The topic of parenting with an intellectual disability has received much attention in the research literature (Lightfoot & Slayter, 2014). Parents with intellectual disabilities have been noted to have specific risk factors for child maltreatment (Emerson & Brigham, 2013, Emerson & Brigham, 2014). Also, parents with intellectual disabilities are thought to be more likely to be involved in child maltreatment cases (Llewellyn & Hindmarsh, 2015). A number of parenting-related interventions have been reported upon in the literature vis-à-vis their application to parents with intellectual disabilities (Llewellyn, McConnell, Russo, Mayes & Honey, 2002). Commentary on the need for parenting supports to be included as life tasks on individual service plans have also been noted as many conversations on this topic are negative, and not strength-based (Lightfoot & LaLiberte, 2011). This post highlights existing knowledge about parents with disabilities involved in the child welfare system, and presents best-practices for work in support of this population of people with disabilities.
Much is known about risk factors for child maltreatment (Gilbert, Widom, Browne, Fergusson, Webb & Janson, 2009; Algood, Hong, Gourdine & Williams, 2011). Generally, risk factors are categorized into three groups (Stith, Liu, Davies, Boykin, Alder, Harris, Som, McPherson & Dees, 2009). First, parental characteristics (separate from the child) are considered. Second, the characteristics of the child are considered. Third, the parent-child relationship is considered. As Lightfoot and Slayter (2014) discuss, “while parental disability is often viewed as a risk factor for child maltreatment, and many state child protection laws direct child protection agencies to view parental disability as a risk for maltreatment (Lightfoot, LaLiberte & Hill, 2010), there has been little research into the correlation between parental disability and child maltreatment.” While it has been suggested that parents who have disabilities may be more likely to have child maltreatment risk factors– it has also been suggested that disability itself may not be the primary risk factor (Lightfoot & Slayter, 2014; McConnell, Feldman, Aunos & Prasad, 2010).
Four specific risk factors that are commonly associated with child maltreatment are poverty, behavioral health challenges, domestic violence and level of social supports. First, one of the primary (and best studied) risk factors for child maltreatment is poverty – a risk factor that is much more common in populations with disabilities (Batavia & Beaulaurier, 2001; Parish, Rose, Dababnah, Yoo & Cassiman, 2012) Second, behavioral health concerns are also primary risk factors for child maltreatment – concerns that may be more prevalent in populations with disabilities. Substance abuse, for example, is a noted problem in populations with disabilities (Moore, Greer & Li, 1994). People with intellectual disabilities are noted to have disparities in accessing treatment for such conditions in particular (Slayter, 2016; Slayter, 2010). Third, intimate partner violence is also a risk factor for child maltreatment and is a noted high prevalence problem for women with disabilities (Nosek, Foley, Clubb, Hughes & Howland, 2001; Slayter, 2009; Young, Nosek, Howland, Chanpong & Rintala, 1997, Brownridge 2006). Fourth, experiencing low levels of social support and/or social isolation can be a risk factor for child maltreatment. In the literature, this is a major concern held by clinicians working with parents with intellectual disabilities (Collings & Llewellyn, 2012; McConnell, Dalziel & Llewellyn, 2008; McGaw, Ball & Clark, 2002). One study has demonstrated that access to social supports can predict parenting practices as well as child well-being (Wade, Llewellyn, & Matthews, 2008).
Involvement of parents with intellectual disabilities in the child protection system
A recent Canadian study drew on a national data set to determine that 10.1% of all child maltreatment cases opened for investigation (vs. substantiated cases) involved parents with cognitive disabilities (McConnell, Feldman, Aunos & Prasad, 2011). In a case record review of child protection cases in four courts in Northern England, one in six cases involved at least one parent with an intellectual disability (Booth, Booth & McConnell, 2005a). In a two-country study of Australia and England, disproportionate representation was found for the involvement of parents with intellectual disabilities in child protection proceedings in court (Booth, Booth & McConnell, 2005b).
There are a limited number of studies that provide information about the experiences of parents with intellectual disabilities in the child protection system. This section details those findings in the order of a child protection case. In one Canadian national study, parents with intellectual disabilities who were involved in child maltreatment investigation were most likely to have neglect as the maltreatment type they were charged with (McConnell, Feldman, Aunos & Prasad, 2011). Evidence that parents with intellectual disabilities experience discrimination during both the investigation of potential child maltreatment and in child protection proceedings exists (Llewellyn, McConnell & Ferronato, 2003; Swain & Cameron, 2003; Cleaver & Nicholson, 2007)
Three studies about parents with intellectual disabilities suggest that once involved in the child protection system, on average 40% of the children of parents with intellectual disability were no longer living with their biological parents (Aunos, Goupil & Feldman, 2004; Booth & Booth, 2004a; Booth & Booth, 2004b; Llewellyn and Hindmarsh, 2015). More specifically, one English study explored the relationship between parental intellectual disability and the placement locations of the subject children in child maltreatment cases, finding that out-of-home care (i.e. not with extended family or in foster homes) was more likely. This study also examined the outcomes of the children of parents with intellectual disabilities and found that they were more likely to be placed for adoption (41.7 %) as compared to those whose parents did not have an intellectual disability (28.9 %) (Booth, Booth & McConnell, 2005a). Parental disability is also considered grounds for the termination of a parent’s rights to their child in some states (Lightfoot, Hill & LaLiberte, 2010).
