Family support

What we know:

(1) Overall Influences on Parenting

  • While some generalizations can be made, parents with intellectual disability are a heterogeneous group. Thus their support and service needs will vary from parent to parent and family to family.
  • A range of presumptions about parents with intellectual disability have been shown to be more fallacy than fact:
    * intellectually disabled parents do not have significantly more children than other parents;
    * they do not give birth to intellectually disabled children at a rate higher than that found in the general population;
    * their children do not necessarily have birth disabilities or become disabled;
    * parents with intellectual disability will not inevitably abuse or neglect their children;
    * they will not inevitably provide inadequate child care; and
    * they are able to learn and apply adequate parenting skills.
  • Various factors contribute to successful parenting or predispose others to inadequate parenting. These factors are:
    * Number of children
    * Income level
    * Additional health issues of the parents
    * The parents' own upbringing
    * The availability of parent education resources which take into consideration the specific learning needs of parents with intellectual disability
    * Available familial supports
  • There is no statistically significant correlation between the developmental status of pre school-aged children and characteristics of the mother or home/environment. Parents with intellectual disability should not be thought incapable of providing the stimulation children need to develop 'normally'.
  • A preliminary study shows the health of parents with intellectual disability to be significantly worse than that of the general Australian population. Further, when controlling for socio-economic status, participants' reported health was significantly worse in all but one category.
  • Parents with intellectual disability are not inevitably incapable of caring for their children. Sometimes this seems to be the case because only those struggling with the tasks of parenting are known to support services.

(2) Support Networks

  • Parents with intellectual disability, like other parents, exhibit a preferred sequence in seeking help, beginning with their partners, then family members, and finally, professionals.
  • Family members are central to the support networks of mothers with intellectual disability. However, not all family members are supportive and competence promoting; some inhibit parents' competence.
  • Service providers make up the second largest group of people who provide support to parents with intellectual disability.
  • Mothers typically have few friends or neighbours who they regard as supportive.
  • Mothers' support networks vary considerably according to their household living arrangement. Generally, mothers living alone with their children have widely dispersed family ties and access service centred supports. In contrast, mothers living in a parent household primarily have stable, local family centred supports. Those living with their partners have a high proportion of relatively dispersed family ties.
  • Support networks are not always resources; at times they serve as constraints to parent competence and well-being.
  • Parents play an active role in determining what support they want, from whom, and in what way it is to be received and used. In other words, they actively determine and manage the presence of others in their family lives. Parents are not necessarily 'victims' of their support networks.

(3) Support required By Parents

  • The most common support need reported by parents, their family and service providers is help with child care and child development. These include understanding child development, knowing how to stimulate a child, how to discipline a child, how to maintain a child's hygiene and safety, and how to deal with medical emergencies.
  • Parents also report needing assistance in the community participation area: exploring work options; knowing what community services are available and how to access them; developing self esteem and assertiveness skills; meeting people and making friends; and advocating on behalf of themselves and their children. This is because typically many parents are isolated and without friendships or peer group support.

Programs and Services

  • The primary purpose of programs for parents with intellectual disability should be to understand the demands on parents and to work toward reducing the gap between the parent's capabilities and the demands of their environment. This can be broken down into three broad outcome areas:
    1. The level of independence of the parent in their community
    Indicators of this include frequency of service use, frequency of requests for assistance, level of integration into services for other parents and their children, the nature of their living environment, and their productive activity in terms of work/community participation.
    2. The quality of performance in everyday parenting activities
    This can be measured from the perspective of parents in terms of their sense of well-being and competence, as well as from the perspectives of their significant others and service providers.
    3. The parent's level of competence in relation to that of others in the same community
    Potential measures include reduced or zero frequency of maltreatment; increased positive ratings on child health, wellness and development; decreased problem identification to social service agencies and child-oriented agencies; and increased problem resolution in relation to social service agencies.
  • Effective service provision will be underpinned by the following assumptions:
    * Parents truly want the best for their child
    * The greatest impact on parent, child and the family comes when the support given is based on the needs, dreams and wishes of the family
    * Parents are more apt to expand their skills and learn new skills when we build on their existing skills and strengths
    * Informal support networks are a primary resource for many families and should be strengthened as much as possible, taking into account the parent's wishes
    * The fundamental goal of supporting parents is to help them enjoy parenting and their child as much as possible
    * A good program must meet the needs of parents so as to, in turn, meet the needs of their children
  • Services will most effectively meet the support needs of parents with intellectual disability if they are:
    1. Tailored to individual family's needs - services must be responsive to each individual parent's and each individual child's specific support needs. To this end, a family centred approach where the interests of both parents and children are served is required.
    2. Provided over the long term - services that provide ongoing rather than one-off support are able to address the changing needs of both parents and children, reinforce newly acquired skills, allow for effective working relationships built on familiarity and trust, and be best placed to avert future crises.
    3. Home-based - services provided in a natural setting are more likely to be better received and applied. They also allow practitioners to identify any issues relevant to the child's welfare in relation to their home environment.
    4. Empowering - practitioners need to be open and upfront about their role; invite, listen to and respect the parent's opinion; involve parents in decision-making by providing options and a freedom to choose; encourage parents to speak up for themselves; and, teach parents skills rather than simply doing it for them.
    5. Pro-active - services need to actively and routinely follow up parents; actively assist parents to become part of their local community by raising awareness about available support services; and, seek out those parents reluctant to use services and who are rarely referred to services to offer support and assistance if parents require this.
    6. At a level parents can understand - service providers need to take into account the special learning needs of parents when designing and implementing programs eg., be aware of each parent's reading ability; simplify explanations; break tasks down into manageable components; demonstrate new skills; and provide opportunities for repetition and reinforcement; and, give parents many opportunities to practice the skills in the situations where they are needed.
  • The effectiveness of any intervention offered will be enhanced if the difficulties with learning frequently encountered by parents with intellectual disability are taken into account, including:
    * Tendency to overgeneralise instructions
    * Difficulty following complex instructions, or modifying instructions
    * Problems with long and short term memory
    * Difficulty in correctly recognizing cues and responding to the child
    * Difficulty in recognizing problems and problem solving
    * Difficulty with reading or only able to read basic words
    * Difficulty with judgement and decision-making
    * 'Splinter skills' - parents may exhibit very good abilities in some areas and yet have a surprising lack of skills in others
  • Parents with intellectual disability will make most use of mainstream services if:
    * they are accessible and widely known about in the community
    * they are welcoming to parents with intellectual disability
    * they are specifically funded to provide transport as necessary so that parents can attend
    * staff have the knowledge and skills about parenting, intellectual disability, the impact of intellectual disability on learning, and how to advocate for parents
    * they are specifically funded to develop and distribute plain English information and alternative forms of information for non-literate parents and those of non-English speaking background.
  • For tips on providing support services by way of a parent education program, refer to Parent Education Programs.

