Parents and parenting with intellectual disabilities: Messages from research

Parents and parenting with intellectual disabilities

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  • Intellectual disability is a poor indicator of parenting competence
  • Many children brought up by parents with intellectual disability fare well
  • Parents with intellectual disability can learn and maintain new parenting skills
  • Services are generally ill-equipped to support parents with intellectual disability
  • Many parents with intellectual disability are thwarted by poverty and prejudice

In the early part of the 20th century, persons with intellectual disabilities[1] found themselves treated as social pariahs. By some accounts, the ‘feeble-minded’ were moral degenerates and the root cause of society’s ills. Allowing them to reproduce was for many, at that time, unthinkable. Eugenic sterilisation was legislated and vigorously implemented in many jurisdictions “for the protection and health of the State” (see Buck v Bell, 274 US 200). The discourse has changed radically over the last 100 years.  Today, the right of persons with disabilities, including persons with intellectual disability, to “marry and found a family” is affirmed in the United Nations Convention on the Rights of Persons with Disabilities (2006). Under Article 23, States Parties are required to take “effective action” to “eliminate discrimination”, and to render “appropriate assistance” to persons with disabilities in the performance of their child-rearing responsibilities.

There are now 400-plus published empirical studies on the topic of parents and parenting with intellectual disability (IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disability, 2008). The earliest studies in the field addressed the question of heritability. These studies found that, although intelligence is influenced by genes, the vast majority of children born to parents with intellectual disability have ‘normal’ intelligence (e.g., Brandon, 1957; Reed & Reed, 1965). From the 1980s onwards researchers turned their attention to the support and learning needs of parents with intellectual disability, and more broadly, the determinants of parenting and child outcomes.  This research has enriched our understanding and dispelled numerous myths.  In this brief report, we outline some important messages from this research.

For an excellent introduction to the topic, see “Parents with Intellectual Disabilities: Past, Present and Futures” (2010, edited by G Llewellyn, R Traustadottir, D McConnell and H Sigurjonsdottir, Wiley-Blackwell).

Parents with intellectual disabilities: Who are they?

The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD), Special Interest Research Group on Parents and Parenting with intellectual disabilities (2008), identifies three discrete groups of parents. The first and numerically smallest group includes parents who had been institutionalised but now live in the community. The second group comprises parents who were never institutionalised but have received services designated for persons with intellectual disabilities more or less continuously throughout their lives. The third group, described as the hidden majority, includes parents who may have been labelled as being a ‘slow learner’ or ‘developmentally delayed’ during their school years,  but on leaving school managed to get by with little or no formal support, that is, until they had children.

Message 1. Intellectual disability is a poor proxy for parenting competence

One consistent research finding is that parents with intellectual disability are diverse with respect to parenting skills. There is general agreement among researchers in the field that, above an IQ score of 60, no systematic relationship exists between IQ and parenting competence (Andron & Tymchuk, 1987; Budd & Greenspan, 1984; Dowdney & Skuse, 1993; Feldman, 1986; Tymchuk, 1990).  As far back as 1984, researchers had reached the conclusion that “few generalisations can be made about the parenting abilities of mentally retarded women”, therefore “each family deserves to be examined on an individual basis for specific child-rearing strengths and weaknesses” (Budd & Greenspan, 1984, p. 488). Furthermore, the available data suggest that any parent with intellectual disability may demonstrate competence in one domain (e.g., sensitive responding) or period of child development, but struggle do so in another. The implication is that parenting competence is not a stable individual trait.

The question then is: how can the observed variation in the skills or competences of parents with intellectual disability be explained? The available data suggest that the learning opportunities and support afforded by the environment, which may be competence-inhibiting or competence-enhancing, is one key determinant (Booth & Booth, 1994; Tucker & Johnson, 1989; Llewellyn & McConnell, 2002). Another is the complexity and intensity of the childcare workload.  That is, the observed variation in parenting performance may be explained, at least in part, by variation in parenting demands (e.g., demands associated with child behaviour problems). A third key determinant is parent health, including physical and mental health, and health behaviours: Poor nutrition, sleep deprivation, depression and so on can impair parenting performance.

Message 2. Parents with intellectual disability can learn parenting skills

There is unequivocal evidence demonstrating that, with appropriate instruction and support, parents with intellectual disability can learn parenting skills. [For excellent reviews of the parenting training research in the field, see Feldman (1994) and more recently Wade, Llewellyn & Matthews (2008)]. The evidence comes from 30 ++ studies, employing single-system, quasi-experimental and randomised controlled trial designs, to investigate the efficacy of various parenting interventions. This research, conducted mostly in North America, England and Australia, has documented positive outcomes with substantial effect sizes in areas such as basic childcare, child health and home safety, and parent-child interactions (Feldman, 1994, 2010; Llewellyn, 1990; Llewellyn et al., 2010; Tymchuk, 1992).

