Press Release


WASHINGTON, Sept. 9, 2020 – Hospice Foundation of America (HFA) announced today that it was awarded a five-year, $399,483 grant by the Nancy Lurie Marks (NLM) Family Foundation that will focus on the needs of bereaved adults with autism.

“Hospice Foundation of America is grateful for this opportunity to provide resources to individuals with autism and their families, as well to the professionals who support them,” said Amy Tucci, president and CEO of HFA. “For too long, society has ignored the needs of people with autism, especially when it comes to grief and loss. We hope to change this sad reality by providing a highly accessible, online tool kit to help people understand that loss affects us all.”

The Autism Bereavement Project will involve a team of professionals, including Margaret Lynn Beaudoin-Kobb, MDiv, a staff chaplain at The Hospital of the University of Pennsylvania and Kenneth Doka, PhD, Senior Bereavement Consultant to Hospice Foundation of America, who is known internationally for his work around disenfranchised grief.

The outcome of the project will be a website that provides resources and information on grief and bereavement to adults with autism; their families and guardians; clergy, health and social service professionals, and counselors; and the autism community at large. Continuing education will also be offered through the website.

“Autistic individuals often are excluded from the rituals of mourning due to a well-intentioned effort to protect them. Families may not have the tools, language, or skills to be able to meaningfully support a loved one with autism who is grieving, and clergy supporting the family may not know how to interact with an autistic person. But thoughtful acknowledgement of grief and inclusion in the rituals of mourning are the most compassionate and effective ways to support anyone with autism who is bereaved, and this website will offer the tools to do that,” said Beth Zwick, NLM Family Foundation Program Officer. 

A project advisory board of prominent members from the autism and grief communities has been established. Members include: Bill Gaventa, MDiv, ‎Institute on Theology and Disability; Deborah Gonzalez, MSW, Pathways Center for Grief and Loss; Jill Harrington-LaMorie, DSW, LSW, The Chicago School for Professional Psychology and Rutgers University School of Social Work; Trace Haythorn, PhD, MDiv, Association of Clinical Pastoral Education; Mei Mei Liu, author; Ricki Robinson, MD, MPH, Descanso Medical Center for Development and Learning; Denise Rollins, PhD, Whole Heart Grief & Life Resource Center; Paula Shelley, PhD, artist and autism advocate; David Stevenson, MDiv, CT, Crossroads Hospice & Palliative Care; Serena Wieder, PhD, Profectum Foundation; and Beth Zwick, Nancy Lurie Marks Family Foundation.

HFA projects the website will be launched in the spring of 2021.
For information about the project, contact Amy Tucci or Cindy Bramble, project manager, of HFA at 202-457-5811 or info@hospicefoundation.org.
About the Nancy Lurie Marks Family Foundation
The primary mission of the Nancy Lurie Marks Family Foundation (NLM) is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism. In pursuit of this mission, NLM develops and provides grants to programs in research, clinical care, policy, advocacy, and education. 
About Hospice Foundation of America
Hospice Foundation of America (HFA) is a 501(c)(3) nonprofit organization and meets its mission by providing programs for professional development, public education and information; funding research, producing publications, and by providing information on issues related to advance care planning, hospice and palliative care, caregiving, and grief. HFA's programs for healthcare professionals are designed to improve care of those with terminal illness and those experiencing the process of grief and are offered on a national basis. For 38 years, HFA has provided programs for the public that are designed to assist individual consumers of health care who are coping with issues of caregiving, terminal illness, and grief.