August Hospice Advocate Spotlight
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Mary PintoHospice of Southern Maine’s (HSM) Director of Finance and Information Systems
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This month almost always marks a critical time for Hospice Advocacy on the home front as Members of Congress journey back to their home districts for Congressional recess, but this year is especially important as we enter the Congressional election cycle of 2010. From their track record of facilitating successful in-district meetings and site visits with their hospice’s federal representatives when it counts most, it is clear that few organizations understand this as well as Hospice of Southern Maine (HSM). Mary Pinto, Finance and Information Systems Director works behind the scenes to help pull these meetings together.
Just two years ago, the staff and leadership at HSM hosted Senator Susan Collins for a site tour of HSM’s 18-bed hospice facility, the Gosnell Memorial Hospice House. At the time, the hospice community was in the midst of a heated battle on Capitol Hill fighting against rate cuts associated with the Bush Administration’s elimination of the budget neutrality adjustment factor (BNAF).
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Additionally, the hospice community desperately needed Republican support to sway Congressional leadership to support the Medicare Hospice Protection Act (MHPA) of 2008 – an act that would grant hospices relief from the rate cuts. During the visit and tour, Mary and her colleagues spoke frankly with Senator Collins about what the looming cuts would mean to their program and the hospice community as a whole and presented her with a letter requesting her support of the MHPA. The Senator was so moved that she not only lent her support to the act, but took the hospice community’s concerns up with her fellow Members of Congress in a committee meeting that week. Her plea to the committee members garnered more Republican support and much needed media coverage in the form of a HealthBeat article in Congressional Quarterly, a widely-read D.C. political newspaper. The article further spread the word on the Hill of the hospice community’s plight and ultimately helped advance the MHPA. In that instance, HSM set the standard for effective in-district advocacy. And they’ve never looked back. This year, whilst Members of Congress awaited the vote on the long-anticipated health care reform legislation in early February -- at a time when their interest in health care was at its highest peak -- Mary and her colleagues at HSM sprung into action again. They seized the advocacy opportunity to host a site visit at HSM’s Gosnell Memorial Hospice House in order to educate Rep. Chellie Pingree (ME-1st) about the value of HSM’s home based and inpatient services to her constituents. Led, carefully constructed and facilitated by Mary and her colleagues, that site tour with Rep. Pingree was an abounding success. The follow-up notes from the meeting read like a play by play of how to maximize the impact of a Congressional site tour of your hospice program or facility. So much so, that NHPCO Public Policy Department highlighted Rep. Pingree's visit to HSM as its requisite case study for the NHPCO Spring 2010 In-District Action Kit. Here’s a brief excerpt from that case study:
“Recently, Congresswoman Chellie Pingree (ME-1) and a local aide visited an inpatient unit at the Hospice of Southern Maine (HSM). She was greeted by members of HSM’s leadership including Mary Pinto, the program’s Finance Director. Ms. Pinto and the team at HSM had prepared a comprehensive site visit, one that seemed to leave a lasting impression on Rep. Pingree… After touring the facility, Rep. Pingree sat with several local end- of- life care community professionals and discussed the challenges faced by hospice. During these discussions, Congresswoman Pingree expressed surprise at the extent to which HSM depended on the Medicare Hospice Benefit for revenue.”
With Mary and her colleagues speaking candidly about the issues, HSM was able to touch one Member of Congress in Rep. Pingree that day. For some, those instances of great advocacy work would have been testament enough to HSM’s commitment to ensuring continued access to quality care for the communities they serve. However, those seemingly perfect site tours with Congresswomen Collins and Pingree were not enough to satisfy Mary and HSM staff’s desire to advocate often and loudly on behalf of their hospice, patients, families and the larger hospice community. As looming rate cuts threaten to jeopardize HSM's ability to continue to offer quality, compassionate care to our dying, Mary is continuously stepping up to arrange forums to help tell Congress why hospice is a value to their constituent communities. That was certainly the case this May when Mary called on NHPCO to aid her in preparing HSM CEO Arlene Wing for a meeting with aides to Senators Olympia J. Snowe (R-ME) and Susan Collins (R-ME) to discuss policy issues impacting hospice. That meeting also proved successful, with Arlene sharing very relevant data with the Senator’s staffs about the impact the rate cuts included in the Patient Protection and Affordable Care Act will have on HSM if enacted as scheduled in October 2012.
