The Education Committee was created to provide information to members of NAHAC that will aid in their advocacy of patients and increase their awareness of new and current topics of interest. The group has also been charged with supplying educational Information to the public.
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Preventable hospital hazards claim almost 300,000 lives in America every year. Almost 4 million more hospital patients are harmed. Most of these deaths and injury are among older patients, and most result from a strained health care system seriously short on nurses and other critical resources. Karen Curtiss, a national patient safety advocate and Founder of CampaignZERØ™ discusses how common hospital hazards occur, what is being done at the national level to improve patient safety, and how her organization's checklists can help families and advocates safeguard their patient's care in the hospital.
Ms. Pat Felice has been an educator and advocate for persons with dementia and their family care providers for over 10 years. As the former Family Services Director at the Alzheimer's Association of Colorado, Pat helped raise awareness about Alzheimer's disease and provided education, support and services to family caregivers, professionals and the general public. Pat has a B.A. in Communications and currently lives in Salt Lake City.
In her own words:
"The challenges of caring for a person with Alzheimer's disease are greatly misunderstood and underestimated by our society. Unless one has been personally impacted by the disease it is difficult for them to comprehend the physical, emotional and financial turmoil Alzheimer's can have on a family. With the benefit of easy access to information and services the burden can be lightened. Unfortunately, many people do not seek assistance and struggle alone due to the persistent stigma and ignorance about the disease that continues to prevail. Education and advocacy are imperative if we are to offer help to those currently diagnosed and hope for a cure in the future."
Beth van Bladel founded Capital Region Patient Advocacy in Albany, New York in 2008 with a grassroots mission of teaching healthcare advocacy and navigation skills to her community. She developed a collaborative resource network of over 100 capital region healthcare experts to create healthcare navigation tools. The tools discussed in this podcast can be found in the Resources section of her website www.capitalregionpatientadvocacy.com and may be used by obtaining permission from Beth.
Richard Heasley is the Executive Director of Conard House, Inc., an organization which encompasses a spectrum of programs and services designed to support, rather than direct, recovery from mental illness. He has been Executive Director of Conard House for over 16 years, and has worked in the nonprofit human services sector for more than 35 years, providing executive leadership and financial management. Richard is a member and past President of the San Francisco Mental Health Contractors Association, the Steering Committee of the San Francisco Human Services Network, and the Executive Committee of the Supported Housing Employment Collaborative. He holds a BA in Philosophy, Wittenberg University, Springfield, Ohio; Master's in Public Administration, California State University, Hayward, California.
This discussion covers important aspects of healthcare advocacy for individuals with mental illness including resources and tools, roles for advocates and what the future holds.
Kevin Knauss is an independent Health and Life Agent in California representing several carriers for Medicare plans, individual and small group insurance. He does not believe an agent should represent only one company because "one size does not fit all" when it comes to health insurance. Kevin has blogged extensively about healthcare reform, Medicare topics and his occasional travels through California.
During this teleconference session our speaker addressed the following topics:
Healthcare Reform Affordable Care Act and its effects on:
2. Business/ employees
3. Medicare beneficiaries
The NAHAC Education Committee proudly presents Dianne Savastano, BSN, MBA, the Founder and President of Healthassist, a personal healthcare consultancy established in 2004 and based in Manchester-by-the-Sea, MA. Healthassist offers expert help in demystifying healthcare and medical insurance and offers services that help people of all ages navigate today's increasingly complex healthcare system. Dianne has over 30 years of healthcare experience and understands both the clinical and insurance perspectives. Before launching Healthassist, she worked as a nurse providing direct patient care, in hospital management, and in high-level positions in managed care, insurance, employee benefits and business consulting. Dianne was one of the founding members of NAHAC and currently serves on the board of directors as Treasurer.
As individuals approach the age of 65 and sign up for Medicare, they are often surprised and overwhelmed by the 20-40 choices available to them. Comparing one to another is a challenge.
