Center for Public Representation (Northampton, MA). Funding from Health Decisions Resources (HDR) will help the Center for Public Representation (CPR) develop an information and education campaign to ensure that people with disabilities understand the benefits and risks of the COVID vaccine, and can make an informed choice about this critical treatment. The project report, recommendations, and publications will be based upon substantial input from persons with disabilities, their families, providers, and support persons from eight representative organizations.
CPR will create a ‘Know Your Rights’ report on informed decision-making for COVID-19 vaccines. The report will include suggested best practices on informed choice conversations and decision making. It will be widely disseminated to CPR’s COVID-19 partners, to the organizations which participate in the listening sessions, to the Massachusetts legal services community, and to the 50 federally funded Protection and Advocacy programs nationwide. CPR will post the publication in its website, and its specialized Supported Decision-Making website, and organize and present a webinar to explain the suggestions in the paper. An included “Know Your Rights” sheet that can be translated into other languages will connect readers with trusted sources of information, and assist them in navigating the decision-making process. (12/2020) See: http://centerforpublicrep.org
Asian Focus (Cary, NC) is a 501(c)(3) nonprofit volunteer organization that promotes, sponsors and supports programs to help Asian Americans and immigrants of all generations. It encourages participation from agencies and skilled professionals, and promotes education, diversity and cultural exchange services for all underserved groups. Funding from Health Decisions Resources (HDR) will help Asian Focus further develop its ‘Project Unity,’ an innovative community partnership effort to provide personal protective equipment and education to clinicians and other care givers, senior centers, emergency responders, local businesses, and local food pantries. The aim is to slow the spread of the COVID-19 virus by harnessing and stimulating long-term volunteer support and community engagement. Through ‘Project Unity,” Asian Focus will continue to partner with appropriate community-based organizations and agencies with the goal of being a successful demonstration project that could be duplicated elsewhere throughout North Carolina and beyond. (2020) See: https://www.asianfocusnc.org/covid19-project-unity
Volunteers in Medicine Berkshires (Great Barrington, MA) is a nonprofit agency that serves culturally diverse, uninsured, and low income residents of northwest Massachusetts. More than half of all patients are immigrants. All medical and dental care is provided by volunteer physicians, dentists, student clinicians, and community health workers. Funding from Health Decisions Resources (HDR) will allow Volunteers in Medicine Berkshires to strengthen and formalize its orientation program for all providers, staff and students by developing materials that are cultural appropriate to the diverse population served VIM. Developed by agency clinical staff augmented with retained consultants, the innovative program will be piloted with 40 – 50 people in the first year, assessed and revised as necessary, and fully implemented thereafter. (2019)
North Carolina Health News (Chapel Hill, NC). Health Decisions Resources will continue its support for NCHN’s innovative “Generations Beat” which focuses on health care issues as they occur along one’s lifespan and their impact at different age milestones. A continuation grant from Health Decisions Resources will fund approximately half of this position for a second year, that is, be the primary sponsor of 25 stories. Since its inception in early 2018, “Generations Beat” has helped boost readership of the NCHN online “Headlines Newsletter” significantly: the average 76,000 pages views per months represents a 40% annual increase. Half of newsletter readers identify as members of the health care community, and the balance are from the general public. NCHN believes that the increased visibility will result in additional sponsors and more consistent renewals of support. NCHN intends that “Generations Beat” will become less dependent on grant funding and increasingly more self-sustaining through formal sponsorship and underwriting. (10/2019)
The Center for Prisoner Health and Human Rights (Miriam Hospital, Providence, RI). The Center will gather existing state-level data to illustrate the barriers Rhode Island communities face in achieving successful reentry and health outcomes of justice-involved Rhode Island citizens and identify data gaps that prevent the state from making informed system reforms. The Center will also take a point-in-time approach and chronicle the experiences of justice-involved Rhode Islanders vis-a- vis the social determinants of health. A resulting report (and accompanying issue brief) of the data—the first of its kind in the state—will be made available in print and on-line. The Center will disseminate the documents to people, agencies and organizations interested and invested in the health and well-being of justice-involved populations statewide, including public health, behavioral health, and medical providers; community based organizations; and other stakeholders. (9/2019) https://prisonhealth.org/
Vermont Ethics Network (Montpelier, VT), for ‘Taking Steps Vermont.’ The goal of this innovative project is a three-pronged education and quality improvement advance care planning (ACP) effort in the Central Vermont healthcare service area. Through a collaborative partnership with a wide group of stakeholders, the strategy includes (a) public awareness and consumer education about ACP and the tools available to document health care decisions, i.e., advance directives, DNR/COLST orders, the Vermont Ethics Registry; (b) provider values-based communication training; and (c) ongoing facility-based electronic medical record documentation improvements.
