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Beresford, B orcid.org/0000-0003-0716-2902 (1995) The needs of disabled children and
their families. Joseph Rowntree Foundation, York.

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 Social Care Research 76
Decem ber 1995

The ne e ds of disa ble d childre n

a nd the ir fa milie s
A na tiona l survey of over a thousa nd pa rents ha s ex plored the needs a nd
circumsta nces of fa milies ca ring for a severely disa bled child. The re se a rch ,
ca rried out by Bryony Bere sf o rd a t the Socia l Policy Resea rch Unit, University
of York , sought pa rents’ view s of their a nd their child’s needs a s w ell a s their
ex periences a s service users. Pa rents a lso re p o rted the ca re dema nds a nd
impa ct on living circumsta nces brought a bout by ha ving a disa bled child.
Compa risons w ith da ta collected tw enty yea rs a go indica te little im pro v e m e n t
in the circum sta nces in w hich fa m ilies a re ca ring for their severely disa bled
child. The re se a rchers found:

Severely disabled ch ildren o f all ages are h igh ly depen den t o n th eir paren ts
to m eet th eir basic care an d treatm en t n eeds. In additio n , o lder ch ildren are
likely to h ave so cial, co m m un icatio n an d beh avio ural pro blem s.

On e in tw o o f th e ch ildren un der 2 years w as depen den t o n at least o n e item

o f m edical equipm en t.

On average, h o useh o ld in co m es w ere lo w er am o n g th ese fam ilies co m pared

w ith fam ilies w ith n o n -disabled ch ildren . Nin e o ut o f ten lo n e paren ts, an d
o ver a th ird o f tw o paren t fam ilies, h ad n o in co m e o th er th an ben efits.

Over fo ur o ut o f ten fam ilies said th eir h o usin g w as un suitable fo r carin g fo r

a disabled ch ild; difficult stairs, lack o f space, an d co ld an d dam p w ere
co m m o n pro blem s.

On ly h alf th e sam ple described th eir relatio n sh ip w ith pro fessio n als as
po sitive an d suppo rtive.

Th e m o st co m m o n un m et n eeds o f th e ch ild related to learn in g skills,

m eetin g ph ysical n eeds, an d h avin g so m eo n e to discuss th eir disability w ith .

Th e m o st co m m o n un m et n eeds o f th e paren ts w ere fin an cial reso urces, h elp

in plan n in g th e ch ild’s future, h elp w ith care, an d kn o w ledge o f available
services.

Certain gro ups w ere particularly vuln erable to h igh levels o f un m et n eed an d
po o r livin g circum stan ces. Th ey in cluded fam ilies fro m m in o rity eth n ic
gro ups, lo n e paren t fam ilies an d th o se carin g fo r th e m o st severely im paired
ch ildren .

Disa bled
children
Back g r oun d
Table 1 Special care needs of younger
In an earlier stu d y th e research ers d escribed h ow
and older children
m ost p aren ts carin g for a d isabled ch ild actively seek
to m an age th eir d ay-to-d ay lives, an d th at a h ap p y
Special care t ask < 5 yrs > 5 yrs
an d lovin g relation sh ip between p aren t an d ch ild is
% %
vital to su ch a p ositive ap p roach (see Social Care
Findings 54). Th at research also sh owed h ow services Giving medicines by mouth 63 47
can both su p p ort an d h in d er th e ways fam ilies Physiotherapy 63 40
ch oose to cop e. Th e su rvey rep orted h ere Preparing food in a special way 48 28
com p lem en ts th at research by id en tifyin g areas of Turning child at night 35 25
u n m et n eed , an d p rovid in g in sigh t in to th e ways Special diet 25 18
services can better su p p ort d isabled ch ild ren an d Changing dressings 19 15
th eir fam ilies. Injecting drugs 8 6

