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The number and charact erist ics

of families wit h more t han one

disabled child

Analysis of the Family Fund Trust database, which r

e c o rds grant applications

to the government-funded Trust from families with severely disabled

c h i l d r en, has provided the first estimates of the number of families in the

United Kingdom who have more than one disabled child. The analysis has

also provided evidence that these families have additional disadvantages

c o m p a r ed with families with one disabled child. Secondary analysis of data

f rom a national survey of over 1,000 families with one or two sever

e l y

disabled children confirms and adds to that evidence.

Abo ut 17,000 fam ilies in th e UK h ave m o re th an o n e disabled ch ild.

Abo ut 6,500 fam ilies are carin g fo r two o r m o re severely disabled ch ildren .

Th is represen ts well o ver 10,000 severely disabled ch ildren livin g in a fam ily

wh ere th ere is an o th er severely disabled ch ild.

Fam ilies with m o re th an o n e disabled ch ild are:

- m o re likely to be sin gle paren ts;

- less likely to be in wo rk;

- m o re likely to be in sem i-skilled o r un skilled m an ual jo bs;

- m o re likely to be depen den t o n in co m e suppo rt;

- less likely to o wn th eir o wn h o m e.

Mo th ers are m o re likely to h ave a disability th em selves an d fath ers are m o re

likely n o t to be wo rkin g because o f illn ess o r disability.

Fam ilies applyin g to th e Fam ily Fun d Trust fro m Black m in o rity eth n ic

backgro un ds are less likely to h ave m o re th an o n e disabled ch ild th an wh ite

fam ilies o r Asian fam ilies.

Fam ilies with m o re th an o n e disabled ch ild h ave m o re extra co sts an d m o re

o f th em say th at th eir h o m e is in so m e way un suitable fo r a disabled ch ild

th an fam ilies with o n e disabled ch ild.

So m e co m bin atio n s o f differen t co n ditio n s are m o re prevalen t th an m igh t be

expected by ch an ce: asth m a in o n e ch ild was fo un d to be asso ciated with

skin co n ditio n s in an o th er; n o n -specific learn in g disability in o n e ch ild was

fo un d to be asso ciated with cerebral palsy in an o th er, with speech diso rders

in an o th er an d also with autism o r o th er ch allen gin g beh avio ur in an o th er.

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How many f am ilies?

Fam ily Fu n d Tru st figu res, based o n ap p licat io n s fo r gran t s, sh o w t h at ap p ro xim at ely 17,000 fam ilies in t h e Un it ed Kin gd o m h ave m o re t h an o n e d isabled ch ild ; ap p ro xim at ely 6,500 o f t h ese fam ilies are carin g fo r t wo o r m o re severely d isabled ch ild ren . Th is rep resen t s o ver 10,000 severely d isabled ch ild ren livin g in a fam ily wh ere t h ere is an o t h er severely d isabled ch ild .

Fam ily profile

Sin gle paren ts

Fam ilies wit h d isabled ch ild ren are kn o wn t o be m o re likely t o be sin gle p aren t s; figu res fro m t h e Fam ily Fu n d Tru st sh o w t h at t h ere is a h igh er p ro p o rt io n o f sin gle p aren t s, p art icu larly m o t h ers wh o are sep arat ed o r d ivo rced an d lo n e fat h ers, am o n g fam ilies wit h m o re t h an o n e d isabled ch ild (28 p er cen t co m p ared wit h 22 p er cen t in t h is sam p le). Th is su ggest s a great er st rain o n m arriage wh en p aren t s are carin g fo r t wo o r m o re d isabled ch ild ren .

Em plo y m en t

Figu res fro m t h e Fam ily Fu n d Tru st in d icat e t h at p aren t s o f d isabled ch ild ren , an d p art icu larly m o t h ers, are less likely t o be in wo rk t h an in fam ilies wit h o u t a d isabled ch ild (Table 1).

W h ere t h ere are t wo p aren t s in a h o u seh o ld wit h t wo o r m o re d isabled ch ild ren , fewer fat h ers wo rk t h an in fam ilies wit h o n e d isabled ch ild , su ggest in g a n egat ive im p act o n t h e fat h er’s wo rkin g p at t ern s. In ad d it io n , o f t h o se wh o d o wo rk, m o re are in sem i-skilled an d u n i-skilled jo bs.

Table 1 sh o ws t h at very few m o t h ers wit h o n e d isabled ch ild wo rk o u t sid e t h e h o m e - abo u t t wo p er cen t wo rk fu ll-t im e an d abo u t t en p er cen t p art -t im e. Th ese are well belo w t h e figu res fo r t h e gen eral p o p u lat io n o f fam ilies wit h ch ild ren . In ad d it io n , m o t h ers wit h m o re t h an o n e d isabled ch ild are sligh t ly less likely t o wo rk o u t sid e t h e h o m e.

