Inclusive Parenting: Unveiling the Nuances of Healthcare Support for Parents with IDD
Welcome to �this eLearning module:
This module is part of TASP’s series on Working Effectively with Parents with IDD in Healthcare.
www.achancetoparent.net
Welcome!
This training module provides a holistic exploration of parenting with Intellectual and Developmental Disabilities (IDD), addressing misconceptions about parenting abilities based on IQ or Adaptive Behavior Scores.
Participants will gain insights into the diverse characteristics, support needs, and life experiences of parents with IDD, while understanding the unique challenges they face in obtaining healthcare.
Objectives�
In this module, you will:
Parents with Intellectual and Developmental Disabilities (IDD)
Read these statements. Do you agree with them all?
Parents with Intellectual and Developmental Disabilities (IDD)…
What is an intellectual disability?
“An intellectual disability occurs before age 18 and is characterized by significant limitations in intellectual functioning and adaptive behavior as expressed in conceptual, social and practical adaptive skills” (AAIDD, 2011)
Parents with intellectual disabilities may not self-identify as having an intellectual disability.
Some parents, such those on the Autism Spectrum or with a Traumatic Brain Injury may have similar difficulty interpreting and using information.
Can a person with IDD become a parent?
Being a parent is a fundamental right and many people with IDD choose to become parents!
Current research reveals that there are 4.1 million parents with disabilities in the United States, roughly 6.2 percent of all Americans (Powell, R.M., Parish, S.L., & Akobirshoev, I., 2017).
Research shows that IQ does not impact parenting until it falls below 50. Even then, many parents do well with appropriate supports.
Understanding Parents with IDD
Parents with IDD may have varying levels of cognitive functioning, communication skills, and adaptive behavior.
They often require support in areas such as decision-making, problem-solving, and managing daily routines.
Support needs may include assistance with parenting tasks, accessing community resources, and navigating social services.
How do you see this in your setting? Where does it potentially impact how parents with IDD obtain healthcare for themselves or their children?
Challenging Misconceptions
Research has show that IQ or Adaptive Behavior Scores do not accurately reflect an individual's ability to parent effectively. There is no correlation between IQ and adaptive behavior and successful parenting. These scores are not a valid determiner of the ability to parent.
Yet despite this, parents with IDD have their children removed by child welfare at a rate of 40-80% (Rocking the Cradle, 2012), and close to two-thirds of states consider intellectual disabilities a factor for termination of parental rights.
Most parents with IDD live in fear that their child will be removed from their care, or they’ll be investigated, simply because they have a disability.
Focusing on strengths-based approaches rather than deficits is crucial in promoting positive parenting outcomes for individuals with IDD.
Research on Effective Parenting
Despite the many misconceptions about parents with IDD, research shows that parents with IDD can develop effective parenting skills through education, support, and tailored interventions.
Research findings indicate that parents with IDD benefit from support programs that focus on building parenting skills, enhancing social support networks, and promoting family well-being.
Collaborative efforts between healthcare providers, social workers, and community organizations are essential in delivering comprehensive support to parents with IDD.
Characteristics of Parents with IDD
Parents with IDD often possess unique strengths such as empathy, creativity, and resilience.
Understanding and respecting their individual characteristics is crucial in providing tailored healthcare support that meets their specific needs.
Recognizing the diversity within the IDD population helps promote inclusivity and equity in parenting support services.
How have your own life experience impacted your strengths and needs as a person? Have you seen particular strengths in the parents with IDD you see in your work?
Listen to the story of a mom with IDD and her daughter
A Life Defined Not By Disability, But Love
From Story Corp on National Public Radio
Supports Needs of Parents with IDD�
Support needs of parents with IDD encompass various domains, including emotional support, practical assistance, and access to resources.
Tailored support interventions should address the individual strengths and challenges of parents with IDD to promote positive parenting outcomes.
Collaborative approaches involving healthcare providers, social services, and community organizations are essential in delivering holistic support to parents with IDD.
Impact of Life Experiences
Life experiences, such as past trauma, stigma, and societal attitudes, can influence parenting success among individuals with IDD.
Scotti et al. (2012) noted that upwards of 70% of people with IDD experienced at least one traumatic event during their lifetime, with multiple experiences most common.
As a healthcare provider, promoting resilience, confidence, and self-advocacy skills helps parents with IDD overcome challenges and thrive in their parenting roles. You can learn more about this in our modules “Building Trust and Effective Communication in Healthcare for Parents with IDD.”
How Negative Life Experiences Impact Success
Think how each of the life experience on the left can lead to the possible responses on the right. How can healthcare providers mitigate the reactions on the right when working with a parent with IDD?
Challenges in Obtaining Health Care
Parents with IDD face barriers in accessing healthcare services, including past experiences, communication difficulties, lack of accessible information, and stigma.
Navigating complex healthcare systems and understanding medical information can be challenging for individuals with IDD.
Advocacy efforts are needed to address systemic barriers and promote healthcare equity for parents with IDD.
Challenges in Obtaining Health Care
Self-advocates from across the United States who completed a survey by TASP in 2023 identified these top five challenges in obtaining healthcare:
Barriers in Accessing Health Care
Limited access to healthcare information and resources creates barriers for parents with IDD in obtaining timely and appropriate medical care.