The objectives for the teleconference session on "Medicare Choices" are:
1. Gain a deeper understanding of how the options in Medicare evolved
2. Understand what traditional Medicare covers and does not cover
3. Learn the differences between Medicare Part A, B, C, D and Medicare supplemental/medigap insurance plans
4. Identify preferences
5. Make decisions if you remain employed after age 65
6. Review your choices on an annual basis
Susan Turnbull founded Personal Legacy Advisors in 2002 out of great respect for the ancient ethical will, and has become an internationally known advocate for non-binding personal legacy documents as a meaningful component of estate, financial and philanthropic planning. A former journalist, she has ghostwritten and edited numerous ethical wills and personal histories, is the author of The Wealth of Your Life: A Step-by-Step Guide for Creating Your Ethical Will and co-author of Between Generations: A Five Step Guide for Creating an Expression of Donor Intent. She is also the creator of LifeLegacy Cards, prompts for insightful conversation and writing.
Susan is a graduate of Colby College and the parent of three young adult children. She and her husband live in greater Boston.
Your wealth and your legacy have both tangible and intangible dimensions.
During this session our speaker addressed the following topics:
Dr. Julia Hallisy obtained her BS in Biological Science from the University of San Francisco in 1984 and a second Bachelor's degree from the University of California in Dental Sciences. In 1988, Dr. Hallisy also received her Doctorate in Dental Surgery from the University of California at San Francisco School of Dentistry. Since then, she has been in continuous private practice in San Francisco, California.
Her second child, Katherine Eileen, was diagnosed at five months of age with bilateral retinoblastoma. Dealing with her daughter's life-threatening diagnosis, the many recurrences of cancer, and the subsequent treatments for the malignant and aggressive tumors marked the beginning an almost 20-year involvement in our healthcare system. The unique combination of her scientific training, her work as a healthcare provider, and guiding a child through a chronic illness has afforded her invaluable insight as an advocate for patients.
In 2008, Dr. Hallisy founded the non-profit organization The Empowered Patient Coalition and co- authored The Empowered Patient Guide to Hospital Care for Patients and Families. The organization provides an advocate directory, factsheets and checklists, SBAR communication tools for patients, pocket guides, a patient reporting survey and hospital and community training sessions on patient safety and advocacy issues.
During this session Dr. Hallisy describes her family's ten-year journey through childhood advocacy. She explains how a patient advocate would have helped them navigate a difficult path. Especially useful is an advocate's ability to help the family focus on their immediate goals as well as organizing and categorizing priorities.
Related resources from Julia:
The Empowered Patient Decision Support App:
Report an adverse medical event:
Canine Companions for Independence® provides highly-trained assistance dogs for children and adults with disabilities, free of charge. The most advanced technology capable of transforming the lives of people with disabilities has a cold nose and a warm heart!”
Becky Miller is an Instructor for Canine Companions for Independence. She has been training service dogs for people with disabilities with the organization for 6 1/2 years. She has always had a deep passion for working with animals and holds a Bachelor's of Science degree in psychology with an emphasis in animal behavior from St. Mary's College of California. She is currently enrolled in veterinary technician school and holds a position on the Board of Directors for Zoofari Inc, an animal conservation/education non-profit.
Points covered include:
Dave Eling is a Muskegon native; graduated Muskegon High School 1967; entered US Air Force January 1968 retired February 1988; Hired as Director West Michigan Veterans Service Center 1990; Instrumental in the formation of West Michigan Veterans, Inc. in 1992 and the Muskegon County Department of Veterans Affairs 1994; Dave has been the Director of all three entities since their inception.
Points covered include:
Cecelia Ramsey became a passionate advocate for person with developmental disabilities through the lifelong influence of her brother Patrick, a gentle soul who passed away in 2001. She began her career as a Psychiatric Technician, working in three California Developmental Centers over 10 years. She later moved into community based care, serving in steadily advancing positions at service provider organizations in San Diego County. Before her current position of Executive Director at DSC she served as Director of Consumer Affairs for the organization. She continues to serve as an Instructor in the Certified Direct Support Professional program through the San Diego County Office of Education.
