HHAeXchange’s Demystifying Disability series was inspired by a fireside chat with Ellen and Emily Ladau, a mother-daughter duo who have the same physical disability – Larsen syndrome, a disorder that affects the development of bones throughout the body. In part two of the series, we hear from Ellen and Emily about shifting perspectives around disabilities, and technology’s impact on their homecare experience and daily lives.

How has technology impacted the way that you interact with the world?

Emily Ladau: I think technology has opened up the world for us in so many ways and a lot of that has become even more evident during the pandemic. Whereas disabled people have been advocating for years to have access to working remotely, to attending school remotely, to joining in on cultural and socialization events through the computer, that was denied to us previously, (or given only to the privileged few). Now it has become the norm.

In the beginning of the pandemic, everyone suddenly had access to this thing that used to be limited to a few people who happened to have the privilege to be able to work from home. I had been advocating for myself, and I had asked if I could work from home well before the pandemic, because I wasn’t really driving at the time and I still wanted access to the workforce. I’m very lucky to say that I had employers who were willing to accommodate me.

I’m working remotely in New York for an organization called Rooted in Rights, which is based in Seattle. We just published a blog post about someone who is currently embroiled in a battle over receiving the proper access to the homecare services she needs so she can get to and from the workplace. Without having those homecare services in the morning to get her ready to go to work and start the day, how is she going to be able to work? Of course, working from home is a silver lining to COVID, but homecare does empower people to leave their homes. We need to celebrate it from both angles.

Ellen Ladau: If Emily’s care wasn’t home-based, how would I have been able to get her to those services? Homecare fills a critical need.

Technology is changing the industry. When I was a homecare coordinator, my version of electronic visit verification (EVV) was making random phone calls to patients’ houses to make sure that their healthcare provider was there. Technology like EVV enhances patients’ safety. It minimizes insurance fraud. It’s a game changer.

Despite all the benefits of homecare, the industry can be difficult to navigate. How has the level of services and care improved over the years?

Ellen: When Emily was born, she was in the NICU (Neonatal Intensive Care Unit) for about ten days. After she came home from the hospital, her legs were casted, and out of the blue I got a call from a public health nurse. He told me that Emily was at a high risk of learning disabilities because children learn by movement and she has a movement disability. He asked if I would like to have her evaluated for services, and I was like, yes, absolutely yes! Any help that could be provided to her I happily accepted. I hadn’t even known that these services were available because it’s not something I had growing up.

Emily: I do want to clarify that at the time when my mom got the phone call that I was at risk of learning disabilities, I don’t think there was that societal understanding that having a child with learning disabilities doesn’t need to be viewed as a tragedy. There was this stigma and these stereotypes that drove a lot of the conversation around providing early intervention services but really, early intervention is something that we should look at as beneficial. It doesn’t necessarily need to “change” or “fix” who your child is, it just needs to be there to support them and give them the tools to live the best possible life that they can in their own body and mind.

I feel so lucky that I was set up with these early intervention services. I have them to credit for where I am now because I think if I didn’t have them, I wouldn’t have physically been able to thrive in the way that I have. But at the same time, it’s always a fight. It’s always a fight to maintain these services, it’s always a fight to keep them active and to justify why you need them. There’s a lot that goes on behind the scenes to maintain these services.

Ellen: It is a lot of work, and I’ve ended up drafting a lot of letters of medical necessity for doctors to sign and put on their letterhead. It’s a full-time job.

With Larsen syndrome, there can sometimes be abnormalities with the hands, making it difficult to write. Technology can certainly aid with communication in those cases.

Emily: There’s so much power in that, in being able to communicate in the way that works best for you because technology empowered you to do so, whether that’s writing by hand, typing, or using voice to text dictation.

Other forms of technology like wearables, or emergency call necklaces, are also powerful. Having access to someone at the push of a button, but not always having to have someone right next to you, is a form of fostering independence. There are so many worlds that technology has opened up for people with disabilities.

Stay tuned for the final article in this series next week! In the meantime, be sure to check out Emily’s book, Demystifying Disability, which just landed on NPR’s 2021 Books We Love List.