Provider Agency Finds HCBS Settings Rule Changes Work, Changes Lives

By Nick Filarelli

About the Author

Nick Filarelli is the program coordinator at Core Services of Northeast TN. Nick has spent the past 12 years as a direct support professional, weekend coordinator, and most recently as program coordinator.  Nick first entered the field with an agency whose program philosophy was to shelter and protect, so he has had a front-row view of the difference in the quality of life when individuals direct their own lives.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

For Core Services of Northeast TN, the Home and Community Based Settings Rule, which was issued by the Centers for Medicare and Medicaid, coincided with a time when the agency was already in a state of transition. A longtime executive director had retired in 2012, leading to a period of administrative turnover and agency chaos. In September 2014, with the HCBS rules still brand new and everybody struggling to figure it all out, Susan Arwood joined Core Services as the new director, and our transformative journey began.

Just a reminder, the HCBS settings rule says individuals must be integrated into the community—meaning that the people who receive services are able to spend time with other people who don’t have disabilities and have access to community services the same way that people without disabilities do.

We, like countless others, were struggling with HCBS settings rule compliance. Most of us at Core Services, which is based in Johnson City, TN, were relatively new to the provider network, but we recognized that this was the way things should have been done in the first place. Because after all, shouldn’t people have true involvement and participation in their communities? Should they not have the opportunity to work in unsegregated environments? To choose where to live, where to work, and how to spend their money?

We decided from the outset that rather than simply complying, we would try to live the philosophy: true community integration, true person-centered supports, and a culture that fosters these ideas. Because after all, people do not want “great services.” They want great lives. Through the journey, we learned a lot. Some changes we expected (or at least hoped for) and others took us completely by surprise.

The first step was ensuring that our administrative staff shared our philosophy. Change is hard, and so we inevitably encountered resistance. Some of the employees we started the journey with are no longer with our organization. However, when the dust settled, we were left with a small group of optimistic, idealistic leaders who believed in our mission and would work hard to achieve it.

Next, we went through the Council on Quality Leadership’s accreditation process and participated in the Department of Intellectual and Developmental Disabilities’ Person Centered Organization Initiative. These processes complimented each other well and proved invaluable in giving us the tools, resources, and supports necessary to make the transition to HCBS rule compliance and to create positive change. Through this experience, we developed better working relationships with conservators, independent support coordinators, family members, state agency partners, and each other. It was inspiring, informative, and a lot of hard work.

We enrolled our entire agency in the Person Centered Thinking class through DIDD. We trained more than half of our workforce, and counting, on Personal Outcome Measures (an interview process that examines 21 indicators involving the supported individual’s choice, health, safety, social capital, relationships, rights, goals, dreams, employment and more). We participated in the Person Centered Facilitation Process with every person that we support. This was a major investment, not only of time, but also of agency money. Consequently, we initially experienced a substantial deficit year, but we considered this a front-end investment toward an ultimate end goal. It would eventually pay off in a big way, not only toward improved lives and services, but financially as well.

Over the next several years, the result of these efforts was a mass cultural shift in our agency. The investment in training, the Person Centered Facilitation meetings, the enthusiasm of our leaders and stakeholders; it was all creating results. People were beginning to live self-directed lives. Dreams were being realized, people were finding jobs, lives were changing for the better. For many years, we had been great caretakers, but now we were on our way to becoming great supporters. As the results became more apparent, people believed in the mission even more strongly. The result was a snowball effect of change. Please take a few minutes to watch Susan Arwood describe the differences.

The unexpected results for the agency have been immense. As people became happier, negative or challenging behavior decreased. Staff were able to recognize the changes that they were making in people’s lives, and so direct support professionals enjoyed coming to work even more. As word began to spread, our staff turnover was cut in half, and our number of applicants doubled. This was a tremendous savings in overtime costs and training/hiring expenses, money that was reinvested in employee salaries and benefits and quality of services. Program enrollment also increased by 20% as people and families began selecting us as their service provider. The result was a budget year that more than made up for our initial investment.

Nearly four years later, and we have seen measurable change:

  • 65% decrease in people receiving facility based or segregated day services.
  • 40% decrease in human rights restrictions (restrictive measures, approved by a designated committee, that are in place to ensure safety). An example might be limiting access to matches or lighters for some individuals.
  • 175% increase in people working in competitive jobs.
  • A DIDD Quality Assurance review that went from required mandatory technical assistance to exceptional performance.

It has been a long road to get to where we want to be, and we certainly aren’t there yet, but good intentions and actions have positively influenced the lives of the individuals we support and the livelihood of our agency.

Thank you!

I want to thank Nick for sharing the story of Core Services’ learning process and transformation. I know the settings rule has created concerns for many in the disability community, and I’m delighted to hear of the benefits the rule has created. If you have questions for Nick or me, please email me at janet.shouse@vumc.org, and I will try to find answers.

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