Chaotic care report ignores broader challenges of integrating the disabled

The latest article in the Chaotic Care series ("Disabled Minnesotans often live in costly isolation," Dec. 8) had the opportunity to continue the series' constructive look into the challenges Minnesotans with disabilities face in living their best lives. Unfortunately, several core issues were glazed over and some ignored in exchange for painting a negative picture of group homes where hundreds of Minnesotans in fact do receive the support and services they need for a high quality of life.

Minnesota's relatively large number of group homes is a result of having been one of the first states to close all state institutions housing people with disabilities. Beginning as early as the late 1960s and early '70s, Minnesota led the nation in a commitment to the community integration of people with intellectual and developmental disabilities. Minnesota closed its institutions, establishing the alternative of group homes as the most individualized and community-based support setting conceived at the time. To this day, Minnesota is one of only 17 states with no state institutions.

However, this history is just for context, because progress never stops. Fifty years ago, the list of options for community-based services was short. Today, group homes are part of a spectrum of residence and support options for people with disabilities. This is a great advance that offers the potential for people to customize the support they need with the independence they want.

I say potential because, as the article calls out, too many still lack access to those opportunities. Yet centralizing group homes as the problem is a disservice, and fails to address the factors that truly prevent more people from living their best lives.

The article failed to address the lack of affordable housing or discriminatory zoning ordinances and tenant policies, which limit options even in the most progressive of counties.

It failed to discuss how direct-support staff shortages covered in the article affect people in all housing situations, not just in group homes. Access to stable staff is a key factor in whether a person can have the confidence to live in a more individualized setting.

The article glazed over the central role of counties and case managers in supporting transitions to more individualized homes. As the ultimate administrators of waiver funding, they are not being held accountable for their responsibilities to ensure people can access the most independent setting possible.

In the overwhelming majority of cases, structural barriers like these take the choice and opportunity out of the hands of people with disabilities.

Finally, the article misleadingly stated that group homes are more costly than individualized services. Yet the scope of services being provided is drastically different in a group home setting. The majority of people living in group homes require some level of 24-hour support, while people living on their own are utilizing a fraction of that. Making this comparison is like suggesting that the retail store minute clinic is a better health care investment because getting a flu shot there costs less than a hospital stay for pneumonia.

This all boils down to two main points, which the article had the chance to make, but instead it focused on a handful of negative group home experiences.

First, group homes do not deserve the overall negativity portrayed by this article. While they are not the right setting for some, they are extremely positive options for others and exist on a spectrum of services designed to maximize a person's independence and avoid more expensive and restrictive care settings.

Second, lack of public awareness, or will to take action, on systemic issues is the root cause of why many who want to live in a different setting and have greater access to their community are not enjoying that choice. This must be addressed.

The services sector is shifting, with growing numbers of programs supporting a variety of living situations, from organizations using a combination of innovative tools, above-and-beyond resourcefulness, and in some cases, pure grit. Yet they are capped in their growth, not because there are too many group homes, but by inconsistent county administration and case management, lack of affordable housing stock and the demographics of those needing support outstripping those providing support by a factor of five to one.

We in the disability service sector have communicated these concerns to both state officials and the media. Opportunities for Minnesotans with disabilities to live lives based on their abilities will continue to be limited until we as a state stop looking for where we can place the easy blame and start taking responsibility for removing the real barriers.

Sue Schettle is CEO of the Association of Residential Resources in Minnesota (ARRM), an association of more than 200 organizations representing the Home and Community-Based Services industry.