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technical reports

The One Care Implementation Council: Stakeholder Engagement within a Duals Demonstration Initiative

The Community Catalyst Center for Consumer Engagement in Health Innovation and the LeadingAge LTSS Center at UMass Boston jointly funded this case study review of the One Care Implementation Council. The One Care Implementation Council was established in 2013 to ensure stakeholders assume an active role in the implementation of Massachusetts’ Financial Alignment Initiative. In 2018, Collective Insight conducted a series of key informant interviews and a web-based material review with One Care Implementation Council stakeholders and authored the resultant case study. The report is intended to be a resource for policymakers, health care leaders, advocates and program enrollees nationwide who want to develop or enhance similar Councils in their own states.  

Factors Affecting Participant Engagement in the Design and Implementation of Public Programs: Lessons from Cash & Counseling 

Erin McGaffigan, Ph.D and Kevin J. Mahoney, Ph.D. co-authored this 2012 research issue brief from the National Resource Center for Participant-Directed Services (NRCPDS), in partnership with contributors Althea McLuckie and Molly Morris. The research issue brief summarizes the findings of a three-state in-depth study on participant engagement practices within Cash & Counseling programs.

Guiding Principles for Partnerships with Unions and Emerging Worker Organizations When Individuals Direct Their Own Services and Support. Service Employees International Union

This document by Erin McGaffigan, Ph.D., Bob Kafka, Tom Nerney, Kevin J. Mahoney, Ph.D., Mary Kay Henry, Kirk Adams, Leslie Frane, and Mike Oxford details the strength that may be garnered by a coalition of self-directed individuals and their direct support workers. The Guiding Principles listed are a result of a collaboration between ADAPT, The Center for Self-Direction, The National Resource Center for Participant-Directed Services, The Service Employees International Union, and The Topeka Independent Living Resource Center.

Participant Direction During Difficult Budget Times: A Toolkit for State Policymakers and Advocates National Resource Center for Participant-Directed Services  

Erin McGaffigan, Ph.D., in partnership with the National Resource Center for Participant-Directed Services (NRCPDS), worked with state partners, advocates, and program participants to identify key budget concerns that put participant direction at risk. This Toolkit, published in 2010, is intended to serve as a resource for informing decision-making during these difficult times.

Issue Brief: Do Participant-directed Workers Require the Same Training as Agency Workers? Using Research to Inform Policy

This issue brief, written by Erin McGaffigan, Ph.D. and published in 2009, explores the characteristics, experiences, and training needs of participant-directed workers and examines how such workers differ from agency-hired employees and provides training recommendations based on findings.

Discussion Paper: Redefining Quality: Participant-Directed Services. Rutgers Center for State Health Policy

This paper, developed by Erin McGaffigan, Ph.D. for Rutgers/NASHP and published by the HCBS Clearinghouse in 2008, explores the various participant-direction models, existing quality management strategies, and the potential for change that allows participant-directed quality management systems to remain true to the core values they were founded upon.

CPIGs Fly: Consumer Involvement within the Massachusetts Real Choice and Independence Plus Grants

This 2006 final report explores consumer involvement within the Massachusetts Real Choice and Independence Plus Grants, while reviewing the history and effectiveness of consumer involvement strategies. Erin Mcgaffigan, Ph.D. acted as the Project Advisor in partnership with Darlene O'Connor, Ph.D., and project leader Nicole Lomerson, MPH. Keith Jones, President of SoulTouchin’ Experiences, also assumed a leadership role in the production of this report

 

Webinars 

A Valid Voice: Virtual Seminar Series 

In 2018, Collective Insight, in partnership with the LeadingAge LTSS Center at UMass Boston and CJE SeniorLife, facilitated the PCORI-funded four-part Virtual Seminar Series to educate researchers on the benefits of engaged research, which are now archived and accessible to everyone interested.  

  • Seminar I introduced the concept of Stakeholder Engagement Research and reviewed assumptions and challenges with panelists Amy Einstein, Ph.D., Jen Brown, MPH, and Thomas R. Prohaska, Ph.D.

  • Seminar II recognized common challenges to engagement in research and discussed helpful solutions with panelists Amy Einstein, Ph.D., Rebecca Berman, Ph. D., Althea McLuckie, and Catherine Smatas, M.A. 

  • Seminar III explored the Bureau of Sages model and potential opportunities with panelists Amy Einstein, Anna-Liisa LaCroix, MPH, Margaret Danilovich PT, DPT, Ph.D.

  • Seminar IV provided a deeper dive on engaging frail elders and individuals from diverse backgrounds with panelists Amy Einstein, Ph.D., Keith Jones, Jane Karnes Straker, Ph.D., and Katherine Abbott, Ph.D., MGS.

For further information, articles, and resources on engagement, see the Valid Voice: Virtual Seminar Series Resource List.

Meaningful Consumer Engagement: Training The Consumer

In this webinar, supported through the Medicare-Medicaid Coordination Office (MMCO) in the Centers for Medicare & Medicaid Services (CMS) and hosted by Resources for Integrated Care, William Dean (Moderator) from Community Catalyst led a discussion in which Erin McGaffigan, PhD, MSW, MS, an expert in consumer engagement and training, presented on the approaches, tools and training content needed as consumers join their health care delivery system’s consumer advisory committee. In addition, Althea McLuckie, a consumer with extensive experience participating on an advisory committee, shared personal insights into the training and operating guidelines used to support and empower its consumer advisors.

