Compassionate Care: Understanding Perspectives of Parents with IDD in Healthcare
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 self-paced training aims to empower healthcare professionals to understand the perspectives of parents with Intellectual and Developmental Disabilities (IDD) regarding healthcare and support.
We encourage you to consider the unique challenges faced by parents with IDD in healthcare settings and use their input to make systemic changes in your setting and practice.
Objectives�
Participants will gain insights into the unique challenges faced by individuals with IDD, fostering a more inclusive and patient-centered approach.
In this module, you will:
What does advocacy mean for parents with IDD?
Parents with IDD have historically been ignored or treated unfairly by the systems designed to help families (Rocking the Cradle, 2012). Through advocacy, the negative impact of these factors may be mitigated.
According to the Center for Parent Information and Resources (2018):
"Self advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.”
What does advocacy mean in healthcare?
What does advocacy look like in healthcare?
What are some ways you advocate for patients?
The Joint Commission speaks to the role of an assigned Patient Advocate, saying “The overall goal of a patient advocate is to provide patients and caregivers with the support and education they need so they can make their own decisions about their next steps.”
That is a formal role, but ANYONE in the health field can be an advocate. YOU can be an advocate by simply being supportive, open, engaged, and ready to listen.
What parents with IDD say
We surveyed parents with IDD, and the people who support them.
Over the next few slides, you will examine firsthand accounts and narratives from individuals with IDD, providing you with a direct understanding of the challenges and experiences faced in healthcare settings.
What Parents Say�Major themes emerged when looking at parent responses to survey questions. These include the need for:�
Communication and Understanding:
Training and Knowledge Enhancement:
Accessibility and Legal Compliance:
"Physical access is not 'extra,' it is the law."
"Accommodations that would be obvious to me but are not to providers.“
Individualized and Respectful Care:
"Providers who show understanding and compassion, do not pass judgment."
"It's hard to complete paperwork while keeping an eye on an active child or talking to the doctor."
"We are all human and should be treated that way."
Administrative Processes and Accommodations:
"Multiple avenues for completing paperwork and space on the forms devoted to acknowledging and accommodating disability needs."
"Ask if the patient (my child) needs special accommodations."
"Difficulty in always being on time and then having to wait.”
What Parents Say
These quotes illustrate the diverse concerns parents with IDD face when accessing healthcare, emphasizing the importance of legal compliance, effective communication, ongoing training, individualized and respectful care, as well as considerations in administrative processes and accommodations.
Take a moment to reflect on these quotes. Which stood out to you the most, and why?
Navigating bad experiences
In a 2017 study, Schwei et al., reported on findings that suggest “the perception of a previous negative experience may influence subsequent health care seeking behaviors.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5548094/)
Over 50% of our parent respondents noted a previous bad experience as the largest barrier to them accessing future care.
How might negative experiences in healthcare have potential long-term effects on future visits?
Navigating bad experiences
Parents talked about:
Not feeling seen or heard:
Feelings of being alone, of always starting over:
“The burden is not the person with the medical challenges it’s the providers that doesn’t read the medical history or lab results and send families in circles.”
Feeling Anxiety:
“There is a lot of anxiety. Getting to the appointment, being met with refusal or bad attitude when accommodations are requested, and anxiety over the reason to be seen. All this anxiety is first met by uneducated and untrained receptionists who can create additional anxiety by creating barriers for access and accommodations.”
General Fears:
“I'm scare(sic) that my treatment are just experimental and not a real treatment because all my doctors must change every 3 years.”
Navigating bad experiences
"We have had numerous horrible experiences, particularly in hospitals. My daughter has experienced institutional bias, individual bias, poor care, lack of accommodations, misunderstanding of a disability and her healthcare needs. She has experienced carelessness and hostility, along with fear of her.”
You can imagine why continuing to access healthcare after these negative experiences might be stressful.
What can we do?
How can you address and overcome these challenges?
Pick one of the quotes on the previous slide. How could that experience make it difficult for that person to access health care in the future?
How would you produce actionable solutions to address the challenges mentioned in the quote?
Recognizing the Value of "Good Experiences"
While negative experiences can discourage individuals with disabilities from accessing health care, supportive and respectful healthcare interactions can have a positive AND restorative value.
How does a positive experience (at a restaurant, when meeting someone new, at a job interview, at a store, etc.) impact your decisions about accessing that service or store in the future? �
What if you had a previous negative experience, and then had a positive experiences? How might that start to change your feelings or opinion?
