Another Reason It's Hard for You to Get Help: Organizations Often Don't Collaborate


Another Reason It's Hard for You to Get Help: Organizations Often Don't Collaborate

hand-63751_640Last week, Jane (@jbones1961) sent me a terrific one-page PDF called "Everything Is Awful and I'm Not Okay: Questions to Ask Before Giving Up. A blog post, written by someone who struggles with depression, inspired the PDF. I loved the questions and I particularly liked the encouragement from the blogger to customize and share the document.

"No two people are the same; you are encouraged to customize this document to your own needs, abilities, and resource," the blogger includes at the bottom of the PDF.

Jane's message with the PDF arrived about a week after my epiphany that we can't wait any longer for the Centers for Disease Control and Prevention to track family caregiver stress and its source. It also arrived just a few days after I reached out to Health in Aging Foundation, which holds the copyright for the Caregiver Self-Assessment Questionnaire. I wrote about this questionnaire just about a year ago, as I started to think about caregiving stress as an epidemic.

I was involved in the initial development of the questionnaire about 15 years when a researcher at the American Medical Association created the tool. At some point, the AMA sold the questionnaire's copyright to Health in Aging Foundation. So, on Monday, November 30, I called the foundation to ask about using the tool to track the stress of every family caregiver I could.

I spoke with a staff member and explained my goal: To distribute the questionnaire to all family caregivers. I explained my relationship with the questionnaire--that I had been part of its development. I asked: Could I add my logo to the document? Could I adjust the resources listed? (One of the resources listed is the Medicare hotline. Unless Medicare answers questions about how to mange your stress, I'm not so sure that's a helpful resource given the purpose of this document.) If I couldn't do either of those, could I make the questionnaire available on

The answers: No. No. And, no.

I then received a follow-up email that stated:

"We are unable to grant permission for you to modify it (whether by adding your logo or changing the resources) or to share it
directly on your site. However, you may provide a link on your website that links to the Caregiver Assessment Questionnaire on"

Honestly, I was pissed. I'm trying to help family caregivers. I'm trying to make it as easy as possible for family caregivers to take an assessment which should be readily available to them. I'm happy to give the foundation credit in any blog posts I write about the questionnaire. Of course, the foundation's contact information and logo would remain on the questionnaire. When I distribute the questionnaire to family caregivers, the foundation receives greater visibility.

To me, that's a win-win. I use what you've created, tweak it to make it relevant, help family caregivers and bring attention to your organization.

Instead, because I encountered a lose-lose, I just came up with my own simple survey, "How Stressed Are You?"

I couldn't help but compare the foundation's response to the blogger's "please distribute me" policy. Think how many people the blogger will help. (I'll customize that PDF and share with you next week.) The foundation, with so many more resources than either the blogger or I have, could help so many with a selfless attitude about the questionnaire's use. Instead, it chooses to protect its own interests at the expense of the greater good.

I'd like to say that my encounter with the foundation is unusual. Unfortunately, it's not.

And, that's just another reason why it can be so hard for you to find and get help. Within the industry of caregiving, many organizations make their agendas their top priority and collaboration often isn't the priority.

I do know this: It's hard to really help when you hold on too tight.

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<a href='' rel=\"nofollow\"><a href='' rel=\"nofollow\">@denise</a></a>, I'm so sorry... It does seems there are so many organizations out there and they really don't do a whole lot either. I recently received an email from Caregiver Action network. I had signed up there a LONG time ago and don't remember any emails in ages and ages. This email only had links to news articles on the internet. Seems like they don't take much action.... I have gotten more help from you in \"real resources\". Hum, just wondering how we can get you the help you need....\n\nIt seems there is money thrown at so many different agencies and they all fall short.\n