PARENTS
WITH INTELLECTUAL DISABILITIES
Tim Booth (UK)
The Extent of Parenting
There are no accurate and reliable figures on the number of parents
with an intellectual disability. Several factors make it difficult
to count how many parents there are. These include fragmented
services, poor records, no common definitions, missing assessments
and the invisibility of many parents to official agencies.
For all these reasons, mothers and fathers with an intellectual
disability constitute a hidden population. In the UK, estimates
put the size of this population at between 60,000 to 250,000.
However, the evidence strongly suggests that the number of parents
known to practitioners is rising steadily.
Over two-thirds of health visitors, community nurses and Children
and Families social workers report having at least one case headed
by a parent or parents with an intellectual disability on their
current caseload.
Most information about parents with an intellectual disability
is derived from families who are known to the services. As such,
it may be based on a population whose needs or problems are greater
than those of others who are managing without formal support or
intervention.
Parenting Breakdown
Parents with an intellectual disability face a high risk of
losing their children. This fact holds in all countries with a
well-developed system of child protection services.
International research shows rates for the removal of children
varying from study to study and country to country in a range
between 30% to 80%.
In the UK, the evidence suggests that 40%-60% of children are
taken into alternative care. In other words, between 4 and 6 out
of every 10 children born into families headed by a mother and/or
father with an intellectual disability are removed from the care
of their parents, either temporarily or permanently, and looked
after elsewhere.
These high rates of child removal cannot be taken at face value
as evidence of widespread parenting failure. Parental behaviour
is not the only factor influencing what happens to the children
in these families. Parents with an intellectual disability also
meet with gaps in support and barriers to justice that load the
dice against them holding on to their children.
The Support Gap
The White Paper on Valuing People (Cm 5086) officially acknowledges
that support for parents with learning difficulties is 'patchy
and undeveloped'. Parenting is made harder for parents with learning
disabilities by well-documented shortcomings in the service system
that together serve to undermine their competence and heighten
their vulnerability. Key features of this support gap include:
Barriers to Justice
International research in
a variety of jurisdictions shows that parents with an intellectual
disability receive a raw deal in child protection and court proceedings
and supports the stark conclusion that 'unnecessary
harm is being done' to children and families. The
facts show that parents with an intellectual disability are:
-
disproportionately represented in child care proceedings;
-
less likely to have received support in their parenting -
or to have received inadequate support - before care proceedings
are initiated;
-
at risk of having their parental responsibility terminated
on the basis of evidence that would not hold up against non-disabled
parents;
-
likely to have their competence as parents judged against
stricter criteria or harsher standards than other parents;
-
more likely to have their children removed and their parental
rights terminated;
-
disadvantaged in the child protection and court process by
rules of evidence and procedure, their own limitations and
inadequacies in services;
-
less likely to receive support in correcting the conditions
leading to termination.
Supporting Parents
For most mothers and fathers with intellectual disabilities,
parenting is an uphill struggle made all the more difficult by
social and economic pressures that are known to undermine the
coping abilities even of non-disabled parents. Few are likely
to succeed without the right kind of support and too few receive
it.
Two key lessons about working with parents who have an intellectual
disability are underlined by both research and practice. First,
training works. Second, adequate social supports make it more
likely that parents will succeed.