The program aims to empower and support patients to take a proactive role in planning for their future health care needs (‘Taking Steps Vermont’), while simultaneously training health care professionals to have effective conversations at times of serious illness (‘Talk Vermont’). The program will also work with local health facilities to streamline and clarify the process of producing and retrieving ACP information stored in electronic health records. (9/2018)
North Carolina Health News (Chapel Hill, NC). Grant to North Carolina Health News, an online health news site, to pilot a “Generations Beat” which will look at health care issues as they occur along one’s lifespan and their impact at different age milestones. A part-time reporter will focus on issues affecting children/youth and aging/older adults. The grant from Health Decisions Resources will fund half of this position for a year, that is, be the primary sponsor of approximately 25 stories during the year. The Generations Beat reporter might investigate the rate of suicide in elderly men, or assess how well hospitals in North Carolina are managing the transitions that seniors make from hospital to home after receiving treatment. On the younger end of the life spectrum, he might see at how well a law aimed at helping families who have children with autism pay for treatment is actually working. North Carolina Health News provides accurate, in-depth journalism that informs, educates, and stimulates discussion in the public forum so that citizens, health care professionals and legislators in North Carolina can make informed decisions about their health care and the state’s health care system. (2/2018)
Citizens for Safety, Inc. (Boston, MA), to support the LIPSTICK project–Ladies Involved in Putting a Stop to Inner City Killing. The funds will be used to develop, in cooperation with a group of male inmates at MCI Norfolk prison, a series of videos disclosing how the men convinced women and girls to straw purchase, hide, hold and carry guns for them. LIPSTICK will use the video series to educate and warn hundreds of vulnerable women and girls in Greater Boston through outreach to after-school programs, community centers, beauty salons, church breakfasts, and more. The videos will also be available online, making them available to health and safety organizations nationwide.
The goals of video project will be to
• increase the number of community residents who understand that straw purchasing, hiding and holding guns illegally are serious crimes with devastating consequences for the community;
• increase the number of leaders engaged in disrupting illegal gun pipelines, especially involving women and girls; and
• reduce the willingness of women and girls to engage in high-risk behaviors with guns. (5/2017)
Behavioral Health Task Force for Persons who are Deaf, DeafBlind and Hard of Hearing (Pittsburgh), a voluntary association of health care providers and consumers. The Task Force first convened in 2004 following a series of community focus groups that highlighted the need for increased on-line awareness of services available to persons who are Deaf, DeafBlind and Hard of Hearing in Western Pennsylvania. A subcommittee of the Task Force, operating with little funding since formation in 2009, has developed a robust and highly useful website at http://healthbridges.info. The committee’s intent is to encourage effective communication between healthcare providers and patients by educating both about individual perspectives, rights and obligations in the healthcare setting. Funding will support an 18-month effort to increase the number of educational videos (all translated into American Sign Language – ASL) available on the group’s website. Among topics to be considered are: the appropriate use of video interpreting in the health care setting; making the most of one’s health care appointment; resources for deaf persons with intellectual disabilities; and the role of support personnel for DeafBlind persons. (5/2017)
North Carolina Health News (Chapel Hill, NC). Funding to support ‘Lives on the Hill,’ an oral history project of North Carolina Health News. Through recorded interview with former residents, families, staff, and members of the public, the project will help commemorate the Dorothea Dix Hospital–a 300-acre residential psychiatric hospital which served central North Carolina from 1856 to 2010, and is situated just a short walk from downtown Raleigh. The city of purchased the property from the state in 2015 and intends to convert the property to a public park with the guidance of a Conservancy. The enabling legislation required a suitable memorial for the institution. ‘Lives on the Hill’ is convening all stakeholders in a public discussion of the importance of the institution in the lives of so many families. HDR’s grant supports production and live-streaming of the event by UNC TV, the local public broadcasting station. (8/16)
Massachusetts Health Decisions. Funding to support the development of an American Sign Language version of the Massachusetts Health Care Proxy, including rewriting assistance of a certified sign language interpreter at Gallaudet University, and video recording (with captions) of an ASL translation. Video of the Proxy and related materials will be available for viewing and linking on the website of Massachusetts Health Decisions. (Fall 2016)
Adaptive Design Association, Inc. (New York). The mission of the Adaptive Design Association (ADA) is to ensure that people with disabilities receive the custom adaptations they need to fulfill their developmental, social, academic, and vocational potential; and to instigate widespread replication by providing a full range of hands-on education, from basic introduction to rigorous apprenticeships, for people wanting to establish Adaptive Design Centers within their schools, organizations, and communities across the globe.