Her track record would suggest that Mary has adapted the philosophy that her advocacy efforts are only as successful as the next step she takes to educate Congress. Hence, as busy and hectic as their work schedules get, Mary Pinto, Arlene Wing and their team at HSM vow to continue to reach out to Maine’s federal representatives in the name of Hospice Advocacy.
July Hospice Advocate Spotlight
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David Stone, Director for the
Centers for Access and Excellence
at Florida Hospices and
Palliative Care
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His Twitter bio describes him as a “hospice guru, big idea thinker, meeting planner extraordinaire, certified association executive and Disney fan,” but for his 130 plus followers on the social media website the tweeter known as @HospiceDave is also a pioneer of Hospice Advocacy.
As social media tools like Twitter become a more comfortable and convenient way to engage with communities and expand professional and personal networks, everyone from Members of Congress to reporters for major news outlets to advocacy organizations across the nation are gaining a presence in that sphere. And, apparently so are dedicated Hospice Advocates like @HospiceDave also known as Director for the Centers for Access and Excellence at Florida Hospices and Palliative Care David Stone. He has made it his mission to spread the word about policy and legislation impacting the hospice community and to urge those he is connected with to do the same.
Boasting 741 hospice and Hospice Advocacy-related tweets to date, he is leading the charge for online engagement on issues impacting the hospice community. And it is clear that his commitment extends far beyond that demanded by his job. For David, Hospice Advocacy is personal –while going about his normal day at home, at work and during relevant conferences nationwide, he is fighting for the care in healthcare by spreading the word on Twitter.
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During NHPCO ‘s Capitol Hill Day 2010 and Management and Leadership Conference, David did not just tweet about the information that was being shared with him, he journaled the entire experience — from the moment he stepped foot on Capitol Hill to the moment he got on the plane back to Florida. In between meetings on the Hill, the zealous online advocate’s tweets ran the gamut from status updates to pictures of him with his delegation and Members of Congress. Here are a few things @HospiceDave shared with his followers during Hill Day:
Meeting in Rep. Ros-Lehtinen's Office. FL Hospice Advocacy Day @HospiceAction http://tweetphoto.com/19358440 Wednesday, April 21, 2010 3:34:40 PM via UberTwitter from Washington Mall, Washington
Hey look it's my Rep! FL Hospice Advocates @HospiceAction http://tweetphoto.com/19354321 Wednesday, April 21, 2010 2:53:09 PM via UberTwitter from Washington Mall, Washington
Meeting with Sen. LeMieux's healthcare LA. http://myloc.me/6fSXx Wednesday, April 21, 2010 10:38:40 AM via UberTwitter from Washington Mall, Washington
Hospice and end-of-life care is not about politics. It's about compassionate care for those most vulnerable. 2:06 PM Apr 20th via UberTwitter
His excitement , enthusiasm and passion about Hospice Advocacy is infectious on Twitter and helps open up the lines of communication with a broader audience who want to learn. When he tweets about the latest happenings for the hospice community on the Hill and in their local communities, he is able to lead a discourse that sparks ideas on grassroots engagement for other Advocates. It is a model of discourse that works in tandem with, and often compliments, the Hospice Action Network’s efforts to grow the movement to preserve quality, compassionate end-of-life care nationwide. And as long as the hospice community continues to face challenges that demand the continual education of policymakers on the value the benefit, David Stone vows to continue to educate the masses and raise the profile of hospice issues, using Twitter as his platform.
June Hospice Advocate Spotlight
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Rick Kasper Joliet Area Community
Hospice’s CEO
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Joliet Area Community Hospice (JACH) is a non-profit hospice provider, serving hundreds of patients who live in the five counties in and surrounding Joliet, Ill. With all of the daily oversight, fundraising and coordination required to run such an organization, taking the time out to advocate for hospice on a regular basis may seem impossible for some. However, as a 22-year veteran in the healthcare industry who has spent nearly a decade working for hospice, JACH’s CEO Rick Kasper is a force to be reckoned with in the fight to protect and preserve access to the Medicare hospice benefit in his community.
Since he began as JACH’s CEO in 2009, Rick has become the most active Hospice Advocate through NHPCO’s Legislative Action Center (LAC). From fall 2009 to now, he has written over 150 letters to Congress and the President about the impact of Medicare reimbursement rate cuts to his hospice and community. Though constant and consistent outreach through the LAC is commendable in its own right, Rick’s efforts haven’t stopped there. He has made a concentrated effort to integrate Hospice Advocacy and advocacy education into various facets of JACH’s program, both internally and externally.