Interventions that have demonstrated efficacy share a number of common features. Firstly, effective training is usually delivered in situ, e.g., in the family home, where new skills will be applied. Second, effective training is tailored to each parent’s individual learning needs and priorities, usually based on a competency-based parenting assessment (see Feldman & Aunos, 2010). Third, training incorporates behavioural teaching strategies including modelling (i.e., the parent is shown, and not merely told ‘how’); opportunities for practice, ideally in a variety of activity settings to promote generalisation; the use of prompts as needed to elicit correct performance; the positive reinforcement of correct performance, usually with praise; and the gentle correction of errors. Video-feedback intervention is also showing promise (Hodes, Meppelder, Moor, Kef & Schuengel, in press).

Message 3. Health and wellbeing outcomes for their children are mixed

Most children born to parents with intellectual disability appear to fare well, often despite early disadvantage [see Collings and Llewellyn (2012) for a useful review and synthesis of the research on child experiences and outcomes].  Notwithstanding, parental intellectual disability is associated with a heightened risk of developmental disabilities, speech and language delays, emotional and behavioural problems, and accidents and injuries (Emerson & Brigham, 2014; Feldman, McConnell & Aunos, 2012; Llewellyn & Hindmarsh, 2015; McConnell, Llewellyn, Mayes, Russo & Honey, 2003). Familial transmission is one contributing factor. Pre-natal exposure to toxins, pre-term delivery and low birth weight may be another (Höglund, Lindgren & Larsson, 2012; McConnell, Mayes & Llewellyn, 2008; Mitra, Parish, Clements, Cui & Diop, 2015). A third factor is developmental deprivation. Without appropriate support, parents with intellectual disability, on average, interact less with their children compared with their peers, and may afford less safe, supportive and stimulating home environments (Aunos, Feldman & Goupil, 2008;  Feldman, Sparks & Case; 1993; Keltner, 1992; Keltner, Wise & Taylor, 1999).

The relationship between parental intellectual disability and child developmental deprivation is however confounded by contextual influences including parent life-history and exposure to environmental adversity. Parents with intellectual impairment are more likely to have experienced trauma in their own childhoods:

  • to be single parents, unemployed and living in poverty, in poor housing and in deprived neighbourhoods;
  • to have few social supports; and
  • to suffer from often unmanaged chronic physical and mental health conditions (Aunos, Feldman & Goupil, 2008; Emerson & Brigham, 2013; Feldman, McConnell & Aunos, 2012; Llewellyn, McConnell & Mayes, 2003; McGaw, Shaw & Beckley, 2007; McGaw, Scully & Pritchard, 2010).

Few studies have attempted to isolate the effect of parental intellectual impairment from such contextual influences. One recent population-based study found that the increased risk of poor developmental health associated with maternal intellectual disability could be explained, in large part, by socio-economic disadvantage and low maternal social support (Emerson & Brigham, 2014).

Message 4: Many parents with intellectual disability have their children taken from them by child welfare authorities

The harsh reality is that many parents with intellectual disability have their children taken from them by child welfare authorities. While the population prevalence of intellectual disability may be no greater than one percent, parental intellectual disability or ‘cognitive impairment’ is documented in approximately ten per cent of child maltreatment investigations, and more than twenty per cent of investigations that result in child apprehension and out-of-home placement (Booth, Booth & McConnell, 2005, Llewellyn, McConnell & Ferronato, 2003; McConnell, Feldman, Aunos & Prasad, 2010, 2011; Tossebro, Midjo, Paulsen & Berg, in press).

The over-representation and differential outcomes for children of parents with intellectual disability in child maltreatment investigations is not easy to reconcile with evidence showing that (a) the association between parental intellectual disability and parenting competence is not strong, and (b) that with appropriate training and support, most parents with intellectual disability can learn and maintain parenting skills, with concomitant benefits to their children. A partial explanation for the high rate of state intervention into these families is the clustering of other ‘risk and vulnerability factors’ together with parental intellectual disability, including but not limited to poverty, social isolation and mental health issues (McConnell et al., 2010, 2011).

