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.
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 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:
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)
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.