Approaches to the support of parents with intellectual disabilities in the child welfare system:
The following suggestions are excerpted from The Arc, an advocacy organization for people with disabilities. The Arc’s original guidance on this matter is located here. The Arc states that “McConnell, Llewellyn & Bye (1997) surveyed service providers and identified four principles associated with effective services to parents with I/DD.”
- Services need to be responsive to the parents’ individual needs and focus on the whole family to ensure that interests of both parents and children are served.
- Services must include long-term, ongoing supports because the needs of children change and parenting skills must change as children mature.
- Services must consider the special learning needs of the parent. Learning must occur in the home, be repetitive, use demonstration and use resources that require little or no reading.
- Services must assist parents in becoming part of their community.
The Arc suggests that “examples of supports that help parents provide appropriate care and stimulation to their children include:”
- In-home visits to teach parenting skills and to assess parenting competency
- Parent training adapted for parents with intellectual disability
- Help with shopping and money management
- Service coordination
- Health care, learning to deal with doctors
- Child care, early intervention services
- Mental health counseling
- Counseling for substance abuse and other addictions
- Basic academic education for parents
- Transportation for families
- Play groups for children and parents
- Crisis intervention services
The Arc also suggests that parents with intellectual disabilities “may need varying kinds and levels of support at different times in their child’s life. Grandparents, aunts and uncles, friends and other family members often provide a lot of the help and support. Early intervention and/or Head Start can link families of young children to community and natural supports. However, the family may not even qualify for case management services, which means someone needs to be creative in helping the family find positive environments and help for the child. There is a great need for community service agencies to create and provide individualized services based on each family’s needs.”
In discussing how these services can be provided, The Arc states that “several service approaches have been shown to be effective individually and in combination in supporting parents and teaching parenting skills. These include home visiting programs, parenting groups, center-based programs and shared parenting models described below (Anderson & Lakin, 1998).”
Further, they tell us that “in-home programs provide an opportunity to model and teach parenting skills in the setting where parents will use them. This makes the skill easier for the parents to learn. The service providers can provide appropriate supports focusing on nutrition, cleanliness, safety issues and other issues related to the home. Parenting groups can instruct families meeting together on such topics as discipline techniques, child development, health and safety issues and decision-making skills. Studies show that parents consistently gain skills in this type of instruction. They are most successful when the class is followed by home visiting. This allows parents to practice in the home what they have learned in class under the support and observation of their instructor. Center-based programs provide a variety of services to parents and children at a program site. They can provide services to the parent and the child jointly and separately at the same site. They are most effective when supplemented with in-home training. They typically offer a variety of services and instruction such as parenting skills, cooking, financial management, etc. Shared parenting provides full-time support when the parent and child live in foster care together. The foster provider acts as a “co-parent” to ensure the needs of children are met.”
For additional resources on supporting parents with intellectual disabilities, please look at these links:
Aunos, M., Goupil, G. & Feldman, M. (2004). Mothers with intellectual disabilities who do or do not have custody of their children. Journal of Developmental Disabilities. 10, 65–79.
Booth, T. & Booth, W. (2004a) Parents with learning difficulties, child protection and the courts: A report to the Nuttfield Foundation. Sheffield: The University of Sheffield; 2004.
Booth, T. & Booth, W. (2004b) Findings from a court study of care proceedings involving parents with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. 1,179–81. doi: 10.1111/j.1741-1130.2004.04032.x.
Booth, W., & Booth, T. (1996). Supported parenting for people with learning difficulties: Lessons from Wisconsin. Representing Children, 9, 99–107.
Booth, T., Booth, W., & McConnell, D. (2005a). The prevalence and outcomes of care proceedings involving parents with learning difficulties in the family courts. Journal of Applied Research in Intellectual Disabilities. 18, 7–17. doi: 10.1111/j.1468-3148.2004.00204.x.
Booth, T., Booth, W., & McConnell, D. (2005b) Care proceedings and parents with learning difficulties: comparative prevalence and outcomes in an English and Australian court sample. Child and Family Social Work. 10, 353–60. doi: 10.1111/j.1365-2206.2005.00378.x.
Collings, S., & Llewellyn, G. (2012). Children of parents with intellectual disability: Facing poor outcomes or faring okay? Journal of Intellectual and Developmental Disabilities. 37:65–82. doi: 10.3109/13668250.2011.648610.
