Editor’s Note: This interview first appeared in Path Finders, an email newsletter from the Daily Yonder. Each week, Path Finders features a Q&A with a rural thinker, creator, or doer. Like what you see here? You can join the mailing list at the bottom of this article and receive more conversations like this in your inbox each week.
I sat down with Marsh Naidoo, a physical therapist, parent advocate, and founder of Raising Kellen, to discuss her family’s journey navigating cerebral palsy, the unique challenges that rural families of children with disabilities face, and what proposed Medicaid cuts could mean for access to care. Drawing on both her personal experience raising her son, Kellen, and her work as a healthcare provider, Naidoo shared why she believes advocacy, community, and policy are deeply intertwined, and why those conversations matter now more than ever.
The conversation has been edited for length and clarity.
Daily Yonder: Marsh, your son, Kellen, was diagnosed with cerebral palsy at 14 months old, and since then it seems that you have truly become a leading healthcare advocate, working as a physical therapist, leading the nonprofit Raising Kellen, hosting a podcast, and authoring the book “What I Wish I Knew Back Then.” Can you share a bit more about your journey from parent to advocate?
Marsh Naidoo: Kellen, my son, is actually now 14 years old! His diagnosis of cerebral palsy was confirmed at 14 months. It has definitely been a learning curve that is continuously in flux, with its highs and lows, all the way from birth to navigating the school systems and the healthcare systems. Now, with him turning 14, we’re looking at pre-employment choices and things that he might like to get into as he transitions into adolescence and then adulthood.
This is an extremely complicated system to navigate when you have a child with complex medical needs. The advocacy part came around when we [realized] that there were so many policies being shaped by legislators who didn’t actually know what it meant to be in the lives of families experiencing disabilities.
Part of that was us as a family bringing light to what our needs were and how there was a need for legislators to shape policy, which affected funding that filtered down from the federal to the state level, supporting the organizations that helped prop up the disability community.
In other words, we were trying to find out what supports my son could use in his everyday life that would make his life easier. I also realized that those supports were in a steady flux. Once you found something, boom, it changed. Honestly, this does not make any sense. It does not make any sense for families like ours, nor does it make sense for your average everyday person who is trying to live their life and raise their family.
We started sensing that if we didn’t actually speak up for Kellen and advocate for him, it wasn’t going to do him any good. Part of that advocacy involved communicating with other families and seeing that this lived experience transcended diagnosis. Whether my son was autistic or had Down syndrome or cerebral palsy, it did not truly matter because, at the end of the day, the supports he needed went beyond the diagnosis.
That’s how we got to starting the podcast, putting together events to bring our community together so that we could problem-solve and help advocate for legislation.
DY: You live in Dyersburg, Tennessee, in the northwestern corner of the state. How has living, working, and raising Kellen in a rural community shaped your family’s experience navigating healthcare and thinking about policy when it comes to children with disabilities?
MN: When I look at my rural community, first of all, I have to say I’m extremely grateful because this community has embraced our family and Kellen with their whole hearts. We are part of the community, and that integration and inclusion is there all the way from the school setting to church.
Having said that, there are some barriers in place. The first is having access to healthcare providers when it’s needed, at the right time and efficiently, without the administrative burden of going to one professional to then be linked up to another professional, and that whole chain of events that needs to happen.
Since Covid-19 things have changed with the option of telehealth. But the fact is not all rural communities are set up with broadband, nor is internet access always a given. I also see this in my experience as a healthcare provider. My physical therapy patients would rather come in to see me than communicate through a screen.
When it comes to pediatric care and the skill-building component needed between parent and child, say in Kellen’s case, I don’t think you can truly 100% integrate that through a screen. Some things need to be hands-on, with corrections made in an on-site setting.
Healthcare also does not happen in a silo. There are several things that need to integrate. You’re talking about food security, housing security, access to clean water. Healthcare and wellness are not just one thing that happens in isolation. Several factors need to be in place. I just want to draw attention to the fact that healthcare is not a single issue. It depends on various other things being in place for an adult to thrive and be physically well.
DY: Right now you’re airing a series about healthcare affordability and what Medicaid cuts could mean for families of children with disabilities. Based on those conversations, what are families and communities facing right now? What have you been learning, and how are providers, advocates, and other stakeholders responding to what’s coming on the horizon?
MN: Last year, the One Beautiful Bill Act put into motion what will eventually mean over a trillion dollars in cuts to Medicaid over a 10-year period. These are fiscal cuts, but how they’re going to affect services on the ground has not yet been determined because these changes in funding will only happen at the end of this year.
So what does it mean for families like mine, or families that depend on Medicaid, which is the largest healthcare payer source in the United States? We don’t know, and that is truly scary. Being the richest nation on earth, where 17% of our GDP goes toward healthcare, and not knowing you have healthcare security when you have a child with complex medical needs is frightening.
What I really need parents, or folks in general, to understand is that Medicaid supports about 50% of our kids under the age of 18.
I would encourage parents, or anyone who is not under a commercial payer, to check with their Medicaid representative. Families like mine often work in conjunction with a social worker, so check with your representative to see whether any possible changes are known at this time. There’s some speculation that there could be an increased administrative burden, but this is truly something where the end of the year will tell the full story.
DY: Marsh, you are both the parent of a child with a disability and a physical therapist, so you engage with these issues from both a provider angle and a family angle. How does that affect the way you’re anticipating what could come?
MN: I am a solo practitioner, so I work for myself, and when I don’t work, I don’t get paid. That’s the bottom line. I got into this profession because ultimately I want to do good. Looking at the policy changes over the last 10 years, when I spend 50% of my interaction time with a patient seeing the patient and the other 50% doing paperwork, that doesn’t make any sense to me. We have to problem-solve around payer sources.
We need to work toward something that gives us human dignity and removes the fear that comes from not knowing where we go if we get sick or, even if we receive treatment, being subjected to medical debt. That is really hard to get out of.
The human dignity of being able to go to a doctor when you need to is something we can’t take for granted. Our situation can change at any time. We could be involved in an accident that changes our ability to be mobile or affects our speech, and our whole world can change in an instant.
The security of knowing that I’m not going to be destitute, or that my family is not going to experience a life-changing shift in financial status, is very reassuring. I would like to see some kind of solution that works toward having one payer source and reducing the administrative cost and burden that comes with healthcare in the U.S.
DY: It sounds like there is a lot of uncertainty on the horizon for rural families, and you spend a lot of your time talking to these families and communities. What brings you hope right now?
MN: Honestly, my son brings me hope. My community brings me hope.
I think we do well when we place hope in our community because these are the people we’re standing shoulder to shoulder with during the difficult times we navigate. I’m a person of faith, so that brings me hope as well.
What brings me hope is knowing that this community is made up of fighters. We are not going to sit back. We are going to stand up and speak our truth. We are going to coordinate, motivate each other, pick ourselves up, and speak up not only for our kids but for other vulnerable members of our community. That’s what gives me hope.
This interview first appeared in Path Finders, a weekly email newsletter from the Daily Yonder. Each Monday, Path Finders features a Q&A with a rural thinker, creator, or doer. Join the mailing list today, to have these illuminating conversations delivered straight to your inbox.
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The post Q&A: Marsh Naidoo on Disability Rights for Rural Families appeared first on The Daily Yonder.
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