During this teleconference session Cecilia covered:
Terry DeBell, a registered nurse for more than 40 years, currently serves on the boards of several organizations involved in services for people with developmental disabilities. She also serves on a Governor’s Advisory Board and frequently gives testimony to the California Legislature. Her primary focus is on those with a severe or profound disability who are presently served in two of California's Developmental Centers. She is closely involved with the closure of one other Developmental Center, working with other families, the Department of Developmental Services, and Regional Centers to ensure that the residents are able to transition to a non-DC community setting safely and successfully.
A component of NAHAC’s mission is to support public education and foster effective self-advocacy. During this teleconference session Terry will address the following topics:
Sima Kahn, a Certified Menopause Practitioner, has always been a passionate advocate for her patients and founded Healthcare Advocacy Partners in 2009 to fill a critical gap in the healthcare system. After almost 25 years of Obstetrics and Gynecology practice, Sima’s breadth of clinical experience has given her a deep understanding of the complexities of the medical system and the overwhelming confusion patients often feel when faced with significant health situations.
A component of NAHAC’s mission is to support public education and foster effective self-advocacy. During this teleconference session Terry will address the following topics:
Lois Steinberg is the president and co-founder of the Center for Aging in Place, an affiliate of the Village to Village network, which is expanding the "Village Movement" throughout Westchester County in New York. She is the founding director of the Medicare Rights Center's Westchester programs where she conducted the award-winning Seniors Out Speaking on Medicare (SOS Medicare) program. Her previous careers include policy and marketing research, public relations, and educational advocacy.
A component of NAHAC’s mission is to support public education and foster effective self-advocacy. During this teleconference session Lois addressed the following topics:
Melinda Hunsaker is a Managing Partner at McGonigle & Hunsaker, LLP. Her practice includes Medi-Cal Planning, Applications, and Appeals, Estate Planning and Trust Administration, including Special Needs Trusts, Probate, Conservatorships, Guardianships, and other Elder Law related matters. Ms. Hunsaker received her law degree from Western State University, College of Law, graduating cum laude in December of 2005, and was admitted to the California State Bar in May of 2006.
Ms. Hunsaker is a member of the Orange County Bar Association (OCBA) Trust & Estates section and the OCBA Elder Law section, as well as a member of the J. Reuben Clark Law Society. Ms. Hunsaker is a regular presenter at "Transition Night" for the North Orange County Community College District, School of Continuing Education, for the developmentally disabled and their families. Ms. Hunsaker is also a regular volunteer at the Orange County Probate Court's free Limited Conservatorship Clinic and has been published in the Orange County Lawyer. Ms. Hunsaker frequently gives presentations throughout Southern California to churches, schools and community organizations for seniors, people with special needs, and their families as well as provide training to attorneys and other professionals, hospitals, and skilled nursing facilities.
Ms. Hunsaker’s article that published in the Orange County Lawyer on this topic.
A component of NAHAC’s mission is to support public education and foster effective self-advocacy. During this teleconference session Ms. Hunsaker covered the following topics:
Since 2002, David C. Leven has been the executive director of Compassion & Choices of New York, an organization working to improve care and expand choices at end-of-life. He is a graduate of the University of Rochester and Syracuse University College of Law. An advocate for patients and an expert on advance care planning, patient rights, palliative care, and end-of-life issues, Mr. Leven plays a leadership role in having healthcare legislation introduced and enacted in New York. Improvements in pain management and palliative care options have resulted from Mr. Leven's legislative work, as well as an increase in the numbers of people with completed healthcare proxies.
Mr. Leven lectures frequently to diverse professional groups, students, and citizens of all ages. He is also a regular guest lecturer at College of New Rochelle School of Nursing and Fordham Graduate School of Social Service.