The chief factor contributing to the over-representation of children of parents with intellectual disability in the out-of-home-care system, is the lack of suitable supports and services. Research has uncovered a number of barriers to, and deficiencies in the planning and delivery of services to parents with intellectual impairment and their children (Clayton, Chester, Mildon & Matthews, 2008; Goodinge, 2000; LaLiberte, 2013; McConnell, Llewellyn & Bye, 1997; Wade, Mildon & Matthews, 2007; Ward & Tarleton, 2007). These include but are not limited to:

  • The conflation of parental intellectual impairment with perceived parenting deficiencies, resulting in a failure to consider plausible alternative explanations for any perceived deficiencies (e.g., environmental pressures) and, the wrongful assumption that parenting deficiencies are irremediable;
  • Shortcomings in the assessment of parenting capacity and support needs, including the tendency to focus on (a) parent traits, such as IQ, instead of how parents and children function together in their environments; and (b) parenting deficits, instead of their strengths and how to build on them;
  • Resource-led service planning in which parents are fitted into existing services rather than services being designed to fit their needs. This process of planning tends to be program-driven rather than citizen-centred, allowing little scope for parent participation;
  • Failure to utilise evidence-based parenting training strategies (i.e., ‘what works’ for parents with intellectual impairment). All too often parents with intellectual disability are referred to programs that fail to accommodate their learning needs;
  • A blinkered focus on parenting training, resulting in the neglect of other potential parent needs, such as the need for trauma, grief and/or relationship counselling, health care (e.g., mental health and addictions), safe housing and financial aid, and positive social relationships;
  • A lack of flexibility with respect to support intensities and service timeframes. Many parents with intellectual impairment may need intermittent support, of varying intensity, over the long term. A related concern is that families often have to wait until a crisis erupts before services respond;
  • Lack of co-ordination across services, resulting in many parents with intellectual impairment either ‘falling through the cracks’ or an overwhelming number of agencies and workers involved with the family, each placing different and sometimes competing demands on the parents.

Parents and parenting with intellectual disabilities: New directions

In conclusion, we are today witnessing a historical shift from a focus on individual deficits (presumed parenting deficits of parents with intellectual disability) to a focus on systems deficiencies. The question is, “how can we build systems’ capacity to support parents with intellectual disability and promote a healthy start to life for their children?” This reflects the understanding that the difficulties experienced by many parents with intellectual disability have as much or more to do with our failure to offer broad-spectrum, evidence-based supports, than it does with intellectual disability per se. This shift is evidenced, for example, by Australia’s Healthy Start strategy, a federally funded initiative, led by consortium partners, the University of Sydney and the Parenting Research Centre, to build national capacity to improve health and wellbeing outcomes for children whose parents have learning difficulties.  The Healthy Start website (www.healthystart.net.au) is an excellent place to start searching for information and resources to support professional practice. The site includes a wealth of information,

References

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Aunos, M., Feldman, M., & Goupil, G. (2008). Children of mothers with intellectual                disability: a link between home environment, parenting abilities and children’s behaviours. Journal on Applied Research in Intellectual Disability Special Issue, 21(4), 320-330.

Booth ,T., & Booth, W. (1994). Parenting under pressure: Mothers and fathers with learning difficulties. Buckingham, UK: Open Press University.

Booth, T., Booth, W., & McConnell, D. (2005). Care Proceedings and Parents with Learning Difficulties:  Comparative Prevalence and Outcomes in an English and Australian Court Sample. Child & Family Social Work, 10, 353-360.

Brandon M. W. G. (1957). The intellectual and social status of children of mental defectives. Journal of Mental Science, 103, 710–738

Budd, K. S., & Greenspan, S. (1984). Mentally retarded mothers. In E. Blechman (Ed.), Behavior modification with women (pp. 477-506). New York: Guilford Press.

Clayton, O., Chester, A., Mildon, R., & Matthews, J. (2008). Practitioners who work with parents with intellectual disability: Stress, coping and training needs. Journal of Applied Research in Intellectual Disabilities, 21(4), 367-376.

Collings, S., & Llewellyn, G (2012). Children of parents with intellectual disability:  Facing poor outcomes or faring okay? Journal of Intellectual & Developmental Disability, 37(1), 65-82.

Dowdney, L., & Skuse, D. (1993). Parenting provided by adults with mental retardation. Journal of Child Psychology and Psychiatry, 34(1), 25-47.

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Emerson, E., & Brigham, P. (2014). The developmental health of children of parents with intellectual disabilities : Cross sectional study. Research in Developmental Disabilities, 35(4), 917-921.

Feldman, M.A., McConnell, D., & Aunos, M. (2012). Parental cognitive impairment, mental health and child outcomes in a child protection population. Journal of Mental Health Research in Intellectual Disabilities, 5(1), 66-90.

Feldman, M. A., Sparks, B., & Case, L. (1993). Effectiveness of home-based early intervention on the language development of children of mothers with mental retardation. Research in Developmental Disabilities, 14(5), 387-408.

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Feldman, M.A. (1994). Parenting education for parents with intellectual disability: A Review of Outcome Studies. Research in Developmental Disabilities, 15, 299-332.

Feldman, M.A. (2010). Parenting education programmes. In G. Llewellyn, R. Traustadottir, D. McConnell, & H. B. Sigurjonsdottir (Eds.), Parents with intellectual disabilities: Past, present and futures, (pp. 107-136). Chichester, UK : John Wiley & Sons.

