul ies in e ac ing wi h pee s, less in ol emen in o ganised
spo s and mo e nega i e a i udes o school compa ed o hei pee s. The only
ou come analysed whe e di e ences a e no as s ong ela es o a young pe son’s
own pe spec i e on hei ela ionship wi h hei mo he .
G ow h in he p e alence o LLCs o disabili ies may e lec wo p ocesses. The i s
is an inc eased iden i ica ion o condi ions as a esul o g ea e awa eness among
pa en s, doc o s, eache s and o he p ac i ione s. The second is a g ea e
p e alence o ce ain condi ions and/o highe le els o need. The s udy indings
poin o bo h se s o ac o s being a play. Inc eased iden i ica ion should mean
ha he g oup wi h an LLC o disabili y would become mo e he e ogeneous in
p o ile. This appea s o be he case o hose wi h an LLC bu who a e no hampe ed
by i . They come o mo e closely esemble he non-LLC/disabili y g oup o e ime
in ela ion o se e al ou comes, including socio-emo ional di icul ies. O cou se, i
may be he case ha o he ac o s, such as mo e inclusi e p ac ice in schools o
g ea e socie al awa eness o illness/disabili y, may ha e also helped o educe he
ex en o which young people a e hampe ed by hei condi ion. In con as , he e
emains a subs an ial and g owing gap be ween hose wi h a disabili y and hose
wi hou an LLC/disabili y, indica ing ha g owing p e alence e lec s he p esence
o condi ions ha impac on young people’s day- o-day li es.
4.5 IMPLICATIONS FOR POLICY
The s udy indings poin o a signi ican g ow h o e ime in he p opo ion o 13-
yea -olds epo ed o ha e an LLC o disabili y, wi h an inc ease e iden ac oss all
social g oups bu a g ea e inc ease o gi ls han boys. The mos commonly
epo ed di icul ies among hose wi h a disabili y now ela e o physical
impai men and di icul ies lea ning, emembe ing o concen a ing, condi ions
ha ha e di e en implica ions o he esou ces and suppo s equi ed o
enhance he inclusion o hese young people.
The e idence poin s o a g ea e iden i ica ion o long-las ing illnesses o
condi ions ha do no hampe young people’s day- o-day li es, wi h his g oup
coming o mo e closely esemble hei pee s wi hou an LLC/disabili y in e ms o
hei socio-emo ional wellbeing and men al heal h, ela ionships, ac i i ies and
school engagemen . In con as , he e a e clea le els o need, including inc easing
need in some domains, among young people wi h a disabili y in e ms o hei
socio-emo ional wellbeing as well as hei social and educa ional ou comes.
The s udy indings ha e implica ions o a ange o policy a eas, including disabili y,
heal h, educa ion, amily suppo and ec ea ion, and sugges he impo ance o a
joined-up app oach in p omo ing he ull inclusion o young people wi h a
disabili y. While he e has been a good deal o policy de elopmen in ela ion o
T ends in disabili y p e alence among young people | 41
inclusi e p ac ice, he indings poin o a numbe o a eas o u he de elopmen .
The e has been conside able policy de elopmen a ound Suppo ing Pa en s, he
new na ional model o pa en ing suppo se ices (DCEDIY, 2022). The indings
sugges he need o a ge suppo s owa ds amilies o child en and eenage s
wi h a disabili y, gi en he highe le els o pa en –child con lic e iden in hese
con ex s. Using da a on Coho ’98 a nine yea s o age, Banks e al. (2018)
highligh ed how a ending a mains eam school is no su icien o ensu e social
in eg a ion, wi h ewe iends among hose wi h a special educa ional need (SEN),
pa icula ly hose wi h emo ional–beha iou al p oblems. They sugges ed he need
o a g ea e emphasis on school-based e o s o p omo e in eg a ion. Fou een
yea s la e , young people wi h a disabili y s ill ha e ewe iends and a e mo e
likely o ha e di icul ies in e ac ing wi h pee s (as epo ed by hei mo he s).
Fu he esea ch could use ully explo e which g oups o young people expe ience
g ea e di icul ies and examine whe he hese p ocesses e lec social dis ance o
expe ience o mo e nega i e beha iou like bullying. School and class oom clima e
a e c ucial oo in p omo ing g ea e school engagemen among young people wi h
a disabili y (see McCoy and Banks, 2012), gi en he mo e nega i e a i udes o
school shown he e and less posi i e a i udes o co e school subjec s shown in
Smy h (2024). The indings on he low le els o in ol emen in spo among young
people wi h a disabili y sugges he impo ance o inclusi e p ac ice in ou -o -
school as well as in-school p o ision and he need o add ess a i udinal ba ie s
and lack o choice o sui able ac i i ies (see Spo I eland, 2022). This is all he mo e
impo an gi en he ole ha spo and physical exe cise can play in p omo ing
socio-emo ional wellbeing as well as physical heal h.
42 | Re e ences
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