NLCDD Bulletin

The HCBS Settings Rule has impacted the work of every leader in the disabilities service sector in the United States. And while this Rule certainly isn’t new (issued in 2014, originally set to go into effect in 2019, and delayed several times), it is complex to implement. This issue shares knowledge about the creation and rollout of the regulations from state and national systems leaders, advocate leaders, organizational leaders, and self-advocates. Read about how leaders in the field implement practices, innovations, and strategies related to the HCBS Settings Rule.

We know that culture impacts outcomes for the organization, for the employees, and for those who use supports and services in our system. Organizational culture sets the context for everything a company does. It is a shared set of beliefs and values that become prevalent and enforced through actions, structures, and other methods. This issue shares strategies for creating and nurturing a culture at your organization that promotes employee engagement and the best outcomes for those who use the supports and services of our system.

This issue focuses on how data can be used to promote everyday strategies to employ evidence-based practices in our organizations. In this issue, there are plenty of examples of how organizations use survey and anecdotal data to enhance services and advance organizational transformation efforts to ensure that their changes aligned with the wants, needs, and dignity of their workforce and the people they support. This issue also offers innovative tools to help organizations assess their structures, practices, and services, such as a quick resource guide to help access local, state, and national level data to help organizations stay up to date on trends in funding, services, employment, and outcomes for people with disabilities and their families.

We know that there is power in language but sometimes these concepts can lose their power and intention and become distorted in their meaning. Meaning can also be misconstrued when it comes to policy and practice. Many of our well-intentioned policies can be carried out in ways that limit choice and control for people utilizing services. In this issue of the Bulletin we explore the meaning of the words choice, control, and person and system-centered services, what the research shows is their impact on people’s lives and their relationship to one another, and innovative approaches to supporting practices true to their meaning. We discuss “language creep” or how these words lose their meaning when not supported by practice. We invite you to read the issue with an open mind and take some time to reflect on if your organization is walking the talk in its language and services.

This issue highlights some of the work and leadership practices that are intentionally and explicitly human rights-driven, with the hope that these will kickstart or remind you of your why. Included are first-person experiences from people with disabilities about how supports can facilitate or hinder rights, and from organizational leaders about lessons learned during the transformation of services. Read about promising efforts to promote the leadership, self-direction, and decision-making of people with disabilities and learn about strategies that meaningfully embed diversity, equity, and inclusion into day-to-day organizational practices.

Although we know that development of employees is one of the best ways to keep employees engaged, it is not always prioritized. How often do we think about our own development and our own leadership but forget those around us or who report to us? In his book Good to Great, Jim Collins advises to “get the right people on the bus, the wrong people off the bus, and then get the right people in the right seats on the bus.” What are you as a leader doing to get those right people in the right seats? How are you supporting them to have the right tools for their current positions but also the skills needed for the future? In this Issue of the Bulletin, we examine the strategies that leaders are using and can use to Look Ahead and Develop Leaders from Within.

The COVID-19 pandemic has fundamentally changed our workforce. People with disabilities, families, and professionals have experienced incredible trauma, hardship, and sometimes innovations and learning that will have lasting impacts on our organizations and services. The pandemic and current federal priorities also call attention to opportunities for workforce investment that we haven’t experienced to date. The topics highlighted in this issue require us to lead intentionally to meet the opportunities, demands, and challenges currently facing our workforce. The articles in this issue of the Bulletin provide examples, research, evidence-based practices, practical recommendations, and resources that can help you better understand the current workforce and inform responsive leadership approaches and strategies.

In this issue of the Bulletin, we explore chronic stress and trauma on leaders of disability support service organizations and on the organizations themselves as well as strategies that promote individual, organizational, and systemic well-being and resilience. We explore the paradox that organizations as well as individuals can be both struggling and embody hope, joy, and resilience. Topics in this edition include: Direct Support Professionals’ Perspectives on Workplace Support, Recognizing Stress and Trauma in Your Organization, Avoiding Burnout, and Tips and Tools for Helping Stressed Out Organizations.