2011 Best Of Awards in Family Caregiving

For the second year in a row, Family Caregiver Alliance announces our “Best of” awards focused on research, personal accounts, and media coverage of family caregivers during the past year.  The “Best of” awards are drawn from our “Family Caregiving 2011: Year in Review” report that is a compilation of the key developments during the past year that affect family caregivers.  For our awardees, your official certificates are in the mail.

The “Doctor Knows Best” award goes to Dr. Ken Murray, a Clinical Assistant Professor of Family Medicine at the University of Southern California. Dr. Murray’s article, “How Doctors Die- It’s Not Like the Rest of Us, But It Should Be” addressed the differences in how doctors treat end-of-life decision making when they are diagnosed with chronic illnesses. His article is a thoughtful critique of how our current healthcare system, families, and doctors approach end-of-life care.

The best “Personal Account: Hospice Care for a Loved One” goes to Eleanor Clift, for her article, “Hospice And The ‘End Game,’” in which Clift shares the experience she and her late husband, Tom Brazaitis, had with his hospice care. Brazaitis, also a veteran political reporter, was diagnosed with stage 4 cancer, and Clift explains, “He drew on an inner strength that I think surprised him as much as it did me.” Her poignant account weaves together their story with an analysis about the politics involved in end-of-life decision making.

The best “Actually, the Sky is Falling” award goes to Michael Ogg, for his article, “Running Out Of Time, Money, And Independence?” Ogg, is 56 years old, and was diagnosed with primary progressive multiple sclerosis when he was 42. In his account, Ogg describes the instrumental role that his Personal Care Assistants play in his ability to remain in his home.

His account was published prior to the “pausing” of the Community Living Assistance and Services and Supports, (CLASS) program in October 2011, and Ogg suggests that CLASS would be helpful in situations like his for planning and paying for services that enable receiving long-term services in the community instead of a nursing home.

The best “Reality Check” award is shared:

Deb Holtz, the Long-Term Care Ombudsman for the state of Minnesota, stayed at a nursing home in Roseville after complications from a shoulder replacement surgery. While she was scheduled to stay for a week, she left after 25 hours, and an article about her experience in the Star Tribune touches on the many issues faced by nursing home residents and their loved ones.

Kara Janes, a graduate social work student from Maine, also receives the award for participating in the “Learning by Living” program in which she spent ten days living in a nursing home without visitors. Janes had a “diagnosis” of stroke, and fully embraced her diagnosis, ate a pureed diet, and was assisted with her activities of daily living. Janes is the first non-doctor to participate in the program, and her experience was covered in the Bangor Daily News.  You can read her perspective on the experience in this issue (starts on page 12) of Silverwire, the newsletter of the University of Maine’s Center on Aging.

The best “Personal Account: Care Transitions” goes to Sarah Stephens, who courageously shared the story of her father’s end-of-life care “My Father’s End-Of-Life Treatment: Not What He Had In Mind” on the  CommonHealth blog. Her account is a strong reminder of why this country needs to focus on improving end-of-life care and care transitions.  She explains,

“In the four weeks prior to his death, my father lived under the care of five different institutions in two states. Only the last place, the hospice, appeared willing or able to provide care and comfort to a man who was obviously at the end of his life. Each facility admitted its failure to address my father’s needs by moving him on; each transition increased his stress and suffering. It was torture for me and my sister to watch.”

The best “Middle-Class Family Caregiver Squeeze” award goes to Peter Bella, for his article, “The elderly dilemma: Medicare-Medicaid fail middle class families.” Bella, a retired Chicago Police Officer, cared for his 96-year old mother with the assistance of direct care workers, who he explains “were wonderful women…They took care of her as if she was their own mother…It was expensive as sin….Over the past two years it has cost me over $170,000 to care for her at home.” He continues:

“If something is not changed, large numbers of us, or our children, will be faced with severe financial burdens or the dilemma of making quality of life choices that satisfy no one.”

The best “Wisdom” award goes to Lilian Rubin, an 87-year mom whose article, “The Dilemma of taking care of elderly parents” is told from the perspective of a parent whose adult daughter (aged 63) worries about her. While acknowledging that this is not a new issue, Rubin suggest that longer lifespans and more women in the workplace bring new challenges to the issue of eldercare. She concludes:

“What to do? I have no easy answers. What I do know is that one of the great challenges facing both the nation and its families is how to take care of our parents and grandparents — a problem that is increasing exponentially as 78 million baby boomers have begun to move into the ranks of the elderly.”

The best “Roadmap to a Better Future” award goes to the AARP Public Policy Institute, The Commonwealth Fund, and The Scan Foundation, for their ground-breaking report: “Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers.” The report uses 25 measures to assess each state’s system of long-term services and supports, and provides clear avenues for policymakers who want to make improvements to their state system. One of the most shocking statistics was the average price of nursing home care in the U.S.: 241% of older people’s average annual household income.

The “Most Interesting HCBS Research” award goes to the five authors of “Medicaid Savings Resulted When Community Health Workers Matched Those With Needs To Home And Community Care.” The study focused on the Arkansas Community Connector program that used six full-time,community health workers to connect people with potential unmet long-term care needs with Medicaid HCBS. The authors found that, contrary to the “woodwork effect” theory that is sometimes cited as a reason to not provide HCBS, this program actually lowered costs.

The program led to a total estimated savings of $3.515 million in Medicaid expenditures for the 919 participants during the three-year period.  After subtracting $896,000 in operational expenses, the program resulted in a net savings of $2.619 million, “or a return on investment of $2.92 per dollar invested in the program.”

This is our second annual “Best of” awards, if you would like to see the winners for 2010, click here.

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