Caring From a Distance – Tools to Help Long-Distance Caregivers

Speaker: Nora Jean Levin - 

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.

Presentation Links (*some links no longer available)

• Howard Gleckman blog
• Caring From A Distance “What To Do Checklist”*
• Action items to help distance caregivers get organized*
• United Hospital Fund Next Step in Care site with checklists and guides from everything from transition of care to best way to help at doctor visits.
• To order bulk orders of the free pamphlet, Frankly Speaking about Cancer; Support from a Distance, click the link and go to Caregiver section
• Gaining access to Medicare/ VA health records via Blue Button. Access, add personal information and share vital information.
• IBlueButton apps* - to get and share records from multiple sources using scan codes
• ICEBlueButton - In Case of Emergency view a record with important health information

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Knocking on Heaven’s Door: the Path to a Better Way of Death

Speaker: Katy Butler - 

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”

Her 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 (10 MB PDF)

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What Health Advocates Need to Know about Improving Care and Expanding Choices at End of Life

Speaker: David C. Leven - 

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:

• The fundamentals of advance care planning
• Protecting patient autonomy at end of life
• Palliative care and end-of-life issues

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What Health Advocates Need to Know About Conservatorships

Speaker: Melinda Hunsaker -

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:

• The fundamentals about how conservators work
• How to recognize when conservatorship may be needed
• Communication tips for addressing this topic with clients

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Aging in Place and the Village Movement

Speaker: Lois Steinberg - 

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:

• The Aging in Place, Village to Village movement is an emerging and popular grassroots development to help those who wish to remain in their homes as they age.
• Each "village" determines the services to be offered, structuring membership dues accordingly.
• Active, committed volunteers are key to the success of aging-in-place. Transportation service is nearly always a priority, and one with which volunteers can provide much support.
• Established villages have learned that they need an administrative director, at least on a part-time basis.
• The aging-in-place movement represents significant growth potential for healthcare advocates.

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Women's Health Series Part 2: Menopause

Speaker: Sima Kahn, MD -

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:

• Dr. Kahn explains the biology of menopause, discuss symptoms, review the latest findings on the use of hormone therapy and offer suggestions to manage this stage of life.
• This session will educate you more fully on this important women’s health issue and help you to communicate better with doctors about symptoms and treatment options.

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Help is a Four-Legged Word™

Speaker: Becky Miller -

Canine Companions for Independence® (CCI) 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:

• The breeding, puppy raising, and final training of the dogs
• The application process for those seeking a canine companion.
• The types of assistance the dogs provide
• Outreach to Veterans
• Prison puppy raising programs

Additional Resources

• Canine Companions Wounded Veterans Initiative: Calvin and Service Dog Chesney
  Watch Video »
• Air Force Veteran Jason and Canine Companions Service Dog Napal
  Watch Video »
• Wounded Veterans Initiative
  Watch Video »
• One Team, Two Heroes
  Watch Video »
• Comfort Dogs on the Diane Rehm Show
  Read Blog Entry »

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