Advocacy didn’t start as a choice for me. It started the day I became a father.
When my daughter was diagnosed with autism, I entered a world that so many families know all too well — meetings, evaluations, services and systems that require you to share deeply personal information just to get your child the support they need. You learn quickly that access often comes with a cost: your child’s data.
And you trust that it will be protected.
But today, families are asking harder questions. Where is that information going? Who has access to it? And how much control do we really have once it’s shared?
These aren’t abstract concerns. For parents like me, they are real, immediate, and deeply personal.
Recently, Pennsylvania took action to address those concerns. Gov. Josh Shapiro signed executive orders to limit how disability-related data is collected and shared, making it clear that sensitive personal information should not be distributed beyond what is legally required.
Maryland should take notice.
To be clear, Maryland has taken steps in recent years to strengthen general data privacy protections. But there is still a gap when it comes to disability-specific data and how it is shared across systems.
Because here’s the truth: families are already stretched thin navigating education systems, healthcare providers, and government programs. We shouldn’t also have to worry about whether our children’s information could be misused, over-collected, or shared without our full understanding.
Data can open doors, but it can also expose.
For children with disabilities, the stakes are even higher. Misused or poorly protected information can lead to stigma, bias, or missed opportunities. And for Black families, who have historically faced inequities in education and healthcare systems, trust is not automatic — it must be earned and protected.
That’s why Maryland must act.
We need clear, proactive policies that:
– Limit data collection to what is truly necessary.
– Ensure families know how their information is being used.
– Protect against unnecessary sharing across agencies.
– Include parents and advocates in shaping these decisions.
This is not about fear. It is about responsibility.
As a father, I will always advocate for my daughter. But as a community, we should not have to fight individually for protections that should already be in place.
Pennsylvania chose to act. Maryland now has a choice to make.
Will we protect our families, or wait until trust is already broken?
For me, the answer is simple.
Because advocacy didn’t start in a policy meeting. It started at home.
And that’s exactly where this issue belongs.
Anthony Tilghman is a Prince George’s County father, photographer, nonprofit leader and community advocate. His book “When Advocacy Becomes Parenthood” is available on Amazon.
