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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

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
ad d ition al p ressu re of d ealin g with beh aviou r
p roblem s an d m obility d ep en d en cy.
Self-ca re
An y you n g ch ild n eed s h elp with self-care tasks su ch
as d ressin g, toiletin g, wash in g, feed in g an d m ovin g
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
d im in ish as th e ch ild grows old er; m ore th an 40% of
12 to 14 year old s n eed ed a lot of h elp with at least
fou r self-care tasks (see Figu re 1).
n=436 n=716
Mobility
Alm ost n on e of th e ch ild ren u n d er 5 years, an d less
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
sam p le, m ad e gettin g ou t even m ore d ifficu lt. Man y
p aren ts exp erien ced p roblem s u sin g p u blic tran sp ort,
esp ecially gettin g on an d off bu ses.
Employm ent and income
Alm ost n on e of th e p aren ts with m ain carin g
resp on sibility worked fu ll-tim e. Levels of
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

ad d ition al exp en d itu re. Lau n d ry, cloth in g, h eatin g,
bed d in g an d tran sp ort were th e m ost com m on extra
costs of care. If fu rth er fin an cial assistan ce was to be
p rovid ed , m ost p aren ts said th ey wou ld p refer it to be
as h igh weekly ben efits as op p osed to an an n u al
gran t.
Housi n g
Fou r ou t of ten p aren ts said th eir h om es were
u n su itable, often in a n u m ber of ways, for th e care of
th eir ch ild . A sim ilar figu re was obtain ed from a
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
d ifficu lt stairs, lack of sp ace or d own stairs facilities,
an d cold an d d am p .
Alm ost h alf th e fam ilies h ad m oved d u e to th e
n eed s of th eir ch ild . Un su itable h ou sin g was th e
m ost com m on reason for ch an gin g h om e. For m an y
fam ilies, h owever, m ovin g d id n ot solve th eir
h ou sin g p roblem s: 40% said th eir n ew h om e was still
u n su itable.
On e in five fam ilies m ad e ad ap tation s to th eir
h om es. Th ose wh o ap p lied for a d isabled facilities
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
fam ilies h ad waited lon ger th an a year.
Sharing t he load
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
gran d p aren ts, au n ts an d u n cles. Fou r ou t of ten
p aren ts said th ey received n o h elp from th eir
exten d ed fam ily. Paren ts from m in ority eth n ic
grou p s, an d th ose with old er ch ild ren , were less likely
to be h elp ed by th eir fam ilies.
Support groups
On ly on e in th ree p aren ts belon ged to a su p p ort
grou p . Th ose wh o were m em bers said th eir grou p
was a valu able sou rce of in form ation an d em otion al
su p p ort. A th ird of th e sam p le h ad ch osen n ot to
join a grou p . Alm ost 1 in 5 p aren ts d id n ot kn ow
wh at a su p p ort grou p was, wh ilst th e rem ain in g
resp on d en ts rep orted th ere was n o local grou p .
Using services
Of th e ran ge of p rofession als with wh om p aren ts h ad
con tact, th e m ost freq u en t was with th ose from th e
field s of h ealth or ed u cation . Less th an h alf th e
sam p le h ad seen a social worker in th e p ast twelve
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
Co-existence: do not interfere with each other 29
Confusion: relative roles unclear 5
Colonisation: professionals take over 3
Conflict: for example, over contrasting objectives 5
Factors wh ich paren ts said p rom oted positive
relation sh ips between th em selves an d profession als
in cluded h avin g a key worker, good com m un ication
skills, adequate levels of in form ation , respon sive services,
an d sen sitivity to th e paren t’s situation an d n eed s.
Problem s with services
Virtu ally all p aren ts exp erien ced at least on e p roblem
with th e services th ey u sed (Table 3). A lack of
em p ath y, h avin g to figh t for services, an d
exp erien cin g d elays - both in term s of a service bein g
p rovid ed , an d waitin g at ap p oin tm en ts - were
rep orted by h alf th e resp on d en ts. A th ird felt p oorly
in form ed abou t services, an d on e in five said th ey d id
n ot always u n d erstan d wh at was bein g said to th em .
Fin ally, a q u arter of p aren ts su rveyed said th ey h ad
exp erien ced a red u ction or with d rawal of services.
