Events and Membership 

Conference Program

PPT Presentations: For PPTs of each session, click on the name of the presentation below.

Full Conference Program, click here.

Flip the pages in magazine format -- for best results, use in full viewing mode, click here.

Conference At-A-Glance, click here.

Lifespan Respite Track, click here.

 Tuesday Evening, October 15
 6:00-9:00 pm   Ice Breaker Reception and Welcome Program
 Wednesday Morning, October 16
 9:00-9:15 am    Opening Ceremony
 9:15-9:30         Welcome to Boston
 9:30-10:00       Welcoming Remarks


Rosalie Edes, Assistant Secretary
Massachusetts Executive Office of Health & Human Services

Ann Hartstein, Secretary
Massachusetts Executive Office of Elder Affairs

       Elin Howe, Commissioner
       Massachusetts Department of Developmental Services

10:00-10:30   Keynote Speaker

Due to the government shutdown. Commissioner Lewis was unable to attend.

Sharon Lewis, Commissioner, Administration on Intellectual & Developmental Disabilities and Acting Principal Deputy Administrator, Administration for Community Living, U.S. Department of Health and Human Services   

In her dual roles, Ms. Lewis is an important spokesperson for individuals with intellectual and developmental disabilities in federal policy. From March 2010 to April 2012, Ms. Lewis served as the Commissioner of the Administration on Developmental Disabilities. Prior to her appointment as Commissioner, she served as the Senior Disability Policy Advisor to U.S. House Committee on Education & Labor, advising members of the Committee on legislative strategy and disability-related policy issues in education, employment and healthcare, and as a Kennedy Public Policy Fellow for U.S. Senate Subcommittee on Children & Families. Sharon is the recipient of numerous awards, including the 2010 Distinguished Leadership in National Disability Policy Award and the Consortium for Citizens with Disabilities Chairman’s Award.

10:30–11:00   Break
11:00–12:15   Workshops Session 1
Just click on the title of each session to link to the PPT presenation. Over 30 wonderful and enlightening sessions to view!

A Trail to Respite, Support, Education: Creating
Congregational Lifelines for Caregivers
Earl Shelp

Respite for Heroes at Home, Jed Johnson and Bette Ouellette 

Anchoring and Expanding a Service Delivery System for
Families and their Members with Disabilities through Respite Care
Linda Ellegard and Renae Isakson

Giving Your Communities the Freedom to Care: How a Little
Money Can Go a Long Way
Alicia Blater and Linda Kendall-Fields

The Freedom Trail to Respite: Your Roadmap to Caregiving
without Regret
Michael Bloom

Shared Session: Does the Crisis Nursery Model really work? University-Led External Evaluation: Findings on the Enduring Impact of Crisis Nursery Services on Child/Family and Foster Care Involvement and What Happened to You? Integrating Trauma-Informed Care into the Crisis Nursery Setting, Natalie Leeks-Nelson and Emily Shurilla

Overnight & Weekend Respite- Critical to a Family's
Paula Kavolius

 Wednesday Afternoon, October 16
 12:45–2:00  Lunch and Luncheon Speaker

Jonathan Evison, New York Times Best Selling Author  
 “The Revised Fundamentals of Caregiving” 

Jonathan Evison is the author of three award winning novels: The Revised Fundamentals of Caregiving, All About Lulu, and The New York Times bestselling West of Here. He has written for National Public Radio, The New York Times, The Wall Street Journal, and Salon. Critics have compared Evison to Charles Dickens, J.D. Salinger, and Thomas Pynchon, Sherman Alexie has called Evison "the most honest white man alive." In his teens, Evison was the frontman and founder of the Seattle punk band March of Crimes, which featured future members of Soundgarden and Pearl Jam. He lives on an island in Washington.

 2:30–3:45    Workshops Session 2

Got Respite? Ask-Plan-Do, Amy Clawson

State Plan for Respite - Partners: Mapping South
Carolina's Freedom Trail to Respite
Kathy Mayfield Smith and Susan Robinson

Outcomes and Evaluation of Respite Programs through the
Lens of Social Role Valorization (SRV): A Brief Introduction to SRV and its Impact on Meaningful Program Design and Evaluation
MaryJo Alimena Caruso and Melissa Enfinger

Veteran Directed Respite: Using Participant-Direction to
Support Veterans and Their Caregivers
Merle Edwards-Orr and Patrick O'Keefe

The Elder Care Cliff: Challenging Caregivers to Survive and Thrive Beyond the A.E.D. (adaptation, exhaustion, damage &
irrecoverable) Phases of Caregiving
Stella Nsong

Linking Families with Respite Providers: The Potential
of Matching Service Registries
Abby Marquand

 3:45-4:00    Break
 4:00–5:15   Workshops Session 3

A Revolution in Nebraska's Respite System- A Look Back and
a Journey Forward
Charlotte Lewis and Sharon Johnson

Collaborative Respite Care: A Team Approach for Children
and Adults in Families Coping with Serious Illness
Chris Frey and DiAnne Mueller

Ring-a-ling: Building a Statewide Resource Line to Support
Family Caregivers
Elizabeth Harris

Respite and Children's Behavioral Health
Needs: Families' Needs and Policy Considerations
Deborah A. Fauntleroy and Christina Fluet 