A component of NAHAC’s mission is to support public education and foster effective self-advocacy. During this teleconference Mr. Leven will covers the following topics:
Katy Butler's memoir, "Knocking on Heaven's Door", was named “One of the Ten Best Memoirs of 2013 “ by Publishers Weekly as well as one of the “100 Notable Books of 2013” by the New York Times. It most recently won the “Books for A Better Life Award”
Knocking on Heaven's DoorHer memoir chronicles the last 8 years of her parents' lives, as Katy was her parents' part-time caregiver and full-time medical advocate. Her ground breaking book explores her struggle to allow her parents the "Good Deaths" they wanted, and the forces within medicine that stood in the way. Its provocative thesis is that modern medicine, in its quest for maximum longevity, often creates more suffering than it prevents.
Her many essays and articles, often blending memoir and investigative reporting, have appeared in The Wall Street Journal, The New Yorker, The New York Times Magazine, Best American Essays, Best American Science Writing, and Best Buddhist Writing.
Accompanying presentation slides
Nora Jean Levin has been Executive Director of Caring from a Distance since 2004, when the position was created. She is responsible for the organization's website, designed with assistance from a team of long distance caregiver advisors, and powered by CFAD's award-winning technology partner, Trilogy Integrated Resources. With strategic community partners, she created the pilot on-line Metro D.C service directory, forging agreement between CFAD, the Guide to the Retirement Living and the Jewish Council for the Aging Senior Helpline. In 2009, responding to a initiative suggested by two families, Levin spear-headed CFAD's Caregiver Award Program using YouTube and a Caring from a Distance Channel as a unique platform to increase public awareness of the important role of caregiving.
The author of "How to Care for Your Parents: A Practical Guide to Eldercare" (4th edition), WW Norton (1997), Levin has written, spoken and consulted on eldercare issues for almost 25 years. In 2001, she was nominated for the Rosalynn Carter Caregiving Award as an "exceptional eldercare pioneer and consumer advocate for contributions focusing on family needs for better access to eldercare information and services."
Ms. Levin describes the tools available through “Caring from a Distance” to help families organize care for their loved one, including checklists, a library, and new technology tools that make information available to caregivers, medical staff and family members. In this session, we explored various scenarios that families frequently confront and solutions to manage the challenges.
Casey Quinlan gave herself the title “Mighty Mouth” on the theory that if you can’t hide it, hang a flag on it.
After getting a breast cancer diagnosis just days before Christmas in 2007, she wrote the Amazon best seller Cancer for Christmas: Making the Most of a Daunting Gift, which tells her story of managing medical care and exhorts everyone to become their own patient advocate.
She’s a member of the Society for Participatory Medicine, produces audio and video content for the Society of Hospital Medicine’s The Hospitalist Magazine, and is one of the Disruptive Women in Health Care, an online community of women dedicated to serving as a platform for provocative ideas, thoughts, and solutions in health and medicine. She has also been named an ePatient Scholar to MedicineX 2013 at Stanford University, and is a member of a federal workgroup on consumer engagement and health IT.
Casey is a former network news field producer who helped cover breaking news across the globe for over two decades, learning all about what makes a great story. She talked her way out of police custody in Saudi Arabia, and did standup comedy in New York for several years – “fear” is not a word in her dictionary.
Handouts and Worksheets
Lisa Berry Blackstock is the Founder and Owner of Soul Sherpa, a company devoted to comprehensive patient advocacy and personal life care protection.
Lisa Berry Blackstock has worked in the field of patient advocacy as an adjunct to estate and life care planning since 1990. A survivor of an originally misdiagnosed nerve disorder, trigeminal neuralgia, which required major brain surgery in 2007 to restore her to health, Lisa believes in the power of patient advocacy not only for herself, but for every person. After recovering from her health crisis, Lisa became more focused to advocate and educate, believing the movement of patient advocacy has just begun and has a bright, strong future.
During this session Lisa Berry Blackstock addressed the prevalence of ‘hospital drift” within the hospital setting where fragmented care and miscommunications are serious hazards for all patients’ safety.
Tips for advocates on how best to provide hospital bedside and discharge services to improve care and eliminate errors.