Ben efits

Th e h igh er in cid en ce o f lo n e p aren t h o o d an d u n em p lo ym en t am o n g fam ilies wit h m o re t h an o n e d isabled ch ild lead s t o great er d ep en d en ce o n ben efit . Alm o st t wo -t h ird s o f fam ilies wit h m o re t h an o n e d isabled ch ild were d ep en d en t o n in co m e su p p o rt co m p ared wit h ju st o ver h alf o f t h o se wit h o n e d isabled ch ild .

Ten ure

Fam ilies wit h m o re t h an o n e d isabled ch ild were also less likely t o o wn t h eir o wn h o m e t h an fam ilies wit h o n e d isabled ch ild .

Co m p arat ive in fo rm at io n fro m t h e n at io n al su rvey o f 1,000 fam ilies ad d s t o t h is p ict u re. Mo t h ers o f t wo severely d isabled ch ild ren an d t h eir p art n ers were m o re likely t o be at h o m e carin g fo r fam ily fu ll-t im e. Th ey were m o re likely ll-t o be u n h ap p y will-t h t h eir em p lo ym en t sit u at io n wh et h er t h ey wo rked o r n o t . Th e an alysis su ggest s t h at m an y p aren t s feel t h ey h ave lit t le ch o ice abo u t wh et h er t o wo rk, an d t h at bo t h p aren t s are o ft en n eed ed at h o m e t o care fo r t h e ch ild ren .

Et hnicit y and geographical dist r ibut ion

Abo u t 10 p er cen t o f fam ilies wh o ap p ly t o t h e Fam ily Fu n d Tru st are fro m m in o rit y et h n ic gro u p s,

p red o m in an t ly Asian o r Black. Th e recen t ly in t ro d u ced Fam ily Fu n d Tru st et h n ic m o n it o rin g p ro gram m e in d icat es t h at a sm aller p ro p o rt io n o f Black ap p lican t s are carin g fo r m o re t h an o n e d isabled ch ild - 5 p er cen t , co m p ared wit h 12 p er cen t o f wh it e o r Asian ap p lican t s.

Th ere is a h igh er p ro p o rt io n o f fam ilies wit h m o re t h an o n e d isabled ch ild in t h e No rt h ern regio n (Cu m bria, No rt h u m berlan d , Du rh am , Clevelan d an d Tyn e & W ear) an d in t h e So u t h W est regio n (Avo n , Glo u cest ersh ire, So m erset , Devo n an d Co rn wall). Th ere is also a h igh er p ro p o rt io n o f fam ilies wit h m o re t h an o n e d isabled ch ild in No rt h ern Irelan d , wh ere t h ere ap p ears t o be a co rrelat io n wit h larger

FEBRUARY 1 9 9 8

Table 1 P e rcent age of parent s in w ork

Families with one Families with more General population of disabled child than one disabled child families with children1

M others full-time2 2 1 23

M others part-time2 10 6 37

Fathers with a partner

(working full- and part-time)2 63 51 86

Notes: 1 1994 General Household Survey

2 ‘All mothers’ includes single mothers and mothers with a partner. ‘Fathers with a partner’ excludes single fathers

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fam ily sizes. In t h is sam p le, 14 p er cen t o f fam ilies fro m No rt h ern Irelan d h ave fo u r o r m o re ch ild ren , co m p ared wit h 6 p er cen t acro ss t h e rest o f t h e UK. W it h in t h is sam p le t wo regio n s, W ales an d t h e East Mid lan d s, h ave a relat ively lo wer p revalen ce o f fam ilies wit h m o re t h an o n e d isabled ch ild .

Access t o support

It m ay be particu larly com plicated or difficult for fam ilies wit h t wo or m ore disabled ch ildren to access th e sup po rt th ey n eed. In th e n ation al su rvey of o ver 1,000 fam ilies, on e-fifth of p aren ts with two disabled ch ildren said th ey h ad n o-on e to look after th eir disabled ch ildren if th ey were un able to care fo r th eir ch ild due to an illn ess. Th ey were m o re likely to use respite care for em ergen cies rath er th an on a regular basis.

Fewer o f t h e fam ilies wit h t wo d isabled ch ild ren h ad relat ives livin g n earby t h an fam ilies wit h o n e d isabled ch ild an d t h ey gen erally received less h elp , em o t io n al o r p ract ical, fro m t h e ext en d ed fam ily.