Some Specialist Support Services for Parents
in the UK
The
Crowley House Families Project. Circles Network, The Dunstan
Centre, Pennywell Road, Easton, Bristol BS5 0TJ (Tel: 0117 37
37 010; Fax 0117 37 37 011; email shannon@circlesnetwork.org.uk
Sheffield Supported Parenting Project, Circles Network, c/o Sheffield
Women's Cultural Club, The Workstation, Paternoster Row, Sheffield
S1 2BX, (Tel: 0114 249 5505; Fax: 0114 249 5505; email: spp.womensclub@workstation.org.uk)
Parent Support Service, Warley Leisure and Enabling Services,
Rounds Green Methodist Church Buildings, Newbury Lane, Oldbury,
West Midlands B69 1HE (Tel/Fax: 0121 544 6611)
Family Support Project, Generate, 72 Summerstown Road, London
SW17 0BQ (Tel: 020 8879 6333)
Families Together, Lambeth MENCAP, 256 Brixton Hill, London SW2
1HF (Tel: Rose Sampson, Co-ordinator, 020 8674 0536)
Special Parenting Service, Hertfordshire Partnership Trusts Learning
Disability Service, Cherrytrees, Hitchin Hospital, Talbot Street,
Hitchin, Herts. SG5 2QU (Tel: Pasco Ray, Clinical Psychologist,
01438 314333x3765)
Special Parenting Service, 5 Walsingham Place, Truro, Cornwall
(Tel: Sue McGaw, 01872 356040)
Parenting Service, Barking and Dagenham MENCAP, 29 Woodward Road,
Dagenham, Essex RM9 4SJ (Tel/Fax: Joy Palmer, Co-ordinator, 020
8517 6515; email: tom_btmencap@hotmail.com)
Child and Special Parenting Service, Devon Partnership NHS Trust,
Franklyn House, Franklyn Drive, St. Thomas, Exeter EX2 9HS (Tel:
01392 208373; Fax: 01392 208386)
The Siren Project
(Parenting Group), The Elfrida Society, 34 Islington Park
Street, London N1 1PX ( Tel: Diane Simcoe, Manager, 020 7359 7443)
Parents & Co., Elfrida Rathbone Camden, 7 Dowdney Close,
Camden, London NW5 2BP (Tel: Kath Dawson, Family Development Worker,
020 7424 1618/1619/1620)
Greenwich Citizen Advocacy Parents Project, The Forum @ Trafalgar
Road, Greenwich, London SE10 9EQ (Tel: Emma Cohen, Advocacy Development
Worker, 020 8293 3720; email: emma@gcap.org.uk)
Further Reading
Booth, T., & Booth, W. (1994c). Parenting Under Pressure:
Mothers and Fathers with Learning Difficulties. Buckingham: Open
University Press. (ISBN 0 335 19194 0)
Booth, T., & Booth, W. (1998). Growing Up with Parents who
have Learning Difficulties, London: Routledge. (ISBN 0 415 16656
X)
Booth, W., & Booth, T. (1998). Advocacy for Parents with
Learning Difficulties: Developing Advocacy Support, Brighton:
Pavilion. (ISBN 1 900600 80 3)
Cotson, D., Friend, J., Hollins, S. and James, H. (2001). Implementing
the Framework for the Assessment of Children in Need and their
Families when the parent has a learning disability. In J. Horwath
(ed.), The child's world: Assessing children in need. London:
Jessica Kingsley Publishers. (ISBN 1 853029 57 2)
Goodinge, S. (2000). A jigsaw of services: Inspection of services
to support disabled adults in their parenting role, Social Services
Inspectorate, London: Department of Health.
Heighway, S. (1992). Helping Parents Parent: A practice guide
for supporting families headed by parents with cognitive limitations.
Supported Parenting Project. Madison: Wisconsin Council of Developmental
Disabilities. This practice guide shares techniques found to be
useful in providing effective support to families headed by parents
with an intellectual disability. The manual may be ordered using
a downloadable order form available on the WCDD (link to www.wcdd.org)
website.
Kidd Webster, S. (1993). Preserving the bond: A collection of
family stories. Madison: Wisconsin Council of Developmental Disabilities.
This booklet tells the stories of several families in which the
birth parent is no longer in a primary parenting role but has
been able - with help from a supportive system - to maintain some
kind of continuing relationship with his or her children. The
stories illustrate the benefits that can occur when there is the
creativity and will to find solutions that protect the child and
allow the bond between parent and child to remain unbroken. The
booklet may be ordered using a downloadable order form available
on the WCDD (link to www.wcdd.org) website.