n=436 n=716
Looking aft er a disabled child
Th e d em an d s p laced on p aren ts attem p tin g to m eet
th e ch ild ’s care n eed s are h igh , an d th ey face th e Mobility
ad d ition al p ressu re of d ealin g with beh aviou r Alm ost n on e of th e ch ild ren u n d er 5 years, an d less
p roblem s an d m obility d ep en d en cy. th an h alf of th e old er ch ild ren , were in d ep en d en tly
m obile. Lack of access to a car, rep orted by h alf th e
Self-ca re sam p le, m ad e gettin g ou t even m ore d ifficu lt. Man y
An y you n g ch ild n eed s h elp with self-care tasks su ch p aren ts exp erien ced p roblem s u sin g p u blic tran sp ort,
as d ressin g, toiletin g, wash in g, feed in g an d m ovin g esp ecially gettin g on an d off bu ses.
abou t. Man y p aren ts of severely d isabled ch ild ren
fin d th e d em an d s for h elp with self-care d o n ot Employm ent and income
d im in ish as th e ch ild grows old er; m ore th an 40% of Alm ost n on e of th e p aren ts with m ain carin g
12 to 14 year old s n eed ed a lot of h elp with at least resp on sibility worked fu ll-tim e. Levels of
fou r self-care tasks (see Figu re 1). em p loym en t for m oth ers in th e stu d y, wh o m ad e u p
96% of th e resp on d en ts, were m u ch lower th an
m oth ers with n on -d isabled ch ild ren as id en tified in
th e Gen eral Hou seh old Su rvey of 1992 (see Figu re 2).
In ad d ition , fewer m oth ers with d isabled ch ild ren
were workin g in 1994 th an in 1974. Am on g two
p aren t fam ilies, h owever, h alf th e p artn ers d id h ave
fu ll-tim e jobs.

Specia l ca re needs
Disabled ch ild ren h ave sp ecial care n eed s su ch as
p h ysioth erap y, sp ecial food req u irem en ts an d d ru g
regim es. It takes tim e to m eet m an y of th ese n eed s,
wh ich m ay arise several tim es a d ay. It was fou n d
th at, alth ou gh you n ger ch ild ren h ad m ost sp ecial
care n eed s, m an y p aren ts of old er ch ild ren still
carried ou t at least on e sp ecial care task (see Table 1).
Extrem e cases of sp ecial care were fou n d am on g It was fou n d th at n in e ou t of ten lon e p aren t
very you n g ch ild ren . Half th e p aren ts of ch ild ren fam ilies, an d a th ird of two p aren t fam ilies, h ad n o
u n d er 2 years of age said th eir ch ild was d ep en d en t in com e oth er th an ben efits. Fam ilies in th is su rvey
on at least on e item of m ed ical eq u ip m en t (su ch as h ad su bstan tially lower in com es th an th e gen eral
feed in g tu bes, p u m p s an d su ction eq u ip m en t). p op u lation (see Figu re 3).

Beha viour problem s Extra costs

Beh aviou r, com m u n ication an d social d ifficu lties p u t Fam ilies with a d isabled ch ild face extra d em an d s on
ad d ition al strain s on p aren ts. It was fou n d th at th ese th e h ou seh old p u rse. All th e p aren ts rep orted at least
p roblem s in crease, both in p revalen ce an d severity, as on e extra cost related to th e care of th eir ch ild . Most
ch ild ren grow old er. said th ere were five or m ore d ifferen t sou rces of
 m on th s. Two ou t of th ree p aren ts d id n ot h ave a key
worker. Virtu ally all con tact with p ractition ers
con cern ed th e ch ild ’s, as op p osed to th e p aren t’s,
n eed s.
Half th e p aren ts said th eir relation sh ip with
p rofession als was collaborative (see Table 2). Most of
th e rest of th e sam p le felt u n su p p orted .