In fam ilies wit h t wo d isabled ch ild ren , co m p ared wit h fam ilies wit h o n e d isabled ch ild , m o t h ers were m o re likely t o h ave a d isabilit y t h em selves. Am o n g Fam ily Fu n d Tru st ap p lican t s, fat h ers o f m o re t h an o n e d isabled ch ild were m o re likely t o be sick o r d isabled t h an fat h ers o f o n e d isabled ch ild .

S e rvices

Fam ilies wit h t wo d isabled ch ild ren wh o t o o k p art in t h e n at io n al su rvey gen erally fo u n d p ro fessio n als, p art icu larly t h e fam ily d o ct o r, less h elp fu l t h an d id fam ilies wit h o n e d isabled ch ild . Th ey were also m argin ally less likely t o h ave a key wo rker o r sin gle co n t act p o in t . Bo t h gro u p s rep o rt ed sim ilar

p ro blem s wit h services an d were eq u ally well, bu t n o t very, sat isfied wit h services.

Fam ily Fu n d Tru st ap p lican t s wit h m o re t h an o n e d isabled ch ild were sligh t ly m o re likely t o be kn o wn t o t h e lo cal au t h o rit y so cial services t h an fam ilies wit h o n ly o n e d isabled ch ild (74 p er cen t an d 70 p er cen t resp ect ively).

The sam e or dif f e rent diagnoses

Am o n g t h e fam ilies wh o ap p ly t o t h e Fam ily Fu n d Tru st wh o h ave m o re t h an o n e d isabled ch ild , h alf co n t ain siblin gs wit h t h e sam e d isablin g co n d it io n . Fo r ch ild ren wit h gen et ically d et erm in ed co n d it io n s su ch as cyst ic fibro sis, h aem o p h ilia o r m u scu lar d yst ro p h y, m o re t h an 80 p er cen t o f d isabled siblin gs h ave t h e sam e co n d it io n . W h ere t h ere is n o gen et ic co m p o n en t , su ch as wit h h ead in ju ry o r m en in git is, less t h an five p er cen t o f d isabled siblin gs h ave t h e sam e co n d it io n .

O t h er co n d it io n s wh ich sh o w so m e

p red isp o sit io n t o ru n in fam ilies are ast h m a an d n o n -sp ecific learn in g d isabilit y, n am ed syn d ro m es, m et abo lic co n d it io n s an d ch ro m o so m e d iso rd ers. Th ere is so m e su ggest io n o f a gen et ic co m p o n en t in sen so ry im p airm en t s, wit h t wo -t h ird s o f fam ilies wh ere t h ere is o n e blin d o r d eaf ch ild h avin g an o t h er wit h t h e sam e rat h er t h an a d ifferen t im p airm en t .

Th ere wo u ld n o t ap p ear t o be a sign ifican t fam ilial elem en t in cerebral p alsy o r ep ilep sy, in ch ild h o o d can cer o r leu kaem ia o r in m o st o f t h e n o n -gen et ically d et erm in ed co n d it io n s lead in g t o p h ysical lim it at io n su ch as sco lio sis, sp in a bifid a, Pert h es' d isease, St ill's d isease an d co n gen it al d islo cat io n o f t h e h ip . No r d o d iseases o f t h e m ajo r o rgan s, t h e h eart , t h e kid n eys, t h e lu n gs an d t h e d igest ive syst em sh o w a p red isp o sit io n t o ru n in fam ilies.

Am o n g fam ilies in t h e an alysis wh o h ave t wo ch ild ren wit h d ifferen t d iagn o ses, fo u r co m bin at io n s are m o re p revalen t t h an m igh t be exp ect ed by ch an ce. Ast h m a in o n e ch ild is asso ciat ed wit h skin co n d it io n s in an o t h er. No n -sp ecific learn in g d isabilit y in o n e ch ild is asso ciat ed wit h cerebral p alsy in an o t h er, wit h sp eech d iso rd ers in an o t h er an d also wit h au t ism o r o t h er ch allen gin g beh avio u r in an o t h er. Th ere m ay be a gen et ic co m p o n en t in t h ese co n d it io n s wh ich is n o t yet u n d erst o o d .

In t h e sm aller sam p le o f 1,000 fam ilies, wh ich co n t ain ed t h ree set s o f ad o p t ed ch ild ren , 29 o f 39 p airs o f ch ild ren h ad t h e sam e d iagn o sis. Th ere were fo u r p airs o f d eaf ch ild ren an d fo u r p airs o f ch ild ren wit h n o n -sp ecific learn in g d isabilit ies, su p p o rt in g t h e view t h at t h ere m ay be a gen et ic p red isp o sit io n t o t h ese co n d it io n s.

