csiblog

Carespace.com is officially “Open for Business"

Well, it has been several months since we last posted to the Carespace blog. I am sure at least my family noticed. The reason for the silence is all efforts have been inwardly focused on building the Carespace product itself.  In addition, navigating the myriad of issues you face when launching a start up in an economic apocalypse has taken up a bit of time. I guess it helps a bit to be deeply passionate and committed to what you are trying to accomplish. If Carespace isn't a passionate endeavor, then I don’t know what would be!  Paul Graham from ycombinator, a well known start up incubator, has an interesting video  on this topic at StartupSchool.org. If you want to learn more about this subject it is definatly worth the 20 minutes.

I would also like to announce that after months of development effort, we are now officially “Open for Business” at CareSpace.  I hope someday find it funny that the final push to get the site up and running came in October of 2008 - which will certainly be forever engraved in the economic history books. Over the last few days we have moved the official CareSpace site into production.  You can now register and officially enter the site. After registering, you will receive an email verification before you can login. (Make sure to check your spam box.) Click on the link in the email, enter your email and password created at registration, and we can start our journey to make life easier for the millions of people who care for loved ones with disabilities or serious health issues.

We are very excited about the potential of the site.  We are also equally grounded in what we still need to get done. There is no question the site still needs some work.    What is also undeniable is that we have officially opened the doors for business.

We have one goal – 6001 registered users in two weeks. Why 6001? It is rumored that Facebook had 6000 registed users in its first two weeks.  I figured it would be fun to grab at least 1 more user. If we get to 6000 registered users I am sure we can find at least 1 more.

Come on in and try out the site. Some applications are still not up and running but you can certainly get a feel for what we are trying to accomplish with the project. Our first objective, beyond getting a good base of registered users, is to perfect the “Benefits Finder” application.  This application was created to make it easier to find supplemental benefits.  Benefits are submitted by the community.  It is very easy - it will take you about 1 minute to add a benefit.  Just think of all the people you could help by making it easier to find benefits they might be eligible for.  I will be posting a lot more about the benefits finder application as we get the community going on it.  I think the timing is ideal for this application. Who wouldn’t want to find a way to save a little money in today's environment?

Look forward to hearing everyone's feedback on the site and communicating more regularly on our progress.

Gotta run - 5991 more registered users to go.

Brian

The Carespace Community Is Talking

We launched the Carespace private beta last week to a small group of family and friends. Slowly but surely, as the caregiver community gets comfortable with the new landscape, conversations are starting and people are telling their stories. Some of the topics that have come up just in the past week include:

•    Helping an adult diabetic deal with dietary restrictions
•    How to apply for a handicap placard in Massachusetts
•    How to get special infant formula on ebay
•    Looking for wheelchair ramps
•    Where/how to get gently used medical equipment
•    When to take the car keys away from an elderly parent

We’re about to invite a larger group, about 100, to participate in the site and see how that goes. We’re learning about what works and what doesn’t, what’s useful and what’s not. One thing we’re sure of is that feedback and input, and ideas from members of the community, are priceless.

We expect we’ll be contacting you soon to join us in the conversation at the beta site. If you haven’t already done so, please sign up at carespace.com to get news and updates about the beta, and to sign up as a participant.

Thomas Falconer
carespace.com  

Reflecting on the Launch of Our Beta Site

Last Thursday, the first version of our invitation-only beta site went live. We took a quick opportunity to thank the many friends, contributors and investors who have helped us get this far – and by the weekend, we were reassessing everything we’ve done up to now.

There are many lessons to learn from how other online communities have succeeded, but the first lesson is that every successful transformational platform has created its own model and solved the riddle of appealing to and serving its unique audience. An ambitious young company with a big idea, Carespace is no different.

Today, people who care for children, seniors, spouses or partners, and themselves try to find each other through many different channels -- online, in their local communities, through philanthropic orgs, at churches and synagogues, and so forth. We believe finding each other and sharing information should be much easier. The current activity at Yahoo Groups proves that more and more people caring for loved ones feel comfortable communicating online – but the information found there today is gone by tomorrow, and Yahoo members can’t benefit from the knowledge of caregivers outside of their specific group. Let’s preserve the advice and insights we share – and create tools to leverage all that knowledge. There are many common needs across all caring types. Everyone I meet who has an active voice in this community strongly agrees.

But core beliefs alone don’t create communities – or the platform on which they can thrive. It’s clear to me that building out the community beyond this first version of our beta will require the collaboration of community leaders who believe in the basic principles behind Carespace. That’s why we’re going to take a step-by-step approach to assembling the Carespace platform and community – by embracing existing groups, and engaging with leaders who want to start new groups, small and large. We’ll start with groups helping parents of children with special needs -- an area and lifestyle I know well. Very soon, we’ll add groups for spousal/partner and eldercare.