Table 2 Relat ionships w it h professionals

( n =1 ,0 5 0 )
Type of relat ionship %

Collaborative: parent and professional

respect each other, recognise their respective
contribution and act as equals 51
ad d ition al exp en d itu re. Lau n d ry, cloth in g, h eatin g,
Co-existence: do not interfere with each other 29
bed d in g an d tran sp ort were th e m ost com m on extra Confusion: relative roles unclear 5
costs of care. If fu rth er fin an cial assistan ce was to be Colonisation: professionals take over 3
p rovid ed , m ost p aren ts said th ey wou ld p refer it to be Conflict: for example, over contrasting objectives 5
as h igh weekly ben efits as op p osed to an an n u al
gran t.
Factors wh ich paren ts said p rom oted positive
Housi n g relation sh ips between th em selves an d profession als
Fou r ou t of ten p aren ts said th eir h om es were in cluded h avin g a key worker, good com m un ication
u n su itable, often in a n u m ber of ways, for th e care of skills, adequate levels of in form ation , respon sive services,
th eir ch ild . A sim ilar figu re was obtain ed from a an d sen sitivity to th e paren t’s situation an d n eed s.
stu d y of fam ilies with d isabled ch ild ren con d u cted
twen ty years ago. Typ ical h ou sin g p roblem s were Problem s with services
d ifficu lt stairs, lack of sp ace or d own stairs facilities, Virtu ally all p aren ts exp erien ced at least on e p roblem
an d cold an d d am p . with th e services th ey u sed (Table 3). A lack of
Alm ost h alf th e fam ilies h ad m oved d u e to th e em p ath y, h avin g to figh t for services, an d
n eed s of th eir ch ild . Un su itable h ou sin g was th e exp erien cin g d elays - both in term s of a service bein g
m ost com m on reason for ch an gin g h om e. For m an y p rovid ed , an d waitin g at ap p oin tm en ts - were
fam ilies, h owever, m ovin g d id n ot solve th eir rep orted by h alf th e resp on d en ts. A th ird felt p oorly
h ou sin g p roblem s: 40% said th eir n ew h om e was still in form ed abou t services, an d on e in five said th ey d id
u n su itable. n ot always u n d erstan d wh at was bein g said to th em .
On e in five fam ilies m ad e ad ap tation s to th eir Fin ally, a q u arter of p aren ts su rveyed said th ey h ad
h om es. Th ose wh o ap p lied for a d isabled facilities exp erien ced a red u ction or with d rawal of services.
gran t typ ically h ad to wait m ore th an six m on th s to
h ear th e local au th ority’s d ecision . On e in th ree Table 3 Range and frequency of problem s
fam ilies h ad waited lon ger th an a year. w it h services ( n=1,152)