Rick takes time out during every staff and board meeting to educate his team and board of directors on the importance of hospice advocacy to their organization. He sets the stage by informing everyone – from CNAs and RNs to the executive leadership team – about the local and national legislative landscape and how it is specifically affecting JACH.
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After explaining the climate of the hospice community, he encourages them to join him in writing letters to the editor for the Joliet Herald and other local papers. Extending this effort outside of JACH’s immediate staff and board, Rick and his team have dedicated a significant portion of the organization’s quarterly newsletter to empower more than 13,00 donors, patients and families to take action by educating them on the policy issues impacting their hospice. He has even stepped up his own level of advocacy engagement this year by participating in local radio stations to discuss the impact of rate cuts on area hospices. And, in April, the zealous Hospice Advocate met with Illinois legislators to educate them about reimbursement issues JACH has been facing on the state level.
Rick is also an active member of the Illinois Hospice and Palliative Care Organization serving on the Legislative and Veterans Committee, as well as a member of the Will County Center for Economic Development serving on their Government Affairs committee. As the larger hospice community works with NHPCO Hospice Action Network to enlighten Members of Congress about the value of hospice in communities nationwide, Rick vows to not only continue, but strengthen his Hospice Advocacy efforts and that of his team. He is creating new and seizing every opportunity to educate state and federal legislators about the impact of slow reimbursement and Medicare reimbursement rate cuts on JACH and its many patients.
May Hospice Advocate Spotlight
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Tricia Harney, Hospice
of Michigan’s Marketing Project Manager
of Business Development
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What comes to mind when you ponder the duties of your hospice’s resident marketing and business development team? Surely, it’s not organizing, prepping and teaching team members and executive team to effectively and efficiently educate legislators about the value of hospice in their local area communities. These are tasks that wouldn’t ordinarily fall under the duties of marketing staff for a hospice. But, like the resourceful Hospice Advocate she is, Hospice of Michigan’s (HOM) Marketing Project Manager of Business Development Tricia Harney saw a need and found a way to fill it; she carved her own niche as the “the planner, strategist, and logistician” of HOM’s Hospice Advocacy endeavors and hasn’t looked back since.
Since starting at HOM in 2006, Tricia has seamlessly incorporated these key functions into her daily duties and along with members of HOM's executive team, made local advocacy a standing priority for HOM employees. She forged and works to nurture and maintain countless working relationships with state legislators in Michigan. Understanding that these individuals all come from very diverse backgrounds, she has fine-tuned her ability to speak their language by demystifying hospice – breaking this unique and complex medical model down in terms that are personal and relatable to people outside of the hospice community.
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Tricia capitalizes on that particular skill by teaching and empowering other people within her organization to do the same. This year alone, she spearheaded three initiatives to help Michigan’s state and federal legislature better aid and understand hospice in the context of the state’s larger community. Tricia developed HOM’s Medicaid Hospice 2010 strategy, including a grid that showed the HOM executive team how the organization would work with the state legislature to preserve Medicaid hospice funding. Additionally, she coordinated the hospice’s year-round advocacy efforts and is devloping a new effort encouraging and facilitating a venue for HOM board members to interact with legislators. This new initiative will serve to position board members as the next generation of in-district “legislative advocates” within HOM.
Tricia also hones NHPCO’s national advocacy messaging on federal issues before it is sent out for HOM’s Hospice Advocate base to understand and apply in their outreach to federal and state lawmakers. During NHPCO Hill Day 2010, Tricia and the rest of the Michigan delegation met with Senator Carl Levin (D-Mich.) and Congressman David Camp (R-Mich.-4th) to shed some light on Michigan’s hospice community. That exchange between the Michigan delegation and their federal representatives helped shape HOM’s advocacy agenda for the remainder of the 2010. In fact, the HOM advocacy team’s efforts promise to continue to grow by leaps and bounds throughout the year. In the coming month, they will re-examine the Michigan Dignified Death Act by exploring the intent of each law (from pain to consumer empowerment to physician education) and how the law helps or hinders end of life care delivery today. In response to the “death panel discussion’ from last summer’s health care reform debate and as a result of their visits on the hill, they will work with their federal representatives as well as state-wide Michigan legislative members to advocate planned end-of-life care and the importance of open discussion by using their end-of-life care discussion toolkit, titled “Have You had the Talk” as well as “Except for Six” documentary throughout the state. Tricia and the HOM leadership are also working with NHPCO Hospice Action Network to craft a strategy for in-district meetings and activity to take advantage of the upcoming federal election cycle. As the legislative climate changes in Michigan and the local hospice community’s advocacy needs shift, Tricia and her colleagues will continue to be resourceful and come up with advocacy initiatives to help HOM and the larger local hospice community meet those needs.
