The Challenges Faced By Moms with IDD and Mental Health Issues When Looking for Health Care
It can be hard to be a mom. But it can be even harder if you have an intellectual or developmental disability (IDD) and mental health issues and are looking for healthcare. Navigating the healthcare system can be difficult – especially when you face stigma and bias from healthcare providers.
We asked moms who participated in our Ideas Lab workshops about their lived experiences. They graciously shared their stories and gave us suggestions for improving healthcare and supporting moms with IDD and mental health conditions.
This blog post will highlight their responses as we talk about the challenges these moms face when looking for healthcare. We hope that this information will help improve things for other moms in the future.
The Challenges of Being a Mom with IDD
Intellectual and developmental disabilities (IDD) are a group of conditions that affect how a person thinks, learns, and behaves. They can impact any development area, including communication, social skills, and self-care. Some common examples of IDD include autism, Down syndrome, and cerebral palsy.
Moms with disabilities and mental health issues face a lot of challenges. Participants from the Ideas Lab workshops said that many healthcare providers have a stigma and bias against them. This can make it challenging to find good healthcare.
There is also a lack of education among healthcare providers about IDDs. This can lead to misdiagnoses and inadequate treatment. Finally, the lack of non-judgmental peer support can make it hard for these moms to find others who understand what they’re going through.
Related: 21 Ridiculous Reasons Moms’ Mental Health Wasn’t Taken Seriously
The Stigma Among Health Care Providers About IDD and Mental Health
The disability community is extensive and includes many different types of people. People with autism, Down syndrome, cerebral palsy, and many other conditions are part of this community. This community faces unique challenges, including stigma and bias.
For example, many people do not understand what autism is, and as a result, there is a lot of stigma around it. People may see it as a disorder that makes someone “different” or “weird.” Because there is so little education about autism, many healthcare providers may not be able to give people with autism the care they need.
People with Down syndrome often face stigma as well. Usually, this is because people think they all have an intellectual disability. This can lead to people making assumptions about their ability to take care of themselves and make decisions. It can also lead to discrimination in healthcare, education, employment, and housing.
When people have extra challenges with mental health, it can add to the stigma. This can keep people from getting the help they need and further discrimination. One example is the idea that people with mental health conditions are dangerous and unpredictable. This is not accurate and makes getting the right help even more difficult.
Miss Natasha, a mom with autism, said, “If you give moms with disabilities a real chance to articulate their holistic selves, then you’d be able to understand how to provide care for them better.” Simply listening to moms with an open mind during appointments, without assumption or bias, can make a world of difference.
The Lack of Education About IDD Among Healthcare Providers
Healthcare providers often don’t fully understand IDD. Tamara, a mom with cerebral palsy, says, “There is a tremendous lack of community education for health providers. In a way, I wish they could walk in my shoes for a week to see if their perspective changes.”
When asked about what health care providers can do when working with moms with IDD, Lindsay said, “Get to know our families and us. Maybe there are simple things that the providers can do to help us out, like talk to us in a different way, and in a way that we would like to be talked to.”
Accessibility to and in healthcare providers’ offices was also a theme. Many moms with IDD can have mobility issues that make it challenging to navigate a world designed for those who are able-bodied. More consideration for the physical support these moms need would go a long way toward improving their experience.
The Importance of Non-Judgmental Peer Support
Peer support is an important part of healthcare for mothers with disabilities and mental health issues. With peer support, moms offer each other emotional and practical help. This is helpful for people going through tough times because they can connect with others who understand what they are going through.
Additionally, peer support can also help to improve mental health outcomes by reducing isolation and increasing positive social interactions. It is a valuable tool that can help people cope with difficult life circumstances and improve their mental health.
Many mothers who attended the Ideas Lab workshops said it was important to find other mothers they could relate to. Creating a safe and non-judgmental space is essential for mothers to feel comfortable sharing their stories. This helps them feel connected and find strength in knowing that they are not alone.
Miss Natasha said, “Other moms could be more kind, more whole person centered.” By taking the time to listen to other moms and ask questions about their experience, instead of making assumptions, a community of trust and support can be created.
This blog post has shown you some of the challenges that moms with IDD and mental health issues face. Even though these challenges exist, we were inspired by the resilience of these moms. They are determined to find healthcare that works for them and their families.
If you are a healthcare provider, we urge you to keep an open mind and be non-judgmental when working with or caring for mothers with IDD. If you’re a mom with an IDD or mental health issue, know that you are not alone. There is support available, and we want to hear from you. Share your story with us at shannon@research4moms.com
Shannon Hennig is Program Director of the Maternal Mental Health Research Collaborative.