Supporting Parents with Intellectual and Developmental Disabilities

Parenting can be a challenging and rewarding journey for everyone, including individuals with Intellectual and Developmental Disabilities (IDDs). In 2006, the UN Convention on the Rights of Persons with Disabilities affirmed in Article 23 that “States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships…”. Despite this commitment, Lightfoot and DeZelar (2020) note that many parents with IDDs continue to experience high rates of involvement with the child welfare system, including termination of parental rights. An effective support system is essential to addressing this inequity and to promoting the well-being of both parents and children.

Research indicates that parent training interventions can produce positive outcomes for parents with intellectual disabilities (IDs). A 2018 review by Coren, et al. identified several programs that demonstrated positive results. A parenting skills program in Canada that conducted home visits by a trainer found significant benefits of intervention when addressing skill areas assessed as deficient.  A video-based intervention programme in the Netherlands that was based on attachment and coercion theory found a reduction in parenting stress compared to the control group. A small-group training program referred to as STARS, based in Alabama, resulted in improvements in maternal-child interaction measures when compared to the control group.  Additionally, a home learning programme in the UK, consisting of weekly visits and focused on managing home dangers, accidents, and childhood illness, resulted in improvements in home safety measures. 

While parent training is an important element of supporting parents with IDDs, Lightfoot and DeZelar (2020) developed a Parent Centered Planning model to address a need for ongoing support that enlisted the broader family and community network to support parents. This model empowers individuals to identify and build parental supports that address the parent-child unit and focus on the parenting role. The purpose of this model is for the parent and their community to understand the parenting goals and needs of the children and formulate a short-term and long-term plan with the support of a facilitator, which is inclusive of informal and formal supports to achieve these identified goals. This model includes four phases: Preparation, Scheduling and Inviting, Parent Centered Planning Meeting, and Transition (Follow-Up Phase). Key components of the Parent Centered Planning Meeting are a strength-based focus and breakdown of big dreams into actionable steps, while the follow-up focuses on guiding the parent to utilize supports. 

Support is essential not only for parents with IDDs, but for all parents. As identified by Lightfoot and LaLiberte (2011), most parents in North America rely heavily on formal and nonformal supports to meet parenting demands. Examples include:

Formal Supports	Informal Supports
Paid daycare Housecleaning Paid Tutoring Take-Out	Grandparents taking the kids for the night (respite care) Neighbors picking up groceries for a new parent (chore services) Parents carpooling together (Transportation Services)

Parents with IDDs often require similar supports, but with adaptations to address disability- specific needs that interact with the parents' ability to fulfill parenting responsibilities. It is important to recognize that parents with IDDs may face increased risks, such as low income, unemployment, poor housing, single parenthood and social isolation (Schuengel, et. al. 2017). These factors should be addressed through comprehensive supports. Examples of beneficial supports that may help a parent with IDD include (Lightfoot and LaLiberte, 2011; Koolen et al., 2019): 

• Day care services

• Concrete childcare support: dressing, feeding and bathing

• Respite care

• A co-parent

• A parent Mentor

• In-Home Parenting Training

• Money management assistance

• Homework tutoring

• Housekeeping: washing clothes and cooking meals

• Child-raising support: setting boundaries, playing and sexual education

• Safety planning

• Long-term family foster care

• Support with services: meeting with the doctor or in court

• Financial support: money for diapers and financial management skills

• Emotional support

Parents with IDs identified the following valued sources of support that should be considered (Koolen, et al, 2019):

Individual	Type of Support
Family members (especially mothers, but also grandparents), partners and peer parents	child care and emotional support; alternative to/ protection from foster care
Friends, Neighbors and volunteers	Practical support
Advocates	Ensuring voice is heard in court, to help them keep their child or maintain contact with their child when in foster care
Social Workers	Practical and Emotional Support
Psychologists and healthcare staff (in particular midwives)	Practical Guidance and Emotional Support

Parents with IDs identified that successful supports should be available, long-term and continuous support, and individualized support. They also expressed value in supports who are honest, straightforward, available, friendly, helpful, good listeners, and not patronizing. (Koolen, et al, 2019). Parents with IDDs, like all parents, wants to provide safety, love and opportunities for the children to thrive. When the right supports are in place, the well-being of both parents and children can improve.

References:

Coren, E., Ramsbotham, K., & Gschwandtner, M. (2018). Parent training interventions for parents with intellectual disability. Cochrane Database of Systematic Reviews, (7).

Koolen, J., van Oorsouw, W., Verharen, L., & Embregts, P. (2020). Support needs of parents with intellectual disabilities: Systematic review on the perceptions of parents and professionals. Journal of Intellectual Disabilities, 24(4), 559-583.

Lightfoot, E., & DeZelar, S. (2020). Parent centered planning: A new model for working with parents with intellectual and developmental disabilities. Children and Youth Services Review, 114, 105047.

Lightfoot, E., & LaLiberte, T. (2011). Parental supports for parents with intellectual and developmental disabilities. Intellectual and developmental disabilities, 49(5), 388-391.

Schuengel, C., Kef, S., Hodes, M. W., & Meppelder, M. (2017). Parents with intellectual disability. Current opinion in psychology, 15, 50-54.

United Nations. Convention on the rights of persons with disabilities. New York: United Nations, 2006

Amanda Deering, Behavior Specialist, Miren Behavior