April Hospice Advocate Spotlight
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From left: Amber Shine, a Young Adult Hospice Advocate with Renée Berry
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Two years after her college graduation, Renée Berry found herself drawn to the hospice community and its efforts to educate Congress about compassionate end-of-life care. She registered for and attended Capitol Hill Day 2009. One of the most enthusiastic attendees, Renée made the most of her Hill Day experience last year and left fired up to make change for hospice in her local community and promptly landed a job as Volunteer Services Manager with VITAS Innovative Hospice Care of San Francisco Bay.
In her role with VITAS, Renée uses her enthusiasm to rally local hospice volunteers of all ages. She even coaches local high school students by planning Hospice Advocacy clubs at their schools. In tandem with the youth-focused hospice volunteer work that she does for VITAS, Renée recently created Young Adult Hospice Advocates, a network focused on providing resources and connecting people interested in end-of-life care. She believes that engaging teens and students in the conversation about high quality end-of-life care is a great opportunity to educate the larger community about advance care planning and patient-centered care.
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Even though these endeavors keep her very busy, Renée is all geared up for her trip to NHPCO’s Capitol Hill Day 2010 in Washington, D.C. She is thrilled to go back to the Hill later this month and continue voicing the immeasurable impact hospice has on patients at the end of their lives. Renée is so committed to getting the hospice message out that she will also be tweeting about her Hill Day experience (@Renee_Berry) alongside with @HospiceAction and the Hospice Action Network Facebook Fan Page to keep Hospice Advocates at home informed of the Hill Day happenings.
One might be surprised, however, to learn that Renée’s fervor and passion for Hospice Advocacy was sparked long before she arrived at NHPCO’s Capitol Hill Day 2009. Renée’s zeal for Hospice Advocacy started with a volunteer trip through her high school where she was assigned to re-paint a bathroom for the Lazarus House, a home serving HIV patients in New Orleans. The teens came together with residents for barbecues, bingo and sharing stories. Renée describes the experience as a crucial learning experience for her — she recognized that people with terminal illnesses were people just like her. That experience colored Renée’s view of end-of life care and led her to become a volunteer for Hospice Partners of the Central Coast in San Luis Obispo during her undergraduate years.
Renée Berry’s youth outreach proves that every voice counts in our fight to preserve and protect access to compassionate, quality end-of-life care for all Americans.
March Hospice Advocate Spotlight
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From left to right: Eileen Emery, Director of Volunteer Services; Cathi Skelly, Volunteer Coordinator; Pat Andrini, Volunteer; Christie Wilson, Volunteer; Sally Brouilette, Volunteer; Jackie McDevitt, Volunteer; Dr. Lou Benson, CEO; Debbie Young, Volunteer; Janine Cacciatore, COO.
Recognizing that this year will be pivotal for health care and the hospice community on a state and federal level, Vice President and Chief Operating Officer of Treasure Coast Hospice (TCH) Janine Cacciatore is stepping up to make Hospice Advocacy a top priority in her Florida community.
A 30-year veteran in the health care industry and a member of the NHPCO Regulatory Committee, Janine is leading her team in an effort to create an “advocacy task force” by tapping into TCH’s extensive volunteer network. Janine and her team’s vision for the “Volunteers have Voices” effort is to empower a large group of educated and motivated hospice supporters who have the tools to quickly and effectively engage in impactful communication with key legislative decision makers.
And, the wheels are in motion for them to do just that! From their pool of over 1,000 advocates, TCH staff has selected volunteers with an interest in public policy to serve as a nucleus championing this idea further in the community as they lead this task force.
These six volunteers and two board members are laying the foundation for this area-wide advocacy movement by executing a careful planning and surveying process. So far they have come up with a plan of action to tackle everything from real time response and the creation of a letter to the editor group to drafting separate timelines for the state and federal issues and creating resources for volunteers, including a website call button; volunteer access to the federal and state hospice websites; and scripts, talking points and leave-behinds. The group has even sent a short survey to approximately 400 TCH volunteers to inquire about their experience with legislators and their interest in participating in the Volunteer Advocacy Program.
TCH is at the beginning stages of their advocacy plan and waiting for the volunteer responses from the survey. They are encouraged by the preliminary responses and will continue with the regular task force meetings to work through many of the tactics as well as schedule further “Meet your Legislator” meetings at TCH. Janine and the TCH staff know the impact and power that a plan of action to engage their committed volunteers will have and make a difference in the future of hospice care. Their commitment to the Hospice Advocacy movement is one worthy of praise, but more importantly it is an example worth following to grow the base of Hospice Advocates in your area and by extension, nationwide.