Table 3 Range and frequency of problem s
w it h services ( n=1,152)
Type of problem w it h service %
They do not understand what it is like
to look after my child 50
I have to fight for everything my child needs 47
Everything takes so long to be sorted out 46
I do not know what services are available to help me 32
I have to wait a long time at hospital 30
Services have been reduced or withdrawn 24
I do not always understand what they tell me 21
I do not know where to go for information 20
I have to wait a long time between
visits or appointments 19
I have difficulty making myself understood 17
Appointments are not organised so
that only one visit is needed 16
I see a different person every time 13
It is not possible to have appointments
when my partner can attend 16
They put pressure on me to carry out treatment
and therapies with my child by myself 11
I do not feel they are interested
in helping me or my child 11
I do not like so many professionals visiting my home 10
Needs
The children’s needs
W h ile less th an a q u arter of p aren ts (23%) said th eir
ch ild h ad n o u n m et n eed s, on e in two p aren ts felt
th eir ch ild h ad at least fou r u n m et n eed s.
Th e m ost com m on u n m et n eed s con cern ed
learn in g skills for fu tu re in d ep en d en ce an d m eetin g
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
th eir ch ild n eed ed to talk to som eon e abou t bein g
d isabled . Over a th ird id en tified u n m et n eed relatin g
to social or relation sh ip skills.
The pa rents’ needs
Nin e ou t of ten resp on d en ts rep orted at least on e
u n m et n eed , an d over h alf said th ey h ad five or m ore
u n m et n eed s.
Th ere was con siderable co n sen sus abou t th e m ain
areas of u n m et n eed . First, m ost p aren ts felt th ey h ad
in su fficien t fin an cial resources t o care for th eir ch ild .
Secon d , two out of th ree paren ts n eed ed h elp
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
to sh ow th em th e services th at were available.
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
ch ild’s developm en t, as well as th ose wh ich would
resolve or ease sleep an d beh aviou r problem s. Man y h ad
social an d em otion al n eeds. On e in th ree respon den ts
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
spen d with th eir oth er ch ild ren an d th eir partn er.
Vulnera ble fa m ilies
Fam ilies from m in ority eth n ic grou p s, an d very
severely im p aired ch ild ren an d th eir p aren ts, were
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
ch ild ren , as d id th eir p aren ts.
About t he st udy
Over 1,100 p aren ts carin g for a severely disabled ch ild
com pleted a question n aire about th eir n eed s an d
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
Fam ily Fun d (a govern m en t fun d ed bod y allocatin g
m od est gran ts to fam ilies of severely disabled ch ildren )
- 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
Published by the
Joseph Rowntree Foundation
The Homestead, 40 Water End
York YO3 6LP
Tel: 01904 629241 Fax: 01904 620072
ISSN 0958-3815
con sultation with p aren ts an d p rofession als. Th e
sam p le in clud ed paren ts carin g for ch ildren with a
ran ge of im pairm en ts. Min ority eth n ic grou p s were
well rep resen ted. W h ere ap prop riat e, th e fin d in gs from
th e survey were com p ared w ith research carried out on
sim ilar popu lation s in th e 1970s an d wit h data from
th e 1992 Gen eral Ho useh old Survey.
Furt her informat ion
For further information about this project, contact Bryony
Beresford at the Social Policy Research Unit, University of
York, Heslington, York YO1 5DD (Tel: 01904 433608).
A full report, Expert opinions: a national survey
of parents caring for a severely disabled child, is
published by The Policy Press in association with
Community Care magazine, as part of the Community
Care into Practice series (price £10.50).
The earlier work by Bryony Beresford is published as
Positively parents: caring for a severely disabled child
(1994). It is available from HMSO Publications priced
£12.50 (Tel: 0171 873 9090).
Relat ed Findings
Th e followin g Findings look at related issu es:
Social Care
14 Fam ily-based resp ite care (Mar 91)
53 Tren ds in app lication s to th e Fam ily Fun d (Jun 94)
54 Carin g for a severely d isabled ch ild (Au g 94)
Social Policy
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)
65 In com e m ain ten an ce an d livin g stan d ard s
(Nov 94)
78 Debt an d d isability (Ap r 95)
Housing
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
d isability (Feb 95)
155 Com m u n ity care an d h ou sin g for d isabled
p eop le (Sep 95)
For furth er in form atio n on th ese an d oth er Fin din gs,
con tact Sally Corrie on 01904 654328 (d irect
lin e/an swerph on e for p ublicat ion s qu eries on ly).
The Joseph Rowntree Foundation is an independent, non-political
body which funds programmes of research and innovative
development in the fields of housing, social care and social policy.
It supports projects of potential value to policy-makers, decision-
takers and practitioners. It publishes the findings rapidly and
widely so that they can inform current debate and practice.