Leveraging Community Communications for Sustainable
Respite and Caregiver Support
, Jeffrey
A. Keilson, Ashley Hall and Alex Jean-Baptiste

Making the Link: Connecting Caregivers with Community
Mary Chaput and Jennifer Sloan

Community Connections - The Impact is Evident, Melissa Murphy and Carolyn Griffin

Enhanced Respite for Children with Autism and Behavioral Challenges - Program Development Considerations with Family-Centered Strategies, Sharon M. Francis

 Wednesday Evening, October 16
 Dinner on Your Own in Scenic Boston
 Thursday Morning, October 17

 9:00–9:30 am    Keynote Speaker

 "The Journey to Accountability Must Embrace the Path of Respite"

Richard C. Antonelli, MD, MS
Medical Director of Integrated Care
and Physician Relations and Outreach      
Boston Children’s Hospital
Boston, MA


Dr. Antonelli is on the faculty of Harvard Medical School in the Department of Pediatrics. He is nationally known as a member of the Project Advisory Committee of the National Center for Medical Home Implementation at the American Academy of Pediatrics. He served on the Steering Committee for Care Coordination at the National Quality Forum.  Since care coordination is so central to the effective transformation of the American health care system, Antonelli’s work has been used for both adult and pediatric health care delivery systems.
Rich has personal experience with respite care, both in terms of seeking and providing it to friends and for family members. His own experience with his Mother’s care served as the basis for a narrative published in the book, “Privileged Presence: Personal Stories of Connections in Health Care”.

 9:30-10:30 Lifespan Respite Plenary Session

 “Sustaining Lifespan Respite Programs: Successful Strategies in Economically Challenging Times” 


Moderator: Jill Kagan, Program Director, ARCH National Respite Network and Resource Center

Greg Link, Aging Services Program Specialist, Administration on Aging, Office of Supportive and Caregiver Services, Administration for Community Living, U.S. Department of Health and Human Services

Alicia Blater, M.S., APR, Family Caregiver Support Program Consultant, Lifespan Respite Project Director, NC Division of Aging and Adult Services;

Joyce Pohlman, Grants Coordinator, Access & Intake Division, Texas Department of Aging and Disability Services; and

Ellen Nau, Human Services Program Coordinator, Virginia Department for Aging and Rehabilitative Services, Division for the Aging


 10:30-10:45 Break
 10:45–12:00    Workshops Session 4

Respite Registries: Connecting Families with the Respite
Workers they Need. From East to West, Two states share their experiences
Elenore Parker, Jeffrey Keilson, Peter Van Voorhis, Sharon Kaiser, and Elizabeth Harris

Respite Now: Self-Care for Caregivers, Derik Newton and Emily Jean Davidson

On the Trail in Florida: One State's Approach to Family
Caregiver Supports
Jean Sherman

Prepare to Care: Training Resources and Support Options
for Informal and Formal Caregivers
Sue Pratt and Lisa Gurgone

Emergency Respite as a Service Delivery Option: The
Illinois Respite Coalition Model for Illinois
Lois Sheaffer Kramer

Lifespan Respite for All Ages: Priorities for Improving
Respite Services in Ohio
Miriam Rose and Linda S. Noelker

 Thursday Afternoon, October 17
 12:30-1:15 pm  Lunch
 1:15-2:30        Luncheon Respite Research Plenary Panel

Moderator: Emily Jean Davidson, MD, MPH, Down Syndrome Program, Boston, Children's Hospital

Judith G. Gonyea, PhD, Professor and Chair, Social Research Department, School of Social Work, Boston University

CĂ­rculo de Cuidado (Circle of Care): A Randomized Controlled Trial to Assess the Benefits of a Cognitive Group Behavioral Group Intervention for Latino Families Coping with Dementia

Joan Hyde, PhD, CEO, Co-President Massachusetts Gerontology Association, Ivy Hall Senior Living and UMass Boston Gerontology Institute

Freedom Trail to Respite Conference:Research Findings Concerning Impacts of Changes in Policy

Emily Kearns, PhD, President, Kearns Consulting

Respite Reframed


 2:30-3:00        Break
 3:00-4:15        Workshops Session 5

Coaching Family Caregivers Along the Freedom Trail to
Susan Robinson

Development and Implementation of a Coalition Strategic
Pat Luchkowsky and Jessica Hawk  

Freedom from Abuse: Addressing Risk & Response in
Leslie Atkinson

Experienced Respite Volunteers: Using Senior Companion
Volunteers for Respite
Jennifer Abernathy

Caregiver Characteristics Associated with Use of Respite
Care: Results from a Texas 2012 Statewide Survey
Alison Little and Kristin Christensen

Handout: Survey Instrument: Caregiver Survey

 4:30-5:00     Raffles and Closing Ceremony

Join us for the Closing Ceremony on Thursday, October 17 at 4:30pm in the Georgian Room! Fabulous raffle prizes include a Gift Certificate for a 2 night stay at the Regent Palms Turks and Caicos, an iPad and more! You must be present to win!

 Friday, October 18

Lifespan Respite Grantee and Partner Learning Symposium

(By invitation only for Lifespan Respite Grantees and Partners. Separate Registration Required)

7:30 am - 8:30 am Registration and Breakfast

8:30 - 3:00 pm   Presentations and Interactive Discussion





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