Jewell, P. (1998). Out of the mainstream: A parenting group for
parents with an intellectual disability and their children. Melbourne,
Victoria: Disability Services Division, Victoria Government Department
of Human Services. A downloadable pdf version of this manual is
available at www.dhs.vic.gov.au/disability.
Jones, A. (1996). Parents with an intellectual disability: A
worker's manual. Melbourne, Victoria: Disability Services Division,
Victoria Government Department of Human Services. A downloadable
pdf version of this manual is available at www.dhs.vic.gov.au/disability.
Llewellyn, G., McConnell, D., Grace-Dunn, R., & Dibden, M.
(1999). Parents with intellectual disability and older children:
strategies for support workers. Melbourne, Victoria: Disability
Services Division, Victoria Government Department of Human Services.
A downloadable pdf version of this manual is available at www.dhs.vic.gov.au/disability
McConnell, D., Llewellyn, G., & Ferronato, L. (2000). Parents
with a disability and the NSW children's court. Sydney: University
of Sydney. A downloadable pdf version of this report is available
at www.ot.cchs.usyd.edu.au/projects/fssp/nsw_court.html
McGaw, S. (1995). I want to be a good parent ..., BILD, Kidderminster,
(Tel: 01562-850251). A series of 5 workbooks designed for use
with parents or prospective parents. The books are also available
on audio-tape.
McGaw, S. (2000). What works for parents with learning disabilities?
Barkingside: Barnardo's. (ISBN 0 902046 58 6)
Melberg Schwier, K. (1994). Couples with intellectual disabilities
talk about living and loving. Rockville: Woodbine House. (ISBN
0 933149 65 4)
Tymchuk, A. (1990). Parents with mental retardation: a national
strategy. Journal of Disability Policy Studies, 1(4), 44-56.
Tymchuk, A., & Feldman, M. (1991). Parents with mental retardation
and their children: review of research relevant to professional
practice. Canadian Psychology, 32(3), 486-496.
Other Useful Links and Resources
DISABLED
PARENTS NETWORK
A national network of disabled parents and their allies helping
one another and bringing about change.
DISABLED PARENTS NETWORK HELPLINE
Telephone 0870 241 0450 (24 hour answerphone with personal response
when possible Monday-Friday, including evenings)
email: information@disabledparentsnetwork.org.uk
DISABILITY,
PREGNANCY AND PARENTHOOD INTERNATIONAL
The DPPi Journal shares information and experience on all aspects
of parenting with a disability in the UK and overseas
DPPI
UK INFORMATION SERVICE
Telephone: 0800 018 4730
Textphone: 0800 018 9949;
Fax: 020 7263 6399
9.30-5.00pm Monday-Friday email: info@dppi.org.uk
DPPI's UK free helpline and information service welcomes calls
from disabled people who are already parents and those who wish
to become parents, health and social work professionals and students
and organisations concerned with disability and/or pregnancy and
parenthood.
DPPi's information officers aim to provide an individualised
response to each enquiry. DPPi maintains a large database of relevant
information including details of support groups, resources and
useful organisations. A number of information sheets are available
(in print, large print or on audio-tape) both on practical issues
such as bathing, nappy changing and choosing cots, and on resources
for parents with specific impairments.
THROUGH
THE LOOKING GLASS
US national resource centre for parents with disabilities
NATIONAL
CENTRE FOR DISABLED PARENTS
The Resource Centre houses a growing collection of resources relevant
to parenting where a person has a disability. Disabled people
or professional allies are welcome to visit and find out about
resources.
WWW.SUPPORTED-PARENTING.COM
A website providing a gateway to the Parents with Learning Difficulties
Research Programme at the University of Sheffield. The site offers
access to a wide array of publications, research findings and
evidence-based practice related to parenting by people with an
intellectual disability.
This article was first published on the site in 2002.
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