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February Hospice Advocate Spotlight
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Hospice Advocates from Minnesota enjoy “Morning Minnesota," a breakfast gathering hosted by Senator Amy Klobuchar on the Hill. (From left to right: Margaret Wolters, St. Mary's Hospice & Palliative Care, Duluth; Paula Pennington, St. Mary's Hospice & Palliative Care, Virginia; Kate Cummings, Fairview HomeCare & Hospice, Minneapolis; Senator Klobuchar, Lisa Abicht-Swensen, Hospice of the Twin Cities, Plymouth; and Michele Fedderly, Executive Director, Hospice Minnesota.)
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Minnesota has a reputation as one of the nation's highest election voter turnout states and enjoys an impressive level of civic engagement amongst its citizens. With Executive Director Michele Fedderly at the helm, Hospice Minnesota, its board of directors and members mirror this commitment in their efforts to advocate for hospice.
Recently elected chair of NHPCO’s Council of States for the 2010-2013 term and entering her sixth consecutive year as executive director of Hospice Minnesota, Michele is dedicated to preserving quality end-of-life care in Minnesota and throughout the nation. And, it shows. She has remained a consistent participant in NHPCO’s annual Capitol Hill Day events. Michele not only attends herself, but rallies members of her organization to join in meeting with their Members of Congress on behalf of hospice.
Throughout the year, Michele, her staff and Hospice Minnesota members work to increase public awareness about hospice care and the need for advocacy. Michele has also worked with Hospice Minnesota members to invite state legislators and congressional leaders to their programs to share stories of patients and families they serve.
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Hospice Minnesota and its members have testified before the state legislature. Through an active public policy committee, they track upcoming legislation and respond with comment letters to proposed regulations. With their clear dedication to the hospice community guiding them, Hospice Minnesota and its members are committed to continuing and growing their advocacy efforts this year.
January Hospice Advocate Spotlight
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Kathy McMahon President and
CEO of the Hospice and Palliative Care Association of New York State
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With over 25 years experience in the healthcare industry, and a decade working on behalf of hospice in New York state, President and CEO of the Hospice and Palliative Care Association of New York State (HPCANYS), Kathy McMahon is a hospice advocate through and through. She adamantly and tirelessly speaks out about health policy affecting the hospice community both on a state and national level.
Whilst the Patient Protection and Affordable Care Act, was being hotly debated on the Senate floor, Kathy was at home organizing HPCANYS members for action to ensure that New York State Members of Congress were reminded of the health care reform-related needs and concerns of the hospice community. At just the right time, she rallied six hospice providers from all over New York State and worked with NHPCO to orchestrate a much needed and ultimately, very successful mini Hill Day last month. This year, Kathy will use a wide range of techniques to ramp up HPCANYS’ advocacy efforts across the board. She plans to tackle issues that run the gamut from hospice and health care reform nationally to state budgeting and licensure issues through facilitating more mini Hill Days, and a Legislative Day for members if need be and all while, keeping her membership well informed about policy concerns throughout the year via legislative action alerts.
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Kathy’s passion and love for the hospice community keep her poised to take action at home and on the Hill when the need arises.
December Hospice Advocate Spotlight
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Brandy Cantor, Executive Director Kentucky Association of
Hospice and Palliative Care (second from the left above),
is shown with the Kentucky delegation on Capitol Hill
during NHPCO’s 2009 Hill Day.
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Carrying a heavy workload as the executive director of the Kentucky Association of Hospice and Palliative Care (KAHPC) and client relations manager for a busy lobbying firm, one would imagine that she has little time to devote to grassroots advocacy. However, Brandy Cantor makes the time.
Brandy knows the power and utter importance of persistence in Hospice Advocacy, especially on the Hill, and she has rallied members of her organization to become the “squeaky wheel” that Kentucky’s Members of Congress simply can’t ignore. Her advocacy efforts run the gamut—from writing letters and sending emails to working with NHPCO to orchestrate fly-ins for Kentucky Hospice Advocates to meet with their Congressmen to discuss issues affecting their local hospices. This year alone, Brandy accompanied one of the largest delegations at NHPCO’s annual Hill Day, raised awareness for hospice during a critical phase of the health care reform debate, and brought the president of KAHPC’s Board of Directors to Capitol Hill.