Recognizing the Value of "Good Experiences"
Parents surveyed want understanding, compassion, and commitment from healthcare providers at all levels.
One person described the best providers as those “…who show understanding and compassion, do not pass judgement and under or overestimate others.”
This respondent went on to say that things that make a huge difference are “outside the box thinking and help when systems get complicated.” As well as “recognition that the health care system is hard to manage and navigate for people with more complex needs.”
Recognizing the Value of "Good Experiences"
Parents share that being that positive force, whether you’re at the front desk, or providing direct medical care, has a huge impact on their:
Recognizing the Value of "Good Experiences"
In describing her experience at a breastfeeding clinic once out of the hospital post-birth, one mother shared how a positive experience impacted her breastfeeding journey:
“I was so tense when I got there because my experience at the hospital was not kind or friendly, but they were not like that at all. They said really positive things and asked what we needed to be successful. It made me actually really start to enjoy breastfeeding and I think it was because of how supportive that clinic was in helping with me with learning how to pump, how to hold my baby.”
Recognizing the Value of "Good Experiences"
It’s imperative to foster positive experiences.
Think about positive experiences you have had or observed in healthcare.
What made those experiences positive and how they can you apply those principles in your own practice?
Tailoring Support to Individual Needs
The population of parents with intellectual disabilities is diverse, just like any population of people. No two people are the same. And no two people, even if they have the same disability, have the same needs.
Interactions and support must be tailored to meet individual needs.
This does not need to be complicated! Parents want to be listened to and heard. They share it can include longer visit times, more time for questions, getting paperwork early, a way to follow-up with questions, and more.
You can ask how you can bets support them!
Tailoring Support to Individual Needs
When asked “What types of support or accommodations would make it easier for you to access healthcare services,” parents most often answered:
These all relate to tailoring support to meet individual needs!
Tailoring Support to Individual Needs
Parents shared how providers can tailor support to meet their needs:
Seek to understand me, not judge me:
Be consistent across everyone in healthcare:
Simple changes (to waiting rooms, check-in procedures, waiting times) can have a big impact:
Tailoring Support to Individual Needs
Think about where you work. Think about the people you see. How can you make 3 simple changes to your practice that would better meet individual needs?
What Parents Want Providers to Know
In hearing from parents, their feedback highlighted the importance of listening to them, believing them, and making simple changes to meet their needs.
“We are all human and should be treated that way”
“We need less judgement and more compassion. Our lives are hard enough.”
“Clinicians don't pay attention to what I say or believe me.”
“Teach medical professionals to listen more than talk AND teach them cultural humility.”
“I would like multiple avenues for completing paperwork and to have space on the forms devoted to acknowledging and accommodating disability needs.”
What Parents Want Providers to Know
Parents also demand that providers know and understand many things about them and their needs. This allows their basic rights to be met. Tailoring services to meet individual needs is a way to provide reasonable accommodations.
“Ignorance of ADA compliance(s) should not be acceptable at this point in our growth as a culture.” – Survey Respondent
The ADA requires that health care entities provide full and equal access for people with disabilities.
*Refer to our training module on the ADA to fully understand the law and healthcare requirements.
What Parents Want Providers to Know
When asked “What do you wish providers knew and understood about you and your needs?” parents referred to needing to know the ADA and adhere to it:
What Parents Want Providers to Know
Think about how the individual’s disability may impact their ability to answer the questions you’re asking. You can modify your questions!
On parent shared:
“Sometimes at doctors' appointments they’re like “does she make eye contact with you?” (asking about my daughter) and I have to be, like I’m autistic! I don’t look at people in the eye. I can’t answer your question and it’s not because I don’t want to it’s because I don’t look at her in the eye, I look at her face.” – Dorothy
Simple Changes for Big Impact�
Simple changes in waiting rooms, check-in procedures, and waiting times can have a huge impact on the healthcare experiences of parents with IDD.
In addition, knowing the law, implementing changes to meet the legal requirements of the ADA, and seeking to understand rather than judge parents with IDD will all help to address the ongoing disparities in healthcare access for people with IDD.
"I’m not a bad parent just because I have an IDD."
Want to hear directly from parents about working with professionals?
If you’d like to watch an interview with two parents, Lindsay and Dorothy, you can view it on TASP’s YouTube Channel:
https://www.youtube.com/watch?v=B2udDcEYW-0
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