Stigma and discrimination in healthcare settings can lead to negative experiences and reluctance to seek healthcare services.
Lack of accommodations and support for communication and decision-making further impede access to healthcare for parents with IDD.
From our 2023 Survey, parents noted additional barriers to accessing healthcare:
Strategies for Overcoming Healthcare Challenges
With the noted barriers and challengers, can you think of universal ways to overcome healthcare access challenges for parents with IDD?
Providing accessible healthcare information and resources in formats that cater to diverse learning needs, such as plain language, visual aids, and alternative communication methods.
Offering training and education for healthcare providers on how to effectively communicate with and support parents with IDD.
Establishing partnerships between healthcare providers, disability support services, and advocacy organizations to address systemic barriers and promote healthcare access and equity.
Individual Modifications
Parents with IDD may not always ask for specific modifications or may not identify as having a disability. In those cases, the provider should make care modifications based on best practices that reflect the ethical code of conduct of their profession.
When possible, link the parent with someone they trust who can attend the appointment with them for support.
Ask the parent how you can provide individual supports to meet their needs before, during and after an appointment.
Build a positive relationship with the parent over time.
Case Study: Navigating Healthcare
Case Background:
Maria is a 32-year-old parent with an and Developmental Disabilities (IDD) who recently gave birth to her first child. Maria has limited literacy skills and struggles with understanding complex medical information. She relies on support from her spouse, Johan, and her sister, Carmen, who serve as her primary caregivers.
Case Study: Navigating Healthcare
Based on this information, what challenges may Maria face in accessing healthcare?
Case Study: Navigating Healthcare
Based on the identified challenges, what strategies could you implement to mitigate them?
Case Study: Navigating Healthcare
Outcome:
By implementing these strategies, Maria and her support network overcome the barriers encountered in navigating healthcare. Maria feels more empowered and confident in managing her and her child's healthcare needs, leading to improved health outcomes and overall well-being for both herself and her child. Additionally, the collaborative efforts between Maria’s healthcare team, support network, and community organizations contribute to a more inclusive and accessible healthcare experience for parents with IDD.
Conclusion
Congratulations!! �You’ve finished the course. �Check out the Additional Resources tab�
Author: Chelsea Tighe, Colleen Downes, and Cathy Haarstad –TASP
Reviewers:
Lindsay Brillhart
Ivanova Smith
Quiana Mayo
Jamie Junior
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Additional Resources - Organizations
The Association for Successful Parenting – supports parents with IDD through education, advocacy, and support. TASP conducts training for professionals and supports parents with IDD to advocate and share their stories: https://achancetoparent.net/
National Resource Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. https://heller.brandeis.edu/parents-with-disabilities/
Proud Parents Connecticut offers plain language resources chosen by parents with differing abilities to help parents be the best parents they can be. https://www.proudparents.info/
Self Advocates Becoming Empowered (SABE): National self-advocacy organization. https://www.sabeusa.org/
Institute for Exceptional Care (IEC) works to make healthcare better and safer for people with intellectual and/or developmental disabilities. https://www.ie-care.org/
The National Center for Disability, Equity, and Intersectionality’s goal is to lead the nation’s charge to identify and reduce life-limiting inequities in healthcare, community living, and justice for people with disabilities. https://thinkequitable.com/
American Academy on Developmental Medicine and Dentistry is a non-profit, membership organization of interdisciplinary health professionals — including primary physicians, medical specialists, dentists, optometrists, nurses and other clinicians — committed to improving the quality of healthcare for people with intellectual & developmental disabilities (IDD).: https://www.aadmd.org/
National Council on Disabilities, Rocking the Cradle Report on Parents with Disabilities:
https://www.ncd.gov/publications/2012/Sep272012
The Arc of the United States: https://thearc.org/position-statements/parents-with-intellectual-developmental-disabilities/
Additional Resources - Learning
Inclusive Health: Caring for Patients with Intellectual Disabilities
https://www.youtube.com/watch?v=yCgKfaB0szE
Protecting the Rights of Disabled Parents Involved with the child welfare system
https://www.youtube.com/watch?v=VzNBi23bCBI
Exploring professionals' practices and perspectives on supporting parents with intellectual disabilities: a qualitative study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10261979/
Mothers with intellectual disabilities: challenges and resilience
Https://www.Youtube.Com/watch?V=swdablinodc
Promising practices to support parents with intellectual disabilities
Https://cascw.Umn.Edu/wp-content/uploads/2019/11/PN34_WEB508.Pdf
Supporting people with disabilities in health care settings
Https://odpc.Ucsf.Edu/clinical/patient-centered-care/supporting-people-with-disabilities-in-health-care-settings
Jack’s Basket Communicating Unexpected News Curriculum: This curriculum will improve healthcare provider communication and enhance patient-provider relationships by equipping them with the knowledge, strategies, and communication techniques required to deliver unexpected news to patients and their families without bias. https://jacksbasket.org/curriculum/
What helps parents with intellectual disability learn parenting skills?
https://www.youtube.com/watch?v=ojQTz9FlNt4
Fathers with learning disabilities
Https://www.Youtube.Com/watch?V=pne133yo5s0