Online Conversation with Parents

Two prevailing themes emerged. Panelists shared that they learned to advocate out of necessity and a feeling of responsibility because they know what it’s like to be a parent with a new and scary diagnosis and not knowing where to turn to get accurate information, a quality health care provider, and resources in their communities for support.

We held a webinar in early December 2022 with a group of mothers of children with developmental disabilities and invited only parents/caregivers to join us.

What drives people to advocate, and how can we build social capital within this community of advocates to improve the lives of children with developmental disabilities? Our conversation began with panelists sharing stories about what brought them to the place of advocating for not just their children but for all children with disabilities and what they think we can do as advocates to build a better network of support for kids and their families.

And they shared what it’s like when the same systems in place to help you are the ones that can be the most challenging to navigate. As one panelist put it: “It never made sense to me that the people that were in place to help you with your child are often the people that you fight the most.”

“We have to navigate care for the child that is not going to the doctor. We both work full time. While we have flexible jobs, neither of us have family or support systems in our community to watch our children when we have to take one to the doctor.” -parent response from the surveying project

And so, often, parents are the most knowledgeable about their child’s disease or condition due to selfeducation. They seek information and often learn “the hard way.” They may find themselves challenging authority figures, like doctors and teachers, which can be intimidating. It can be a lonely and isolating experience if parents have no support.

And, as panelists pointed out, if you’re new to the disability space and you go online to search for information, the data and information can be dated — even information posted on our own state government’s website. So, who do you trust? For many of our state’s advocates, it’s the parents. They are often honest and open about things that no one else will share — like how a provider’s staff may treat your family in their office or clinic, or struggles to communicate with a school’s Individualized Education Program (IEP) team. They can readily empathize.

One panelist said that due to the severity of her child’s prognosis and diagnosis, the only information she was sent home with after that initial doctor’s visit was about palliative care. The medical provider did not prepare her for any other outcome. Her daughter went on to live until age 11.

Another panelist shared that she was slow to learn about programs like Birth to Three because no one referred her to them or shared information about them, while another shared that she once took the growth chart used for Down syndrome children to her local WIC office because the staff there didn’t know that the growth rate for children with this syndrome was different.

That’s why finding support within the state from families who have had similar experiences — walked down the same paths — is so important. Programs and resources can be “best-kept secrets” because they’re not advertised or can’t be found via Google Search. But parents of older children know they’re there, as well as their capacity, cost, etc.

Clearly, younger parents value the insight of their peers, but like many other resources in our state, there are too few of them, and they deserve to be paid for sharing their time and expertise. Many volunteer to do this work.

“I have lots of recommendations, however, the biggest obstacle is, of course, money and personnel, money to purchase enough accessible vehicles and hire enough people, and also competitive wages to retain people that are hired and trained. In the world of developmental disabilities both are sorely lacking…” -parent response from the surveying project

Panelists agreed that there is an interest in the idea of capacity building, but in practice, there are significant challenges. Many parents are overworked and tired. Often, professionals, like social workers, are overworked, too. Panelists offered a few ideas for next steps to building a better network of support for families:

1. Show up. Yes, parents are overworked and often exhausted, but if you really want to build a bigger network, you have to follow through and show up if community or school meetings are supporting this demographic of kids in your area. Not every opportunity to improve the health care or public education systems involves litigation, legislation, or rallying. Sometimes, it just takes parents being present for meetings to articulate concerns.

2. Use social media. When used wisely, social media can be a great tool to help families coalesce around a shared issue or bring attention to or “call out” bad policy. While it can be tempting to air grievances, which may get you labeled as a “problem parent,” it’s also a great way to build local support. While many parents can’t afford a lawyer, most can use social media. Start a Facebook group. Message parents you see online sharing similar experiences, and make sure you connect with already existing groups. Don’t reinvent the wheel.

3. Find common ground. The term “developmental disability” is a blanket term encompassing several syndromes and conditions. While parents often look for detailed information on a specific health condition, it’s important to look at the bigger picture. Remember back in 2015 when hundreds of families and advocates rallied against changes to the Intellectual/ Developmental Disabilities Waiver, and in 2019 when they pushed to restore funding to the same program? These are great examples of a common cause creating social capital to bring about change. And it worked!

Under this big umbrella, we should celebrate diversity. The disability community is an incredibly diverse group. We should celebrate the differences in our diagnoses, geographic regions, age, ethnicity, etc. It’s a strength, not a weakness.

4. Parents must show up for each other, not just for their own issues. As one panelist said, “Until what’s happening to my child is as important to you as what’s happening to your child, we’re not going to be able to create a full network of support.” There’s power in numbers.

5. Pool resources. We need more funding streams to pay for what needs to be done to build a robust network of support for families. We know this. But if we learn to utilize each other’s strengths, we’ll go further in reaching this goal. And perhaps in the process, we’ll show funders how vital these issues are to our community.

6. Fund the people doing the work. For far too long, we’ve expected parent advocates to volunteer their time for advocacy work. Everyone has to put bread on their tables. If a group, organization, or institute of higher learning receives funding to support the disability community, and the project includes parent advocates, they should be funded for their work. It’s rare to see such expectations from volunteers outside of the disability community; this shouldn’t be so prevalent.

7. Invite allies to the table. Legislators, providers, government liaisons, and adults with developmental disabilities all have a place in this space. We should be prepared to have difficult conversations, knowing some groups may come to the table with territorial issues or recurring conflicts with other groups, and work through the discomfort, knowing that it won’t be easy work but worth it for generations of kids to come.