I was sending out the press release on Sunday’s Super Open House. I sent it to one of the shows on my local NPR station. They responded with an nice e-mail thanking me for contacting them, and explaining that they were contacting me on behalf of the newsroom. Here is their e-mail:
Thanks for contacting KPCC about cargiving.com and The Madeleine Brand Show. I’m not responding on their behalf, however, I’m writing to you with an invitation from our newsroom to help us discover some interesting new stories to report about health care and caregiving.One of the ways that KPCC journalists look for stories is by circulating questions to the public, inviting them to share their experiences on topics in the news that matter to Southern Californians. I’m wondering if you would be so kind as to circulate our health care questions to readers and bloggers at caregiving.com? While I can’t promise that we will use everyone’s stories on the air, I can tell you that every experience that is shared with us is seen by our health reporter and editor, and is used to help inform our future health care coverage.Here is some language you are welcome to use or adapt in a note to the group on the blog:Reporters at KPCC, Southern California Public Radio are interested in hearing caregivers’ experiences of helping loved ones through their health challenges. We’re interested in knowing how caregiving has changed your own life plans, the financial aspects that come with caregiving, and in getting a sense of what under-told stories we might bring to the public. Here is the link to use to share your experiences with KPCC journalists. http://www.scpr.org/network/questions/healthResponses are confidential so nothing you share is aired or published without your permission. Your insights are used only for journalism and are seen only by trusted journalists in the Public Insight Network. A KPCC journalist will respond directly to you.Thanks in advance for any help you and provide in circulating our questions to the caregiving public.
If you are interested in sharing your experiences, you can click on the above link and provide your input. They ask about what health stories they should cover and why and how you are personally involved in that issue. That would sure be easy for any of us if we write about caregiving! Your input could be just the story to shed light on being a family caregiver.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
roaringmouse
G-J, Can you tell us more about the show and why you picked them to give information on Caregiving.com? It would help me to understand some background as to what they are looking for from Caregivers. This is an awesome idea. Thank you for sharing. I hope many will take you up on this.
G-J
Well, I contacted KPCC, the area’s NPR station. I usually listen to The Madeline Brand show which is an hour long, M-F and hits on a number of topics quickly. They do a parenting segment weekly, and I’ve been suggesting that they should do a caregiving section (with Denise!) on a regular basis. I had hoped that they might mention the Super Sunday Open House on the air, and maybe they still will.
I really like Air Talk with Larry Mantle. His show is on M-F 10-12 and he spends about 30 minutes on four different topics each day. His is more in depth.
Finally, I also thing the cost of caregiving would be great on Marketplace, a 30 minute afternoon show.
I hope that by providing information to KPCC about being a family caregiver, they might find a fit for a story or stories in one of these shows. You never know!
kristin
This was cool. I responded, gave them an earful, and hope they will follow up with some caregivers about the issues we face.
Trish
Wow! This is great, G-J! Good work. I hope they follow up and highlight some of these caregiving stories. Great idea about Denise doing a segment. I’ll keep my fingers crossed!
roaringmouse
G-J, Thanks. Great info! ..I’ll call them later today.
(Jumping ahead…) So do both you and Denise have plans to advertise the fundraising book when on the show?
Denise
Thanks so much, G-J. I am sooo grateful for your help!! And, thanks for sharing this with everyone–it’s great that everyone has a chance to voice their experiences.
roaringmouse
FYI…I put in a posting and gave them lots to think about too!
roaringmouse
Ah…found it! Sorry couldn’t remember where this was!
Here’s part of what I said and their response….please advise your thoughts as I need to respond ASAP.
>>>>>>>>>>>>
——– Original Message ——–
Subject: KPCC — Health
Date: Mon, 6 Feb 2012 15:02:53 -0800
From: McNary, Sharon
Hi Laura – Thanks for your insights on caregiving and for suggesting a few topics. I agree that emergency response for people who are disabled and their caregivers is a good topic. I’ll be sharing your note with our health care reporter.
Can you share a bit more information about what you and your family went through during and after that hurricane? What gaps in the emergency response system did your experience reveal?
Meanwhile, thanks also for being part of KPCC’s Insight Network of news sources for public radio. Your participation helps us find stories that might not be on our radar and helps us cover the news in a more people-centered way. As always you are welcome to tell us more about yourself and pass along your ideas for news coverage.
Sharon McNary
Public Insight Journalism at KPCC
Southern California Public Radio
| http://www.scpr.org
—————–
Every person can be a news source, and improve news coverage. Want to help? Join KPCC’s Public Insight Network
Below are parts from my initial survey responses./
Q: What health issues matter most to you?
A: Affordability|Public policy|Insurance|Prescription drugs|Some other issue
Q: What specific health news story should we cover and why?
A: Caregiving. Because the amount of caregivers both private and family is staggering and their issues are underserved by society. Have you wondered how they continue to pay bills with a smaller income yet now have two full time jobs and one isn’t paid for? Have you ever wondered how they take care of their loved ones and manage the rest of the house …including perhaps small children? What about a disaster? – What role does the caregiver play and how can they protect their loved one? Why does the caregiver have to give up their life to prevent their loved one from being penalized from not having access to community services? Why are many caregivers forced to place their loved ones into nursing homes instead of receiving assistance at home; providing both better quality of care & less costly quality of care?
Q: How are you personally involved in this issue?
A: Due to an experience of a hurricane while 9 months pregnant and my husband 6 months recovering from a spinal cord injury…I have spent the past 6 years advocating for equal accessibility of emergency management design for the Disabled and Access & Functional Needs communities. I also in the beginning stages of advocating for Choice Centered Medicaid where funds follow the person.
Q: What are the sights and sounds could we record on audio and video about this topic?
A: Sounds: Talk with caregivers and let listeners hear the fear, concern, lack of sleep, humor and advocacy in their voices. It says volumes! Sights: Have you ever followed a caregiver for a day? Watch how they deal with Dementia, Alzheimer’s, a wheelchair through home, medical offices, the store or even a restaurant!
Q: What else should we know about this? Who else should we contact?
A: I think if you covered caregiving you would become the radio station’s advocate for caregivers and increase your listening audience. Many caregivers like myself love to freely advertise community items that they feel others should know about. I strongly think you should contact Denise Brown at Caregiving.com for more information. She is the caregiver’s advocate and runs a great site that is actually “for” the caregiver rather then needed products. She really tries to encourage the caregiver to grow beyond their situation and rise to the merits that they so richly deserve.
Q: Do you know yet how your own health care will change under the new federal health care bill?
A: We don’t have to wait. We are seeing it already. Doctors are refusing to see my husband because he has Medicare and we can’t get supplies because he has ‘Care.
Now we’d like to ask some biographical questions to better understand where you are coming from. You are not required to answer any of these and any information you give us will remain private within the newsroom.
Q: What do you do for work?
A: Wife, Mom, Caregiver, Disability Resource Advocate/Emergency Preparedness Consultant, etc.
Q: To what health-related organizations do you belong?
A: Gwinnett County Emergency Preparedness Committee Disability Advocacy Council – SOFLACIL National Center for Independent Living (NCIL) Emergency Preparedness Dora’s Hope
G-J
Great input, Laura! That’s awesome! My advise is to continue to give them your frank and honest input. You have a perspective the rest of us do not, but that is important to all of us.
For example, whenever they talk about earthquake preparedness, they state that you should have a certain amount of prescription medication in the earthquake kit. How exactly are you supposed to do that? It’s not like we have extra ever.