“Do’s and Don’ts of Meeting with Legislators in the Home District”

We were happy to host Hannah Wesolowski from the Public Affairs Council today to discuss “Do’s and Don’ts of Meeting with Legislators in the Home District.” It was super informative and the video is posted here for those of you who missed it.

TonyLiveAnd here we catch the elusive Tonius Kudneris in his native element…stalking an internet connection…

You may have noticed that we have been trying out some new technology lately, all designed to get you more and better information. We are using Facebook and Twitter more, and running call-in and video webinars as well as today’s LiveStream event. It takes a bit of doing, but we think it helps us serve you better.

In that vein, do you like it? Is it working? Do you always want a call-in number? Do you prefer video-only sessions? Do you like the use of slides? Do you find our Facebook and Twitter posts to be useful and engaging? Do you have any topics you really need a webinar/LiveStream about? I am open to ideas, and once we get past the Advocacy Intensive next week, I will start planning out new content for the Fall. I’d love to have your input!

We want to hear from you! Let us know how we are doing in the comments below!

Heading Into the Home Stretch!

TonyDarcyWe are buzzing along like a finely-tuned machine here in the HAN offices….if a finely-tuned machine ran on iced coffee, take-out food, and spreadsheets. We have completed two of the three preparatory webinar offerings for the impending Advocacy Intensive (SIGN UP IF YOU HAVEN’T ATTENDED ONE YET!), and have received some great questions from you all!

We will also be hosting a special LiveStream event at 3:00pm EST Wednesday. Hannah Wesolowski from the Public Affairs Council will be speaking with Tony regarding “Do’s and Don’ts of Meeting with Legislators in the Home District“. This is a great way to start planning for your Member of Congress to visit your hospice during the August recess, and is relevant to those attending the Advocacy Intensive as well as those advocating from home.

Speaking of those of you playing “Advocacy Intensive- the Home Game,” look for a special email coming out about our Virtual Hill Day. We will be live broadcasting on Tuesday morning, 7/14 from the Regency Ballroom at the Hyatt Regency Capitol Hill. You can participate in the Pep Rally and help support your advocates on their way to their Hill Meetings!

As a part of the Virtual Hill Day, we will have another Click2Call campaign, similar to last year. We will be asking all of you playing the home game to use our module to call, Facebook, and Tweet your Members of Congress– all while your friends will be there in person! It is a multi-pronged approach to make sure we get Capitol Hill’s full attention!Wood

So stay tuned for all these exciting events. We will be busy stuffing envelopes, making badges….and building a tree-house? What is this? Who ordered it? What is it for? I guess we will have to wait to find out….

I am hoping for a tree-house.

Care Planning Act is Burning Up the Internet!

Another strong article yesterday by Bruce Japsen and featuring our own Jon Keyserling in support of the Care Planning Act. We are so happy to see this getting serious traction in the news and on the Hill!

 

In the lead up to the Advocacy Intensive, it is important for our advocates (both at home and in DC) to think about their hospice stories. Did you have a patient who would have benefited from having something like the Care Planning Act? Did you know a family that was able to have a beautiful end-of-life experience because their loved one had a clearly established plan? Think about your experiences in the context of this proposed Care Planning Act, and be ready to tell these stories to your Members of Congress, both in person and via our Virtual Hill Day.

 

 

Why Younger People Should Support the Care Planning Act

 

Tamar was 26, and had been married for 4 years with a 3-year-old son whom she adored. In 2014, Tamar was diagnosed with spindle cell carcinoma. She passed away July 22, 2015.
Tamar was 26, and had been married for 4 years with a 3-year-old son whom she adored. In 2014, Tamar was diagnosed with spindle cell carcinoma. She passed away July 22, 2015.

Former Senator and heart surgeon Bill Frist published a column in Forbes Magazine yesterday voicing his support for the Care Planning Act, among other initiatives. He makes an important point when he says, “Americans are living longer than ever, and children are increasingly helping aging parents and grandparents manage multiple chronic conditions.”

I am not even thirty-years old, and I know several other people my age who have already had end-of-life conversations with grandparents, parents, and even siblings. However, end-of-life care is not something people my age typically think about, so when we are placed in the caregiver role, we have often never had a conversation about our own wishes, much less the wishes of the person now under our care. Many of us have little to no experience with navigating the healthcare system. It can be a scary, divisive, and lonely time.

But imagine this as a part of standard care: an interdisciplinary team of doctors, nurses, social workers, and others are there to help guide us through this difficult time. We don’t have to spend hours on the phone calling around trying to get questions answered. We don’t have to guess about options or our loved-ones wishes. We don’t have to agonize over making the wrong decision. We have one team, informing and guiding both the caregiver and the patient through making their end-of-life plan.

The Care Planning Act does this. It establishes reimbursement through Medicare for healthcare professionals to provide a voluntary and structured discussion about the goals and treatment options for individuals with serious illness. It facilitates information-sharing and decision-making to ensure that the patient’s wishes are known, and that the caregiver is informed and empowered to carry them out. This is patient-centered care at its heart. And I know for me, as someone whose most serious personal experience with healthcare is limited to getting her wisdom teeth removed, having a team on my side guiding me through this difficult time would be invaluable.

So I know many people my age do not think about death, dying, end-of-life care, or hospice on a regular basis. But that is precisely why we need the Care Planning Act. We need information and support in this difficult time, if not yet for ourselves (though perhaps one day), then for the people in our lives who may someday suffer from advanced illness.

Just my two cents.

 

Click here to support the Care Planning Act!

Holy Registrations, Batman!

In the past 36 hours, we’ve logged a solid 50 more registrations for the Advocacy Intensive. We are currently at 238 attendees! That’s nuts! We are going to hit our cap of 250 to be sure (which makes boss-man Tony happy). Just to break it down:

  • We have someone from 47 out of 50 States!  Know any caregivers from Alaska, Mississippi, or New Mexico? Send ’em our way!
  • We have CNAs, RNs, LPNs, MSWs, Chaplains, Bereavement Counselors, Volunteers, Admins, Resident Managers, Care Coordinators….any title you can think of, we’ve got at least one!
  • LOTS of first-timers too! We can’t wait to meet you!
  • California is currently leading with the largest delegation, but New York and Virginia are putting in a strong showing as well!

These were our badge supplies…I think we’re going to need a bigger boat…or I mean, container!

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Definitely not going to be enough….

Don’t forget, registration CLOSES ON FRIDAY! Feel free to reach out to me at info@nhpcohan.org with any questions! Tweet us @HospiceAction with what you are excited about learning at the Intensive, and I’ll enter you into our Monuments Tour Drawing! Just use #HAN15 in your Tweet!

See you all in July!