Dakil, S., Sakai, C., Hua, L., Flores, G. (2011). Recidivism in the child protection system: Identifying children at greatest risk of re-abuse among those remaining in the home. Archives of Pediatric Adolescent Medicine. 165(11), 1006-1012.
Emerson, E & Brigham, P. (2013). Health behaviours and mental health status of parents with intellectual disabilities: cross sectional study. Public Health. 2013;127(1),111–6. doi: 10.1016/j.puhe.2013.10.001.
Emerson, E. & Brigham, P. (2014). The developmental health of children of parents with intellectual disabilities: Cross sectional study. Research in Developmental Disabilities. 35, 917–21. doi: 10.1016/j.ridd.2014.01.006.
Feldman, M. A. (2010). Parenting education programs. In G. Llewellyn, R. Traustadóttir, D. McConnell, & H. Sigurjónsdóttir (Eds.), Parents with intellectual disabilities: Past, present futures (pp. 121–136). West Sussex, UK: Wiley-Blackwell.
Feldman, M. A., Ducharme, J. M., & Case, L. (1999). Using self-instructional pictorial manuals to teach child-care skills to mothers with intellectual disabilities. Behavior Modification, 23, 480–497.
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Glaun, D., & Brown, P. (1999). Motherhood, intellectual disability and child protection:
Characteristics of a court sample. Journal of Intellectual and Developmental Disability,24(1), 95–105.
Hodes, M. W., Meppelder, H. M., Schuengel, C., & Kef, S. (2014). Tailoring a video-feedback intervention for sensitive discipline to parents with intellectual disabilities: a process evaluation. Attachment & Human Development, 16(4), 387-401. doi:10.1080/14616734.2014.912490
James, H. (2004). Promoting effective work with parents with learning disabilities. Child Abuse Review, 13, 31–41.
Kleefman, M., Reijneveld, S. A., & Jansen, D. C. (2015). Prevalence and determinants of need for formal parenting support among parents raising a child with a borderline to mild intellectual disability. Journal Of Intellectual & Developmental Disability, 40(1), 49-56. doi:10.3109/13668250.2014.956659
Knowles, C., Machalicek, W., & Van Norman, R. (2015). Parent education for adults with intellectual disability: A review and suggestions for future research. Developmental Neurorehabilitation, 18(5), 336-348. doi:10.3109/17518423.2013.832432
Lightfoot, E. & DeZelar, S. (2015). The experiences and outcomes of children in foster care who were removed because of a parental disability. Children and Youth Services Review. Pre-publication manuscript retrieved from: http://www.sciencedirect.com/science/article/pii/S0190740915301432
LaLiberte, T. L., & Lightfoot, E. (2013). Breaking Down the Silos: Examining the Intersection Between Child Welfare and Disability. Journal Of Public Child Welfare, 7(5), 471-479. doi:10.1080/15548732.2013.865962
Lewis, C., Stenfert-Kroese, B., & O’Brien, A. (2015). Child and family social workers’ experiences of working with parents with intellectual disabilities. Advances In Mental Health & Intellectual Disabilities, 9(6), 327-337. doi:10.1108/AMHID-03-2015-0013
Lightfoot, E., Hill, K., & LaLiberte, T. (2010). Disability in the termination of parental rights and other child custody statutes. Child Abuse and Neglect, 34, 927–934. doi:10.1016/j.chiabu.2010.07.001
Lightfoot, E., LaLiberte, T., & Hill, K. (2007). Guide to creating legislative change: Disability status in termination of parental rights and other child custody statutes. Minneapolis: University of Minnesota. Retrieved from http://www.cehd.umn.edu/ssw/CASCW/attributes/PDF/LegislativeChange.pdf
Llewellyn, G. and Hindmarsh, G. (2015). Parents with an intellectual disability in a population context. Current Developmental Disorders Report. 2(2), 119-126.
Llewellyn, G., & McConnell, D. (2002). Mothers with learning difficulties and their support networks. Journal of Intellectual Disability Research, 46, 17–34.
Llewellyn, G., McConnell, D., & Ferronato, L. (2003). Prevalence and outcomes for parents with disabilities and their children in an Australian court sample. Child Abuse and Neglect, 27, 235–251.
Llewellyn, G., McConnell, D., Russo, D., Mayes, R., & Honey, A. (2002). Home based programs for parents with learning difficulties: Lessons from practice. Journal of Applied Research in Intellectual Disabilities, 15, 341–353.
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Meppelder, M., Hodes, M., Kef, S., & Schuengel, C. (2015). Parenting stress and child behaviour problems among parents with intellectual disabilities: the buffering role of resources. Journal Of Intellectual Disability Research, 59(7), 664-677. doi:10.1111/jir.12170
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