Feldman, M.A., & Aunos, M. (2010). Comprehensive, competence-based parenting assessments for parents with learning difficulties and their children. Kingston, NY: NADD Press.

Goodinge, S. (2000). A jigsaw of services: Inspection of services to support disabled adults in their parenting role. London: Department of Health.

Hodes,M., Meppelder, M., Moor, M., Kef, S., & Schuengel, C.  (in press). Using video-feedback intervention for positive parenting to diminish parenting stress among parents with intellectual disabilities: A randomized controlled trial. Journal of Applied Research in Intellectual Disabilities.

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Llewellyn, G., & McConnell, D. (2002). Mothers with learning difficulties and their support networks. Journal of Intellectual Disability Research, 46(1), 17-34.

Llewellyn, G., McConnell, D., & Mayes, R. (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27(1), 17-19.

Llewellyn, G., Traustadottir, R., McConnell, D. &. Sigurjonsdott, H. B (Eds.). (2010). Parents with intellectual disabilities: Past, present and futures. UK: Wiley-Blackwell.

McConnell, D., Feldman, M., Aunos, M., & Prasad, N.G. (2011). Parental cognitive impairment and child maltreatment in Canada. Child Abuse and Neglect, 5, 621-632.

McConnell, D., Feldman, M., Aunos, M. & Prasad, N. (2010). Child maltreatment investigations involving parents with cognitive impairments in Canada. Child Maltreatment, 16(1), 21-32.

McConnell, D., Llewellyn, G., & Bye, R. (1997). Providing services for parents with intellectual disability: Parent needs and service constraints. Journal of Intellectual and Developmental Disability, 22(1), 5-17.

McConnell, D., Llewellyn, G., Mayes, R., Russo., D., & Honey, A. (2003). Developmental profiles of   children born to mothers with intellectual disability. Journal  Intellectual & Developmental Disability, 28(2), 122-134.

McConnell, D., Mayes, R., Llewellyn, G. (2008). Women with intellectual disability at risk of adverse pregnancy and birth outcomes. Journal of Intellectual Disability Research, 52, 529-535.

McGaw, S., Shaw, T., & Beckley, K. (2007). Prevalence of Psychopathology across a service population of parents with intellectual disability and their children. Journal of policy and practice in Intellectual disability, 4(1), 11-22.

McGaw, S., Scully, T., & Pritchard, C. (2010). Predicting the unpredictable? Identifying high-risk versus low-risk parents with intellectual disabilities. Child abuse & neglect, 34(9), 699-710.

Mitra, M., Parish, S. L., Clements, K. M., Cui, X., & Diop, H. (2015). Pregnancy Outcomes Among Women with Intellectual and Developmental Disabilities. American journal of preventive medicine, 48(3), 300-308.

Reed E. W. & Reed S. C., (1965). Mental Retardation: A Family Study. Saunders, Philadelphia.

Tøssebro, J., Midjo, T., Paulsen, P., & Berg, B. (in press). Prevalence, trends and custody among children of parents with intellectual disabilities in Norway. Journal of Applied Research in Intellectual Disabilities.

Tucker, M.B., & Johnson, O. (1989). Competence promoting versus competing inhibiting social support for mentally retarded mothers. Human Organization, 48, 95-107.

Tymchuk, A. J. (1990). Parents with Mental Retardation A National Strategy. Journal of Disability Policy Studies, 1(4), 43-55.

Tymchuk, A. (1992). Predicting adequacy of parenting by people with mental retardation. Child  Abuse and Neglect, 16, 165-178

Wade, C., Llewellyn., G., & Matthews, J. (2008). Review of parenting training interventions for parents with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 21, 351-366.

Wade, C. M., Mildon, R. L., & Matthews, J. M. (2007). Service Delivery to Parents with an Intellectual Disability: Family‐Centred or Professionally Centred?. Journal of Applied Research in Intellectual Disabilities, 20(2), 87-98.

Ward, L., & Tarleton, B. (2007). Sinking or swimming? Supporting parents with learning disabilities and their children. Tizard Learning Disability Review, 12(2), 22-32.

[1] The term “learning disabilities” may be more frequently used in the United Kingdom

davidDavid McConnell, PhD, is Professor and Director of the Family and Disability Studies Initiative, Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Canada.  Professor McConnell is an international leader in the field of parents and parenting with intellectual disability.

 

 

LauraLaura Pacheco, PhD, is a clinical social worker, post-doctoral researcher and coordinator of the parenting service at the CUISSS-ODIM (West Montreal Readaptation Center), Montreal, Canada. Her doctoral research focused on the experiences of mothers with intellectual disabilities from ethno-cultural communities in Canada.

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