Source: Azar, S., Robinson, L., & Proctor, S. (2012). Chronic neglect and services without borders: A guiding model for social service enhancement to address the needs of parents with intellectual disabilities. Journal of Mental Health Research in Intellectual Disabilities, 5, 130-156
What did the researchers do?
The researchers reviewed key literature on instruments for screening functional capacities of parents and on interventions used in the US. Based on the evidence, the researchers then offered a range of recommendations for improvements to child protection services.
Reason for the study
The researchers noted from the evidence that parents with intellectual disabilities become involved with the child protection system (CPS) more often than parents with average intelligence – and often can be involved for a longer period of time. They also noted that significantly more money is spent on intervention than prevention in the USA.
The researchers stated that traditional parenting supports and services in response to a crisis are not as effective for parents with intellectual disabilities as they are for parents without intellectual limitations.
What did the researchers find?
The researchers developed evidence-based recommendations in three areas:
- Improving the screening and assessment of parents with suspected or known intellectual disabilities
- Adapting services and interventions to meet the needs of parents with intellectual disabilities
- Changing the way staff are selected and trained.
More detail about their recommendations can found below in the section 'How could this research be used?'
The researchers noted that the research evidence used has limitations such as small sample size
How could this research be used?
The researchers proposed system change, based on their recommendations.
In particular they proposed that their recommendations can be used for services to take a proactive rather than a reactive approach to supporting parents with intellectual disabilities, and that this would result in cost savings in the long term.
They stated that if the recommendations they provide are implemented, families would experience less intrusion by services, would receive the long-term support they need, parents would feel less isolated, and the repeating cycle of neglect would cease.
The researchers' recommendations were:
1. Screening and assessment
- Existing assessments aimed at supporting families need to be adapted to suit the needs of parents with intellectual disabilities.
- Assessment tools that have been used in other support initiatives could be improved by testing them with parents with intellectual disabilities involved with child protection services.
- The development of new tools could be needed to find out about a parent's history.
- Assessment could need to take place over a period of time as the parent gets used to having child protection involved.
- Early screening by experienced staff could identify specific needs, for example particular learning styles, and could lead to better targeted services being recommended.
- Assessing a parent's strengths and weaknesses and finding out what skills they need to parent competently is the best approach. For example, a parent could need skills such as reading a thermometer, or problem solving.
- Other beneficial assessments could include measuring stress and social support, and interviewing family members or others who have provided support before.
2. Services and interventions
- Behavioural programs that use strategies such as task analysis can help build parenting skills. The researchers recommended three in-home programs of this type:
- University of California Los Angeles Parent Child Health and Wellness Project*, Parent Education Project**, and SafeCare (being adapted in 2012 for use with parents with intellectual disabilities ).
- Interventions that use a mix of watching, listening, and doing, and use real-life examples and in-home practice are the most effective.
- Cognitive (mental) strategies can be effective for treating anxiety, enhancing social skills, and helping with anger management. They can also help with challenging rigid thinking, improving problem solving, and changing the way a parent views a situation.
- Booster sessions could be needed as changes in a child's developmental needs could create new challenges for parents with intellectual disabilities.
- Service providers and agencies should work together to share strengths, reduce the burden on any one agency and streamline service provision.
- Work with the community to develop resources is needed. Community-based networks of professionals can help parents navigate the step involved. For example, medical professionals could translate medical jargon, or provide more appointment reminders.
- Programs that use community mentors who can help parents and provide residential placements for entire families can boost self-sufficiency and help keep families together.
- New technology available on smart phones could be useful for both assessment and intervention, such as showing short video clips of parenting skills.
- An approach that addresses issues such as mental health, substance abuse, low educational levels, single parenthood, and high stress, is needed.
3. Selecting and training staff
The researchers also recommend that staff need to:
- be able to use observation and interviews to identify possible disabilities and refer a family for further assessment.
- know how disability impacts on physical, social, emotional and cognitive functioning and parenting activities.
- have experience in coordinating services.
- have an understanding of how the parent having more than one disorder (for example cerebral palsy, seizures or mental health problems) affect parenting, case planning, and treatment.
- have an ability to work with people using plain English and have strong problem solving skills. http://www.plainlanguage.gov/.
Other recommendations were that:
- Training staff in other agencies about child neglect can help agencies to work together.
- Recruiting staff with experience with adults who have cognitive (mental) difficulties should be a priority.
- Initial and ongoing staff training should prioritise understanding intellectual disabilities, much like emphasis is currently given to ensuring services are accessible and inclusive of diversity.
- Training in behavioural and cognitive-behavioural strategies should be provided.
About the researchers
Lara Robinson and Stephon Proctor are also from the Department of Psychology at Pennsylvania State University, USA.
*Note that development of the Australian Healthy & Safe. An Australian Parent Education Kit is based on the Parent Child Health and Wellness Project
**Note that development of the Child Care Module in the Australian Parenting Young Children program is based on the Parent Education Project