By Evelyne Kane, Program Manager for Community Engagement
In our second edition of our Consumer Spotlight blog series we bring you these updates about recent work of three of the complex care consumers who make up our consumer voices bureau, Amplify:
In February, Mia Matthews co-led a roundtable learning session for participants of the National Center’s Student Hotspotting program. The session focused on consumer engagement practices and discussed: the importance of including individuals with lived experience early and often in the process of designing, implementing, and evaluating complex care programs; consideration of how organizations can build mutually-beneficial partnerships with consumers; and how individuals with lived experiences of complex health and social needs can use these experiences to become consumer advocates and advisors.
Mia shared her personal experience as the mother and caregiver of a child with complex medical needs. After a tragic experience of improper home care that led to the death of her young daughter, Mia’s loss propelled her to become an advocate, and to found the Chan’s Promise Foundation, an organization working in honor of her daughter to improve care for children with complex needs and their families.
Mia’s advocacy work has resulted in a proposed bill in the Maryland legislature to improve training practices for home health aides, as well as changes to hospital policies through her involvement in Patient and Family Advisory Boards. Mia also trains medical students and residents on how to support families through the process of loss and grieving. The roundtable session was a great opportunity to introduce the concepts of consumer engagement to students passionate about improving our systems of care.
Sara Reid, a health educator, support group facilitator, member of the Boston Healthcare for the Homeless’ Consumer Advisory Board and Board of Directors, as well as a woman of transgender experience, used her lived and professional expertise to co-facilitate an interactive roundtable session at the American Hospital Association’s Advancing Health Equity virtual conference. The conference, held from March 16th-18th, 2021, brought together a diverse group of stakeholders committed to improving healthcare through a focus on health equity.
In the roundtable session, Sara discussed how her experiences as a consumer, health educator, and community advocate had taught her the importance of person-centered care and authentic healing relationships. These values that can be applied to building interpersonal relationships of care, can, and should, also be applied to integrating authentic community voice into system- and policy-level decision making. Sara shared the authentic consumer engagement practices she had witnessed in her time at Boston Healthcare for the Homeless and as a member of Massachusetts Trans Women Leadership. After a presentation about her work, Sara helped to facilitate a conversation with other conference attendees about how consumer voices were currently informing their work, and how they hoped to strengthen their practices in the year to come.
Camden Coalition Community Advisory Board member Cisily Brown recently graduated from the Garden State Leaders Program! This program is a six-month long leadership and advocacy training opportunity for New Jersey residents with lived experience of homelessness and poverty. Throughout the training, Cisily learned skills in communication, story sharing practices, public speaking, advocacy, the legislative process, and how to speak with elected officials.
Cisily enjoyed the opportunity to connect with, support, and uplift the other people with lived experience in her program cohort. She felt that her participation in the program boosted her self esteem by instilling the understanding that ordinary people can speak to those in power, and that when community voices come together they can be a driving force of change.
During the program, she shared a personal account of workplace discrimination she had experienced as a person living with a mental health diagnosis to educate others about how employers can better support employees with disabilities. She hopes to use the lessons and skills gained through the Garden State Leaders Program to continue to fight for better care and services for people living with substance use and mental health disorders and those experiencing homelessness.
Partner with a consumer through Amplify!
Interested in learning how you can connect with one of our consumer experts for your next project or convening? Head over to our Amplify page to learn more about our work, and to request a speaker or collaborator.