 

Publications 

Understanding Power: An Imperative for Human Services

Chapter 11, “Cash & Counseling: Empowering Elders and People with Disabilities to Make Personal Care Decisions” co-authored by Erin McGaffigan, Ph.D., and Kevin J. Mahoney, Ph.D. explores how Cash and Counseling programs empower elders and people with disabilities to make personal care decisions.

The Oxford Handbook of Social Work in Heath and Aging, Second Edition

Chapter 8, "Approaches to Empowering Individuals and Communities," co-authored by Erin McGaffigan, Ph.D., Kevin J. Mahoney, Ph.D., Mark Sciegaj, Karen Zgoda, and Ellen Mahoney addresses how empowering individuals through participant-directed approaches is becoming more common at the micro, mezzo, and macro levels. 

Supporting People with Disabilities in Managing Individual Budgets: the Role of Support Brokers, 

Co-authors Erin McGaffigan, Ph.D., Emma Quach, and Darlene O'Connor describe the influence and importance of support brokers in self-direction in this Professional Case Management Journal article. 

Emergency Planning and People with Disabilities: Massachusetts' Lessons Learned

Co-authors Erin McGaffigan, Ph.D, Chris Oliveira, BS, Diane Enochs, BA, MA, address the importance of including the "special populations" of individuals with disabilities and the elderly in disaster planning and response.

Fighting a System Biased Toward Nursing Home Placement

Erin McGaffigan (née Barrett), Ph.D., explores her personal challenges in advocating for her grandmother while navigating the nursing home system in Massachusetts in this 2006 contribution to the Journal of American Geriatrics Society’s Clinical Trials and Tribulations column.

It's not so Simple: Understanding Participant Involvement in the Design, Implementation, and Improvement of Cash & Counseling Programs

While focusing on the experiences of Cash & Counseling states, this research provided a strong foundation for understanding and implementing meaningful and effective engagement practices in the design and improvement of a broad range of public programs and policies.

 

blogs

Marrying Patient Activation and Self-Determination For People With Medical And LTSS Needs

In this 2018 Health Affairs blog, writers Erin McGaffigan, Ph.D., Danielle Skenadore Foster, MSW, and Marc A. Cohen, Ph.D. explore how marrying patient activation and self-determination may impact people with medical and LTSS needs.

Consumer Engagement: A Call for Tools that Measure Organizational and Policy Level Engagement

Writers Erin McGaffigan, Ph.D., Danielle Skenadore Foster, MSW, and Marc A. Cohen, Ph.D. discuss the need for tools that measure the effectiveness of organizational and policy level engagement methods with stakeholders in this 2018 Community Catalyst blog,

Listening to Consumers and Advocates Who Helped Shape a Health Plan

In this 2018 LeadingAge LTSS Center @UMass Boston blog, writer Erin McGaffigan, Ph.D. explores the impact of listening to consumers and advocates who helped shape a health plan by interviewing members of the One Care Implementation Council and reflecting on their experiences.

What the Massachusetts One Care Implementation Council Teaches Us About Consumer Engagement

Erin McGaffigan, Ph.D., dissects what the Massachusetts One Care Implementation Council teaches us about consumer engagement in this 2018 Community Catalyst Blog.

 

presentations 

 

2018 Reinventing Quality Conference 

Baltimore, Maryland

Session: Self Direction: The Promise, the Future 

Presenters: David Huges, Human Services Research Institute; Erin McGaffigan, University of Massachusetts Boston/Collective Insight, LLC; Julie Schnepp, Mental Health Partnerships, Mollie Murphy, Applied Self Direction

Self-direction options have existed in Medicaid-funded long-term services and supports since the early 1970s. Today, every state in the US has at least one program with self-direction and many states have several. Self-direction has led to improved quality of life for individuals and caregiver satisfaction, and reduced nursing home and institution utilization in programs across the country. This session examined how self-direction delivers promise when utilized in new and innovative ways and for populations previously not formally served by self-direction, particularly persons with serious mental health conditions. A mental health services researcher and current self-directing participant shared their perspectives on mental health self-direction’s impact on individuals and systems. Further, this session examined the critical role of stakeholder engagement in designing services that meet the needs of the people they serve, providers of services, Managed Care Organizations, and states.

2013 Home and Community-Based Services Conference 

Crystal City, Arlington, VA

Session: Understanding the Factors of Participant Engagement in the Design and Implementation of Public Programs: Lessons from Cash & Counseling

Presenters: Erin McGaffigan, Ph.D., Researcher and Consultant, Boston, MA; Christina Battista, President, National Participant Network; Kevin J. Mahoney, Center Director, National Resource Center for Participant Direction, Boston College Graduate School of Social Work; Candace Ricard, Chief, and Toni Bennett, Program Manager, Medicaid Waiver Compliance Section, Louisiana Bureau of Health Services Financing

Federal funders often require that individuals in need of services be engaged in the design of public programs, and this expectation is recently evident in the newest acute and long-term service and support models found within the Affordable Care Act. This workshop summarized the findings of a three state in-depth study on participant engagement practices within Cash & Counseling programs. The programs examined were diverse in length of existence, enrollment size, populations served, and engagement practices. According to this research, multiple factors influenced the perceptions of state employees, advocates, and program participants pertaining to the meaningfulness of engagement and its related outcomes. Various person, process, and environmental factors influence outcomes, whether they are positive or negative.