In conclusion: support ing f am ilies

Fam ilies wit h m o re t h an o n e d isabled ch ild are given sp ecial co n sid erat io n by t h e Fam ily Fu n d Tru st , wh ich t akes acco u n t o f t h e ext ra care an d st ress im p o sed by h avin g m o re t h an o n e d isabled ch ild . Ho wever, alt h o u gh t h ey m ay receive m o re in t o t al fro m d isabilit y ben efit s, t h e ben efit syst em d o es n o t allo w fo r t h e cu m u lat ive effect s o f care. Fo r exam p le, wh ere t wo ch ild ren in o n e fam ily bo t h fall o u t sid e t h e crit eria fo r t h e care co m p o n en t o f d isabilit y livin g allo wan ce, t h e fam ily will receive n o award , d esp it e t h e o verall bu rd en o f care.

Previo u s research h as sh o wn t h at fam ilies wit h a d isabled ch ild can be ext rem ely p o sit ive in t h eir everyd ay lives. Paren t s can be act ive an d creat ive in t h e ways t h ey m an age t h e st resses an d st rain s o f carin g an d t h eir sit u at io n is h elp ed wh en fo rm al services seek t o su p p o rt t h e fam ily in ways t h at

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n u rt u re a p o sit ive an d reward in g p aren t -ch ild relat io n sh ip . Ho w m u ch m o re im p o rt an t m u st it be fo r fam ilies wh o h ave m o re t h an o n e d isabled ch ild fo r services t o t ake acco u n t o f t h eir in d ivid u al circu m st an ces an d t h e so m et im es very d ifferin g n eed s o f each d isabled ch ild .

About t he st udy

Th e Fam ily Fu n d Tru st was est ablish ed in 1973 an d p ro vid es gran t s an d in fo rm at io n t o fam ilies wit h severely d isabled ch ild ren in t h e UK. (A d isabled ch ild m ay h ave a p h ysical im p airm en t , a sen so ry im p airm en t , a m en t al im p airm en t , o r co m p lex an d m u lt ip le im p airm en t s.) Fo r t h is st u d y, t h eir reco rd s o f o ver 100,000 fam ilies wit h o n e o r m o re d isabled ch ild u n d er t h e age o f 19 were an alysed . Mo re t h an 10,000 o f t h e fam ilies, abo u t eleven in every h u n d red , h ad t wo o r m o re ch ild ren wit h a d isabilit y. Mat erial fro m a n at io n al su rvey o f o ver 1,000 fam ilies wit h o n e o r t wo severely d isabled ch ild ren was u sed t o p ro vid e a bro ad er p ict u re. Th is su rvey in clu d ed 39 fam ilies wit h t wo severely d isabled ch ild ren .

Fo r fu rt h er in fo rm at io n abo u t t h is wo rk, o r abo u t u sin g t h e Fam ily Fu n d Tru st d at abase as a research reso u rce, co n t act Do t Lawt o n , Research Fello w, So cial Po licy Research Un it , Un iversit y o f Yo rk, Heslin gt o n , Yo rk YO 1 SDD (t el: 01904 433608; fax: 01904 433618; m in ico m : 01904 432626; e-m ail DL1 @yo rk.ac.u k).

A t wo -year p ro gram m e o f q u alit at ive research wh ich will m o re fu lly in vest igat e t h e circu m st an ces an d n eed s o f fam ilies wit h m o re t h an o n e d isabled ch ild is n o w in p ro gress. Fo r fu rt h er in fo rm at io n co n t act Ro sem ary To zer, Research Fello w, at t h e abo ve ad d ress.

Published by the

Joseph Rowntree Foundation

The Homestead, 40 Water End, York YO3 6LP Tel: 01904 629241 Fax: 01904 620072 http:/ / www.jrf.org.uk ISSN0958 -3084

The full report, Complex numbers: Families with

more than one disabled child by Dot Lawton, will be

published later in the spring by the Social Policy Research Unit as part of its Social Policy Report series. It can be ordered from Social Policy Research Unit, University of York, Heslington, York YO1 5DD, Tel: 01904 433608 (ISBN 1 871713 92 7, price £5.00 including postage and packing).

The following Findings look at related issues:

The needs of disabled children and their families, Dec 95 (SC76)

Trends in applications to the Family Fund, Jun 94 (SC53)

Full details of all JRF Findings and other publications can be found on our website: http:/ / www.jrf.org.uk. If you do not have access to the Internet or have any further queries on publications, contact our

Publications Office on 01904 615905 (direct line/ answerphone for publications queries only).

How t o get f urt her inf orm a t i o n

The Joseph Rowntree Foundation is an independent, non-political body which has supported this project as part of its programme of research and innovative development projects, which it hopes will be of value to policy-makers and practitioners. The findings presented here, however, are those of the authors

and not necessarily those of the Foundation.

218

FEBRUA RY 1 9 9 8

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Figure

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