What we can do:

  • Operate from a sound working knowledge of current empirical research, rather than relying on unfounded opinions or past methodologically flawed research about this parent group. Use this knowledge to raise awareness in the health, social services, education and legal sectors, and in the community at large.
  • Research
  • Adopt a macro approach to the parents you are working with, and consider the socio-economic and community context of each parent. These contexts are critical to parenting success.
  • Consult parents as to what they perceive their service and support needs to be. They are the best judge of what they would like. They may need help to recognize shortcomings - as do most parents - but particularly so if they have had little prior experience with children or poor parenting models.
  • Involve parents in any discussion or decision-making about their children, their partner/spouse and their family.
  • Promote stable, long term support networks by providing opportunities for parents to establish and develop supportive ties with neighbours and friends. This is of particular importance for those mothers living alone.
  • Facilitate participation and belonging in the community by engaging mothers in activities outside the family home. Linking parents into their community is critical for ongoing, long term parenting success.
  • Be sensitive to mothers' living arrangements, and the influence of these on her access to support, when considering the nature of your intervention.
  • Be wary of viewing 'family' as mother, father and children, without any attention being paid to family constellations, parent networks, and relational processes.
  • Individually assess the support available to parents, taking into account the parents' views of this support as promoting or inhibiting their competence as parents.
  • Provide opportunities for parents to acquire friends by initiating parent-to-parent support groups and by teaching parents skills in developing friendships.
  • Attempt to understand parents' life experiences and the impact of these on current behaviour. Consider parents' self-esteem, social skills, internal/external control, social role, and problem solving skills. Many have been encouraged to remain dependent on family or service providers, and so may not have had adequate preparation for adult life or the challenges of parenthood. Remember that parenting is a socially determined process carried out within a family, social and community context.
  • Pay particular attention to parent health status given the observed poor health status of parents and the associated high risk of poor long term health status for their children.
  • Be wary of labeling. Many children who, whilst labeled at school as being intellectually disabled, successfully integrate as adults into the wider community without needing specialist services for people with intellectual disability or attracting the intellectual disability label.
  • Develop inter-agency collaboration that promotes:
    1. A family-centred focus so that the interests of both parents and children are served;
    2. Preventative work as a priority rather than crisis intervention; and
    3. Access to mainstream services for parents and their children rather than reliance on specialized support services
  • Believe that these parents can succeed
    * Focus on personal growth as opposed to skill acquisition.
    * Be ready to learn from them.
    * Work to a person-centred approach in which the parents participate in setting the agenda.
    * Offer a flexible and responsive support program, allowing parents to participate on their own terms and learn at their own pace.
    * Focus on peer mentoring and narrative learning, that is, by ways of stories shared.
    * Look beyond the disability label. Be careful not to lose sight of each individual's ability in the face of their disability.
    * Talk to parents, not at them or through others. And talk to them as adults, not as children.
    * Do things with them not for them. Be wary of imposing your advice and/or giving overwhelming amounts of advice.
    * Explain things slowly and get straight to the point. Provide information in non-ambiguous, direct short statement. It is often necessary to repeat the information, perhaps over several visits. Ask the parent to explain to you what they think the information means - this will help you to know whether they have understood.
    * Talk to parents face to face.
    * Be honest with them.
    * Offer support in the spirit of accepting that young and older adults with intellectual disability dream of parenthood and share the drive to procreate.
    * Uphold their right to be regarded as the parent of the child.
  • For strategies particular to parents with older children, see Llewellyn, G., McConnell, D., Grace-Dunn, R., & Dibden, M. (1999) Parents with Intellectual Disability and Older Children: Strategies for Support Workers.
  • Where possible, provide support to parents that extends well beyond helping them understand and more competently raise their children and which meets their identified needs for social, vocational and community skills i.e.
    1. Parenting skills - educating parents about child development; how children's needs change over time; how to stimulate child development through play; how to discipline children; how to recognise when children are at risk from others or their own behaviour; how to set boundaries for safety; and how to respond to the challenges of adolescence
    2. Living Skills - equipping parents to use public transport, budget, shop, and cook nutritional meals
    3. Self Esteem and Assertiveness Skills - fostering a greater inner strength and confidence
    4. Informal Social Support - facilitating the development of supportive relationships with other people, particularly other parents
    5. Access to Mainstream Services - providing information, if not introducing parents to, generalist local community services
    6. Advocacy - either advocating on the parent's behalf or empowering them to advocate for themselves

