When I was growing up, our neighbors made the difficult decision to place their daughter with disabilities, my friend Hannah, at the state-operated Cambridge Regional Treatment Center. Seeing their struggle sparked my passion to make a difference supporting people with disabilities and their families.

In the days before and after my recent retirement, I’ve been thinking about how services for people with disabilities have evolved during my 40-year career. The families in the Star Tribune’s recent “Chaotic Care” series (periodic installments, September to December 2019) highlight the value of services and the importance of the work before us.

But the stories paint an incomplete picture of our progress.

Minnesota has a lot to be proud of.

I began my professional life as a special education teacher in northern Minnesota in the first public school classroom for students with significant disabilities. I was struck with the resilience and adaptability of families and their fierce dedication in advocating and seeking the very best for their children. I also saw the toll it took without support, respite or knowing what the future would bring.

I left teaching as the state began developing Medicaid “waivers” to pay for noninstitutional services for people with disabilities. I worked as a Carlton County case manager, developing home- and community-based services in our area. Later, I joined the state to coordinate a project to help people from regional treatment centers move back to their home communities. I went on to serve in various positions for Hennepin County and the state — most recently as the director of disability services for the Minnesota Department of Human Services.

Looking back, the one constant has been a vision of full inclusion for people with disabilities. That vision has driven tremendous change for the better. Before the waivers began in the 1980s, Minnesota had the nation’s highest per capita use of institutions. We now have extensive home- and community-based service options and public investments in the lives of people with disabilities.

In fact, Minnesota is just one of 15 states to have closed all large institutions for people with disabilities. More than 94% of people with disabilities who receive Medicaid waiver services live in community settings on their own, with family, in relationship-based settings, and in group homes. A variety of options recognizes that individual people have different needs and desires.

We have developed innovative options for services in independent and supportive living and seen a decrease in the proportion of people with disabilities living in group homes over the last decade. We’ve seen more people chose to direct their own services, including 23% of those using waiver services for people with developmental disabilities. We have improved access to home- and community-based waiver services and eliminated waiting lists; increased use of positive supports and reduced use of restrictive interventions; expanded home care services available outside of Medicaid waivers; and supported technology and modifications that allow people to be more independent.

Everyone — not just those using self-directed support options — should have a say in their services, where they live and what’s important in their lives.

We are on a journey to empower people with disabilities by expanding ways for them to have information, opportunities and experiences to inform their decisions. It also means the ability to design a plan reflecting what is important to each person that drives how services are delivered, and to make decisions that change over time. We are our own harshest critics, which drives us to become better.

We have improved consistency of services across Minnesota by setting statewide payments rates and service standards, and by establishing a comprehensive assessment. And we’ve started work for an overhaul of the state’s Medicaid waiver system, which will make it easier to understand options, know how much money is available to make decisions, and streamline and simplify program administration.

At the same time, we face complex challenges, including a lack of support workers, accessible housing and transportation. These realities mean we cannot use the same approaches that may have worked in the past.

Over the years, I have learned that amazing things can happen when people come together to make a difference. I’ve liked being part of the solution — even the messy parts. I am encouraged by the collaboration among talented, creative and passionate people — people with disabilities, families, providers, advocates, counties, tribes and within state government — to help every person with a disability live a fully inclusive life with purpose and belonging. I’m proud of what Minnesota has accomplished and look forward to what will be achieved next.

 

Alex Bartolic retired Jan. 7 as disability services director for the Minnesota Department of Human Services.