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In her most recent contact with Members of Congress, Brandy has been very vocal about the impact of additional proposed cuts included in health care reform legislation on hospice. Following her most recent fly-in on Oct. 21, Senator Mitch McConnell (R-KY) cited a letter that Brandy wrote to him. In the remarks he made on Oct. 22, McConnell said “Last month, I received a letter from Brandy Cantor with the Kentucky Association of Hospice and Palliative Care. She told me about the tremendous emotional and spiritual support that hospice care workers provide each year to thousands of Kentuckians at the end of their lives. And she also told me that the cuts to these programs would have a devastating effect on the good work these facilities do.”
It is clear that Brandy’s persistence is paying off and she is grabbing the attention of policymakers. Brandy will accompany yet another large delegation to Capitol Hill to discuss hospice and health care reform in the coming days.
November Hospice Advocate Spotlight
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Katie Smith McIntyre, Community Relations Coordinator, Hospice of Central Iowa
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In her role as community relations coordinator for Hospice of Central Iowa—Iowa’s oldest non-profit, community-based provider serving 35 counties — Katie facilitates the organization’s legislative outreach efforts, which has been a great fit with her background in law and public relations. Most recently, Katie was quick to respond to NHPCO’s call to “Share Your Story: Two Cuts are Too Much” video testimonial campaign. She videotaped surviving family members with various perspectives and captured some rural footage of her family’s farm to hit home the impact of the cuts to rural communities. Because of her work, she was asked to submit a blog entry, The Price of Hospice Rate Cuts, to GeriPal.org as part of The Alliance for Care at the End of Life’s social media extension of its “Two Cuts are Too Much” grassroots campaign.
At various events, Katie has personally met with Senator Grassley, most recently explaining the video testimonials and the proposed rate cuts. When the original cuts were announced last year, she worked closely with Senator Harkin’s local and national offices, which led to a local television news station’s coverage featuring phone interviews with both Iowa Senators.
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Keeping her colleagues informed on hospice advocacy has been a top priority for Katie, who also attended a local town hall meeting to lead by example. On the state level, she is a member of the Hospice & Palliative Care Association of Iowa’s Advocacy Committee. Last winter, she accompanied Hospice of Central Iowa’s vice president of patient and family care to meet with Iowa legislators about hospice care as part of the organization’s Legislative Day.
Katie has used her position as her organization’s primary media representative to further advance hospice awareness. She directs publicity for National Healthcare Decisions Day, for which she is a state liaison. She has also integrated advocacy in Hospice of Central Iowa’s Speakers Bureau presentations, which she oversees. Katie demonstrates why raising funds for hospice is so important in news releases featuring Hospice of Central Iowa’s first group of Run to Remember (NHF’s training and fundraising program) participants. Katie led the group—the program’s most successful first-year effort, according to founder and race director Stuart Lazarus—with plans to build on its success throughout the year.
As written in her blog post, Katie became aware of hospice care when her organization served her great-grandmother, leading to a passion for its work and mission.
October Hospice Advocate Spotlight
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Margaret Cogswell, Executive Director, Hospice of the Panhandle
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Like many Hospice Advocates, Margaret Cogswell takes very seriously the charge to educate the public, the media and policymakers of the challenges facing the hospice community. Drawing on this strength, the executive director of Hospice of the Panhandle in Martinsburg, WV has really been flexing her congressional outreach muscle in the midst of the heated health care reform debate taking place on Capitol Hill. Armed with the facts about how the Senate Finance Committee proposed health care reform bill would adversely impact hospice, Margaret and her team had an audience with Senator Jay Rockefeller (D-WV and Member, Senate Finance Committee) at the hospice program on Friday, September 18— just days before the Senate Finance Committee mark-up of the bill was set to begin.
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With Hospice of the Panhandle staff, patient families and local media by her side, Margaret spoke candidly with the Senator about the proposed rate cuts to Hospice, providing him with the facts and figures of how her hospice would be particularly hurt by the cuts. She also spoke of the state-specific issues facing Hospice of the Panhandle and other West Virginia-based hospices. Margaret also allowed patients and families to tell the Senator about their experiences with hospice. In news articles chronicling the Senator’s visit, he was said to have made the connection between his personal experience with hospice and that of the families present, as well as expressed some awareness of the legislative issues affecting hospice. The more than two-hour visit even ended with “hospice hugs” for the Senator. Senator Rockefeller’s visit to Hospice of the Panhandle was covered by local media, here are links to the articles that were written about it:
Sept. 18 The Herald-Mail West Virginia: Rockefeller: End-of-life care key to reducing costs
Sept. 19 The Journal: Rockefeller visits Hospice
In the days immediately following his trip to Hospice of the Panhandle, Senator Rockefeller and his Senate Finance Committee colleagues sat down to mark up their proposed health care reform bill, and thanks to Cogswell’s impeccable timing, we know at least one Senator went into the talks with the hospice community on his radar screen.
