Celebrating 6 Years of FCP

Six Years, One Mission: Walking Alongside Families

Reflections from Ashley Olthoff, Director of the Family Connector Program

This month, the Family Connector Program at the Down Syndrome Association of Minnesota celebrates six years of supporting and connecting families in our community.

When I stop and think about where we started and where we are today, I’m honestly a little speechless.

Six years ago, we were six part-time employees, a grant, and a dream.

We wanted to support families as they navigated the often overwhelming process of applying for programs and services for their loved one with Down syndrome. Our goal was to make complex systems easier to understand, connect families with vital resources, and, most importantly, ensure that no family had to navigate them alone.

We didn’t have all the answers.

We didn’t have a roadmap.

We just knew families needed someone in their corner.

So we built it.

We listened to families. We learned. We problem-solved. We collaborated. And when something wasn’t working, we changed it. Little by little, we built a system of support that has helped our families navigate more than 1,500 requests for assistance.

And the incredible part is that the program has continued to grow right alongside the needs of our community.

When the COVID-19 vaccine rollout began in 2021, our Family Connectors helped write hundreds of letters explaining that unpaid caregivers also qualified for the first rounds of vaccines. I still remember taking my first vacation in more than three years and bringing my laptop to the hotel so I could keep writing letters and helping families. We didn’t know what would happen, but we knew we had to keep showing up.

As we saw families approaching the transition to adulthood, we created our Transition to Adulthood Program. We worked alongside families, other agencies, and DHS to develop a checklist to help families prepare for the many changes that happen when their loved one with Down syndrome turns 18.

Then, when the first criteria for Down Syndrome Regression Disorder became available in 2022 and more research began to emerge, our team dove headfirst into understanding this new and often frightening diagnosis. We connected with local and national providers and made sure we were learning alongside the families we served. We wanted families facing this often devastating and uncertain challenge to know that they didn’t have to figure it out alone.

In 2023, when the state legislature voted to eliminate the parental fee for TEFRA, our team was one of the first disability organizations to get information out to families and help them understand and navigate the changes.

And in 2024, we took another enormous step forward.

We began working in collaboration with Down syndrome clinics, bringing Family Connectors directly into healthcare settings to connect with and support families. Today, our Family Connectors staff clinic days at the University of Minnesota, Gillette Children’s, and Children’s Minnesota, reaching more than 600 families each year through the clinics alone.

What started as six people with a grant and a dream has grown into a team of nine Family Connectors reaching hundreds of families every year through the clinics, while continuing to support families across Minnesota as they navigate disability services, healthcare, education, transitions, and so many other systems.

And then came this year.

When Metro surge and the governor’s audit of certain Medicaid services left families without critical resources and supports—and, for many, facing significant financial hardship—our Family Connectors jumped into action.

We helped families access our emergency financial assistance program. We connected families with additional resources. We worked alongside the DSAMn team to make sure families in our community had access to food, diapers, and other essentials.

Because that’s what Family Connectors do.

We figure it out.

We find another door when the first one is closed.

We celebrate the wins with families. We sit with them through the hard moments. And when the systems feel impossible to navigate, we help families keep moving forward.

Six years ago, we couldn't have known how much this program would grow—or how many families would come to rely on it. But we knew one thing from the beginning: families shouldn't have to navigate these systems alone.

And now, we’re looking toward what comes next.

We’re continuing to build support for families across the lifespan—expanding partnerships, strengthening connections for aging adults and their families, and creating more opportunities for caregivers, parents, and siblings to find information, reassurance, and community.

Over the past six years, we’ve built partnerships with medical providers, state agencies, and disability organizations. We’ve created programs that didn’t exist before and helped families find resources they didn’t know were available. We’ve answered questions, made phone calls, written letters, navigated systems, advocated, educated, connected, and reassured.

But when I look back, what makes me proudest is that we didn’t just build a program.

We built a place families can turn to when they don’t know what to do next. A place where they can find someone who understands. A place where we can say, “Let’s figure this out together.”

And while I’m incredibly proud of everything we’ve accomplished over the past six years, I’m even more excited about what comes next.

Because if six years ago we could start with six employees, a grant, and a dream—and build what we have today…

Just imagine what the next six years can look like.

The Family Connector team is deeply grateful to every family who has trusted us to walk alongside them, and we’ll continue to be here—listening, learning, and figuring it out together, every step of the way

Warmly,

Ashley Olthoff

Family Connector Program Director