In partnership with Quality Services for the Autism Community (QSAC), ADA has designed an innovative program to provide an employment training experience for young adults with disabilities. The program also provides a training / mentoring experience for pre-vocational occupational therapists through highly specialized fieldwork. The goal is to train young adults with autism to work in a supervised setting to create individualized adaptive equipment for children with disabilities. Participants with autism will commit to the training program for minimum of 1 year, participating twice a week for a total of 8 hours. ADA will provide hands-on training to both the advanced-fieldwork occupational therapy interns and supervisors so they can better train and mentor young adults with autism. Funding from Health Decisions Resources will help ADA offset the costs of supervising and mentoring the pre-vocational interns. (7/16)
A 2015 grant to ADA supported five university students participating in the Adaptive Design Association Summer 2015 Made To Learn Internship Program. Participants spent three months developing skills in adaptive design, custom fabrication, and teamwork while they create custom adaptations for children in New York City. Graduate and undergraduate students represented the fields of physical and occupational therapy, social work, education, industrial design and engineering.
Wake Up to Dying Project (Montpelier, VT). HDR supported a 4-day Traveling Exhibit of the Project held in Somerville, Massachusetts, September 2015. HDR also made an in-kind contribution of Massachusetts Health Care Proxy forms and materials for public distribution; and participated in a panel of professional resources on end-of-life planning. The Wake Up to Dying Project aims to shift our cultural perspective on death from fear and avoidance toward familiarity by inviting people to acknowledge death, be prepared for it, and live more fully for having done so. It does so by gathering and sharing first person audio stories about death, dying, and life. It brings these stories, along with related art, hands-on engagement opportunities, and workshops to communities in a creative traveling exhibit. Visitors to the Traveling Exhibit can listen to audio stories about death, dying and life; explore end-of-life resources from organizations in their community; attend a workshop or community discussion with local leaders in end-of-life care; add their “bucket list” goals to a massive chalkboard; and bring what they learn and experience back to their home and community.
Camp Sunshine (Sebago Lake, ME) provides respite for children with life-threatening illnesses and their families. The year-round program is free to all families, and includes 24-hour onsite medical and psychosocial support. Camp Sunshine also provides bereavement sessions for families who have lost a child to supported illnesses. The grant from Health Decisions Resources was used to make the Camp´s services better known among appropriate clinicians and health care organizations, and supported a May 2015 conference to help cancer patients and their parents with emotional and educational needs during the post-treatment period. (1/15)
Jewish Family Service of MetroWest (Framingham, MA). The grant from Health Decisions Resources supported development of specialized on-line training for volunteers in the JFS-MW “Patient Navigator” program. Patient Navigators are volunteers specially trained by JFS-MW to assist frail seniors in the MetroWest area with their visits to physicians and other clinicians. Training currently includes both didactic and experiential learning, as well as personal mentoring, about stages of aging, effective clinician-patient interactions, and practical ways to maximize a senior’s clinical visit. (1/2015)
Franciscan Children´s Hospital (Brighton, MA), specifically for the Joyce Reardon Nursing Education Fund. Until her death in 2012, Dr. Reardon was the Director of Nursing Education and Coordinator of Behavioral Health Services at Franciscan. She earned a degree in Nursing from Salve Regina University, a Masters in Psychiatric Nursing from Boston College, and in 2011 a Doctorate of Nursing Practice from Regis College. The grant from Health Decisions Resources will support nursing education that enhances the relationships among patients, their families and the clinicians who care for them, and to support a team-building program for special unit nurses. Franciscan Hospital provides care for children with special health care and educational needs. (1/2015)