Margaret was able to communicate her story and that of her patients to her Member of Congress face-to-face, which is a small victory for hospice congressional outreach. However, remember that you don’t need to have an in-person meeting with your Members of Congress to make a difference; make the connection between the hospice community and your Member of Congress with a video testimonial today!
September 2009 - Patricia Ahern
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Patricia Ahern
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Pat is the President and CEO of Rainbow Hospice & Palliative Care, a nonprofit, community-based program located just outside of Chicago, which serves more than 1,500 patients annually. She is a former President of the Illinois Hospice and Palliative Care Organization (IHPCO) Board of Directors, and remains active with the organization.
You might think that she has enough on her plate, but this nurse with an MBA is also among the most active Hospice Advocates through the NHPCO Legislative Action Center. And recently, she has been taking her Hospice Advocacy up a few notches by hitting the airwaves to set the record straight on end-of-life care and health reform.
During the August Recess, Pat was featured on a local television affiliate (WGN), taking on rumors of “death panels” in health care reform and educating the public on hospice and high-quality, compassionate end-of-life care options. She also served on a televised panel on health care reform, also on WGN, along with U.S. Representative Danny Davis (D-IL) and other local health care representatives.
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She has also recently had editorial content placed in the Chicago Tribune and has even found time to attend local Congressional Town Halls.
Pat is a great example of how to expand the reach of your Hospice Advocacy through local media outlets and through pounding the pavement. See her August TV clips here:
August 2009 Carol Clark
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Carol Clark of Casa de Luz Hospice, Tucson, AZ.
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Carol Clark has a real understanding of how advocacy works. In her role as the Volunteer Manager at Casa de Luz Hospice in Tucson, AZ, she advocates daily for the powerful impact of hospice care. As with hospice volunteers, Carol knows the difference that one person can make. Whether it is attending NHPCO’s Capitol Hill Day, hosting local elected officials at Casa de Luz, or offering a brown bag lunch for all of her colleagues to have the opportunity to take part in Hospice Advocacy updates, Carol implements advocacy into her daily activities. With the support of the Casa de Luz co-founders, Agnes Poore and Lynette Jaramillo, Carol works constantly to preserve hospice as we know it, so that they can fulfill Casa’s mission of providing “superior care to patients and their loved ones, so that they may complete their mission on this earth in comfort, dignity and harmony."
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July 2009 Todd Picou
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Todd Picou (center) with colleagues at NHPCO’s Capitol Hill Day 2009.
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Todd Picou wears many hats. He is the co-founder and Chairman of Hospice Care of South Carolina (HCSC). He is also a member of NHPCO’s Public Policy Committee and sits on the Board of Directors of the Alliance for Care at the End of Life. You’d think that Todd’s many hats would keep him too busy for Hospice Advocacy, but that is not the case. Not only did Todd and several of his colleagues make sure that South Carolina was well-represented at Capitol Hill Day 2009, but Hospice Care of South Carolina had more participants for NHPCO’s Inaugural Virtual Hill Day than any other single program. Todd and the leadership at HCSC make sure that their employees provide superior care at the bedside and take time to advocate for their patients through Hospice Advocacy.
By walking the walk and staying engaged in the public policy challenges and grassroots opportunities facing the hospice community, Todd is a shining example for his staff and all of us on how to incorporate easy advocacy into normal day-to-day operations.
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June 2009 Dale Hicks
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Dale Hicks with Texas Congressman Ciro Rodriguez during NHPCO’s 2009 Capitol Hill Day
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Dale Hicks is a man who knows how to turn a problem into an opportunity. As the President of Alamo Hospice in San Antonio, Texas, Dale has great interest in ensuring that the Texas Congressional Delegation, all 32 members, knows the value of hospice. As a long-time advocate, Dale also understands that advocacy can sometimes be a numbers game: the voices of many voters can be more persuasive to an elected official than that of a small few. So, when Dale found out that the already very busy Texas-New Mexico Hospice Organization did not have an active legislative body, he sprung into action.