Sharing t he load Type of problem w it h service %

Th e su rvey fou n d low levels of su p p ort from
m em bers of th e exten d ed fam ily, su ch as They do not understand what it is like
gran d p aren ts, au n ts an d u n cles. Fou r ou t of ten to look after my child 50
I have to fight for everything my child needs 47
p aren ts said th ey received n o h elp from th eir
Everything takes so long to be sorted out 46
exten d ed fam ily. Paren ts from m in ority eth n ic
I do not know what services are available to help me 32
grou p s, an d th ose with old er ch ild ren , were less likely I have to wait a long time at hospital 30
to be h elp ed by th eir fam ilies. Services have been reduced or withdrawn 24
I do not always understand what they tell me 21
Support groups I do not know where to go for information 20
On ly on e in th ree p aren ts belon ged to a su p p ort I have to wait a long time between
grou p . Th ose wh o were m em bers said th eir grou p visits or appointments 19
was a valu able sou rce of in form ation an d em otion al I have difficulty making myself understood 17
su p p ort. A th ird of th e sam p le h ad ch osen n ot to Appointments are not organised so
that only one visit is needed 16
join a grou p . Alm ost 1 in 5 p aren ts d id n ot kn ow
I see a different person every time 13
wh at a su p p ort grou p was, wh ilst th e rem ain in g
It is not possible to have appointments
resp on d en ts rep orted th ere was n o local grou p . when my partner can attend 16
They put pressure on me to carry out treatment
Using services and therapies with my child by myself 11
Of th e ran ge of p rofession als with wh om p aren ts h ad I do not feel they are interested
con tact, th e m ost freq u en t was with th ose from th e in helping me or my child 11
field s of h ealth or ed u cation . Less th an h alf th e I do not like so many professionals visiting my home 10
sam p le h ad seen a social worker in th e p ast twelve
Needs con sultation with p aren ts an d p rofession als. Th e
The children’s needs sam p le in clud ed paren ts carin g for ch ildren with a
W h ile less th an a q u arter of p aren ts (23%) said th eir ran ge of im pairm en ts. Min ority eth n ic grou p s were
ch ild h ad n o u n m et n eed s, on e in two p aren ts felt well rep resen ted. W h ere ap prop riat e, th e fin d in gs from
th eir ch ild h ad at least fou r u n m et n eed s. th e survey were com p ared w ith research carried out on
Th e m ost com m on u n m et n eed s con cern ed sim ilar popu lation s in th e 1970s an d wit h data from
learn in g skills for fu tu re in d ep en d en ce an d m eetin g th e 1992 Gen eral Ho useh old Survey.
th e p h ysical an d learn in g n eed s cau sed by th e
im p airm en t. In ad d ition , fou r ou t of five p aren ts said Furt her informat ion
th eir ch ild n eed ed to talk to som eon e abou t bein g For further information about this project, contact Bryony
d isabled . Over a th ird id en tified u n m et n eed relatin g Beresford at the Social Policy Research Unit, University of
to social or relation sh ip skills. York, Heslington, York YO1 5DD (Tel: 01904 433608).
A full report, Expert opinions: a national survey
The pa rents’ needs of parents caring for a severely disabled child, is
Nin e ou t of ten resp on d en ts rep orted at least on e published by The Policy Press in association with
u n m et n eed , an d over h alf said th ey h ad five or m ore Community Care magazine, as part of the Community
u n m et n eed s. Care into Practice series (price £10.50).
Th ere was con siderable co n sen sus abou t th e m ain The earlier work by Bryony Beresford is published as
areas of u n m et n eed . First, m ost p aren ts felt th ey h ad Positively parents: caring for a severely disabled child
in su fficien t fin an cial resources t o care for th eir ch ild . (1994). It is available from HMSO Publications priced
Secon d , two out of th ree paren ts n eed ed h elp £12.50 (Tel: 0171 873 9090).
p lan n in g th eir ch ild ’s fu ture. Need s for h elp wit h t h e
care of th e ch ild , both sh ort-term breaks an d d u rin g
th e sch ool h olid ays, were id en tified by on e in two
p aren ts. Half th e sam p le said th ey n eeded som eon e
Relat ed Findings
to sh ow th em th e services th at were available.
Th e followin g Findings look at related issu es:
In ad dition , a th ird of p aren ts h ad un m et n eeds
related to learn in g skills wh ich would en courage th eir
Social Care
ch ild’s developm en t, as well as th ose wh ich would
14 Fam ily-based resp ite care (Mar 91)
resolve or ease sleep an d beh aviou r problem s. Man y h ad
53 Tren ds in app lication s to th e Fam ily Fun d (Jun 94)
social an d em otion al n eeds. On e in th ree respon den ts
54 Carin g for a severely d isabled ch ild (Au g 94)
said th ey n eeded to talk to som eon e about th eir ch ild .
Four out of ten said th ey sim p ly n eeded m ore tim e to
Social Policy
spen d with th eir oth er ch ild ren an d th eir partn er.
53 Strategies u sed by low in com e fam ilies with
ch ild ren to m ake en d s m eet (Ju l 94)
Vulnera ble fa m ilies
65 In com e m ain ten an ce an d livin g stan d ard s
Fam ilies from m in ority eth n ic grou p s, an d very
(Nov 94)
severely im p aired ch ild ren an d th eir p aren ts, were
78 Debt an d d isability (Ap r 95)
m ost vu ln erable to h igh levels of u n m et n eed . Old er
ch ild ren also h ad m ore u n m et n eed s th an you n ger
Housing
ch ild ren , as d id th eir p aren ts.
123 Ad ap tation s for d isability (Sep 94)
136 Hou sin g n eed s of p eop le with p h ysical
About t he st udy
d isability (Feb 95)
Over 1,100 p aren ts carin g for a severely disabled ch ild
155 Com m u n ity care an d h ou sin g for d isabled
com pleted a question n aire about th eir n eed s an d
p eop le (Sep 95)
circum stan ces. Th is represen ted a resp on se rate of over
80% from a sam ple drawn from th e database of th e
For furth er in form atio n on th ese an d oth er Fin din gs,
Fam ily Fun d (a govern m en t fun d ed bod y allocatin g
con tact Sally Corrie on 01904 654328 (d irect
m od est gran ts to fam ilies of severely disabled ch ildren )
lin e/an swerph on e for p ublicat ion s qu eries on ly).
- arguably, th e m ost represen tative database of fam ilies
with severely disabled ch ildren in th e Un ited
Kin gd om . Th e q uestion n aire was d eveloped in

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