Want to know more? Check out these publications:

McConnell, D., Llewellyn, G., Mayes, R., Russo, D., & Honey, A. (2003) Developmental Profiles of Children Born to Mothers with Intellectual Disability Journal of Intellectual and Developmental Disability, 28 (2), 1-14.

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. & McConnell, D. (2002) Mothers with Learning Difficulties and their Support Networks Journal of Intellectual Disability Research, 46 (1), 17 - 34.

Strike, J., & McConnell, D. (2002) Parents with Intellectual Disability: Just the Same, Only Different Interaction 15 (4), 11 - 15

Strike, R., & McConnell, D. (2002) Look At Me, Listen to Me, I Have Something Important to Say Sexuality and Disability, 20 (1), 53 - 63.

Llewellyn, G., McConnell, D., Cant, R., & Westbrook, M. (1999) Support Networks of Mothers with an Intellectual Disability: An Exploratory Study Journal of Intellectual & Developmental Disability, 24 (1), 7 - 26.

Llewellyn, G., McConnell, D. & Bye, R (1998) Perception of Service Needs by Parents with Intellectual Disability, Their Significant Others and their Service Workers Research in Developmental Disabilities, 19 (3), 245 - 260.

Llewellyn, G., Bye, R., & McConnell, D. (1997) Parents with Intellectual Disability and Mainstream Family Agencies International Journal of Practical Approaches to Disability, 21 (3), 9 - 13.

McConnell, D., Llewellyn, G., & Bye, R. (1997) Providing Services for Parents with Intellectual Disability: Parent Needs and Service Constraints Journal of Intellectual & Developmental Disability, 22 (1), 5 - 17.

Llewellyn, G. (1995) Relationships and Social Support: Views of Parents with Mental Retardation/Intellectual Disability Mental Retardation 33 (6), 349 - 363.

Llewellyn, G. (1994) Generic Family Support Services: Are Parents with Learning Disability Catered For? Mental Handicap Research 7(1), 64 - 77.

Llewellyn, G. (1994) Being a Parent with Intellectual Disability: A Battle Against the Odds Community Bulletin, 18 (1), 9 - 13.

Llewellyn, G. (1994) Parenting: A Neglected Human Occupation. Parents' Voices Not Yet Heard Australian Occupational Therapy Journal, 41, 173 - 176.

Llewellyn, G. (1993) Living Proof: Being a Parent with Intellectual Disability. Proceedings from the 29th Annual Conference of ASSID, Quality and Equality Nov 30-Dec 5, 1993, Newcastle University.

Llewellyn, G. (1993) Talking with Parents with Intellectual Disability. In Johnston, C. (Ed) Does This Child Need Help?Identification and Early Intervention Sydney: Australian Early Intervention Association (NSW Chapter) Inc.

Llewellyn, G. (1993) Parents with Intellectual Disability: Facts, Fallacies and Professional Responsibilities Community Bulletin 17 (1), 10 - 19.

Llewellyn, G. (1990) People with Intellectual Disability as Parents: Perspectives from the Professional Literature Australia and New Zealand Journal of Developmental Disabilities, 16 (4), 369 - 380.

Llewellyn, G., McConnell, D., Grace-Dunn, R., & Dibden, M. (1999) Parents with Intellectual Disability and Older Children: Strategies for Support Workers. Melbourne: Victorian Government Department of Human Services.

Llewellyn, G., McConnell, D., & Bye, R. (1995) Parents with Intellectual Disability: Support and Services Required by Parents with Intellectual Disability. Report to the Disability Services Sub-committee (DDSC) of the Standing Committee of Community Services and Income Security Administrators, Department of Human Services and Health, Canberra.

Llewellyn, G. (1997) Support and Services for Parents with Intellectual Disability: What? When? How? By Whom? Report prepared for the Australian Family and Disability Studies Research Centre, School of Occupational Therapy, Faculty of Health Sciences, University of Sydney.