Dale worked directly with his state organization leaders to build a legislative program. In fact, he did such a good job helping the state organization launch the operation, that he was made the state organization’s Legislative Chair! Now Dale finds time in his busy schedule to convene hospice representatives from the Lone Star State to network on advocacy opportunities and coordinate efforts. The result? Well under a year after the Texas legislative operation was launched, Dale led the biggest hospice state delegation through the halls of Congress for NHPCO’s 2009 Capitol Hill Day. An unprecedented 50 NHPCO members from Texas registered for Hill Day this year!
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Dale also incorporates advocacy into the day-to-day activities of running Alamo Hospice. He keeps in constant contact with the legislative staff of his federal representatives, and has positioned his program as a local end-of-life care resource for these Congressional offices. He networks at local political fundraisers, and even comes to D.C. a couple of times a year on his own to get some face-time with his Members of Congress. Additionally, Alamo Hospice recently joined the Alliance for Care at the End of Life, NHPCO’s 501(c)4 lobbying affiliate, through a monthly contribution that works for the small, growing program.
When asked why he takes on Hospice Advocacy with such enthusiasm, Dale says, “I truly love what we do, and derive great reward and satisfaction from being a part of the NHPCO.”
May 2009 SueAnn Reynolds
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SueAnn Reynolds, President-CEO of Family Hospice and Palliative Care in Indiana, and Kathy McMahon, President-CEO of Hospice and Palliative Care
Association of New York, at NHPCO’s Management and Leadership Conference.
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May’s Hospice Advocate Spotlight is on SueAnn Reynolds, the President and CEO of Family Hospice and Palliative Care (FHPC) in Berne, Indiana. She recently shared her experiences on how she got her community involved in hospice advocacy during a Public Policy and Advocacy Session at NHPCO’s Management and Leadership Conference. SueAnn’s account is a great example of how raising community awareness can result in actual outreach to elected officials.
When CMS issued its rule last year that would cut Medicare hospice funding and threaten the survival of many programs, SueAnn took action by organizing a local event to raise awareness about the value of hospice in her community.
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SueAnn and her team sent out invitations to the Community Celebration through her program’s quarterly newsletter, and placed ads in local newspapers. They paid special attention in inviting legislators and their staff by establishing a point of contact in their offices for follow-up calls as the event approached.
SueAnn also hit the airwaves through interviews with local radio stations and special appearances on the local PBS television station. One of her appearances on PBS’s “Senior Living” call-in show even featured NHPCO’s President & CEO Don Schumacher discussing the nationwide impact of the hospice funding cuts on patients and families.
The outreach worked. People within the community began contacting SueAnn and her office expressing concern, disbelief and even outrage that cuts were being made to hospice funding.
Over 100 people attended the Community Celebration, and more than 600 letters to Members of Congress were signed, urging them to protect hospice funding. The event also generated local and regional press coverage. And, as a follow-up, SueAnn and her team had the Community Celebration videotaped, and sent copies of it to the legislators along with the letters.
In the coming months, SueAnn and her team are planning another community event, and are continuing their outreach through the local media and, most recently, by participating in NHPCO’s Capitol Hill Day.
One community event helped generate 600 letters to Congress. SueAnn’s advocacy outreach activities can serve as a model for all Hospice Advocates in how to raise community awareness of hospice and turn it into meaningful hospice advocacy outreach.
Would you or someone you know like to be featured as NHPCO’s “Advocate of the Month”? If so, then please send us an email with your advocacy story, and why you think that you should be featured as NHPCO’s next Advocate of the Month. Also, please give us a brief description of what you do and include a picture. Please send responses to advocacy@nhpco.org.
April 2009 - Robertina Szolarova
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Angie Truesdale, Director, Public Policy NHPCO and Robertina Szolarova
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Robertina Szolarova is always answering the call to action. A call to action brought this RN to hospice very early in her career and a call to action brought her to pursue graduate work in a rare merging of disciplines, Public Policy Nursing. And, when her graduate program assigned a six week residency project for public policy, she called on NHPCO.
During her time as the 2007 Public Policy Fellow for NHPCO and the Alliance, Robertina took part in Capitol Hill meetings, planning and executing congressional staff briefings and had a contributing perspective in the legislative battle to protect hospice from Medicare rate cuts. You can read about Robertina’s experience in NewsLine November, 2008
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Later in 2008, when NHPCO issued a call to action for the hospice community to tell their stories as part of then President-Elect Obama’s information gathering for healthcare reform, Robertina facilitated a community forum and had the insights from the forum posted on the presidential transition website. Robertina is a shining example of where Hospice Advocacy can take you, both professionally and personally.