There are lots of reasons for approaching the puzzle this way – and we’ll be talking a lot about the reasons behind our approach on the blog.

Going forward, we’ll devote The Carespace Blog to sponsoring a dialog for everyone interested in topics that span this important but underserved demographic – leaders of support groups, advocates for change who work in not-for-profit orgs, health writers, service providers, academic thinkers, civic leaders, marketers – and most important of all, the community itself. The blog will also comment on innovations that can improve our ability to care for the ones we love.

I blogged earlier about how the splintering of the caregiver demographic into thousands of active pieces tends to dilute the influence of the whole. But we’ve got to empower the pieces – those engaged groups of people committed to the well-being of their loved ones – before the whole will recognize itself as a powerful community. As we do this, we’ll connect more and more people, and aggregate our combined knowledge.

If you believe in these values and ideas, we want to hear from you. If you don’t believe in them, we’d also like to hear from you.

Brian Costello
CEO, Carespace

Carespace.com On Its Way

I haven’t posted a blog entry for a few days, and here’s why – the Carespace team has been working to get a beta version of our new site, carespace.com, up and running. We’re testing internally right now, and we’re planning to launch a private preview to a group of friends and family in just a few days.

This important stage will let us gather critical feedback on how carespace.com works – things like registration, profiles, discussions.

We’re pretty excited that we’ve come this far, and that we’re getting close to bringing carespace.com to caregivers everywhere.

Our excitement about and passion for Carespace stems from our belief that there is a real need for a place where caregivers can offer the benefit of their experiences, where they can honestly and frankly share their feelings about their lives as caregivers, and where this collective wisdom transforms into something else—something more powerful than each of us alone.

A 2006 study by The Pew Internet and American Life Project revealed that, between 2002 and 2005, there was a 54% increase in the number of adults who said the internet played a major role while they helped another person cope with a major illness. And our research tells us that most of the information for caregivers on the internet is about the person we’re taking care of – there’s very little available about taking care of the caregiver.

We also found that there’s really no place online for caregivers to go to share experiences for the collective good – I’m not talking about venting, although that has its place, too—but the actual exchange of valuable, useful advice, knowledge, wisdom.

So stay tuned as we tweak and tune carespace.com. I’ll be keeping you posted.

Thomas Falconer
Editor-in-Chief

Giving A Voice To Our Community

The message is spreading that the disability numbers in the U.S. are large and growing.  The Special Parent Blog recently published a great article entitled “Attitude Is Everything -- Disability Awareness Month Indiana.”  That blogpost strongly relates to one of our main goals at Carespace - to advocate for issues that transcend areas of disability.

The blog offers a startling summary of the number of people with disabilities in the U.S.  Indiana’s disability population is tabbed at 17% or 1 in 6 people. The blog also references the U.S.Census Bureau's data on disability, estimating that 19.3% or almost 1 in 5 people have a long-term disability. Incredibly, 19.3% doesn’t include children under 5 or people in institutions. We also posted an entry on the numbers a few weeks ago.

Now consider that there are at least 50 million family caregivers who spend a significant amount of time caring for the 10% of the population or 30 million severely disabled people. That calculates to 80 million people -- 30% of the population -- with a direct interest in areas of disability.

You’d think any interest group of this size would wield major influence on the political scene.  So why does such a large and passionate demographic exert so little influence to affect positive change?  I’ve thought long and hard about this and have come to a few of my own conclusions.

First, the demographic is fragmented and focused on specific disease- or disability-states. What I mean is that most people don’t identify themselves in the demographic’s most general terms -- as a “caregiver: or a “disabled person.” You need look no further than Facebook, which has a good sample of the population, to verify this. In Facebook, there are many more groups organized in specific areas of illness or disability -- Autism, Parkinson, Down Syndrome, Leukemia-- than there are groups organized around family caregiving or disabilities in general.

It's natural to become an advocate for a specific area or cause.  In fact, my wife and I did just that -- and we continue to advocate for support related to our daughter's mitochondrial disease.

But wide-scale public awareness is what drives change, and the aggregated voices of large communities can be the triggers. The massive fragmentation of our demographic limits our ability to mobilize, or even be perceived as a huge population with common needs.

For instance, suppose caregivers wanted to influence what research programs get funded at the National Institute of Health ("NIH"). It’s no secret that the NIH spending could be more efficient. When we approach the politicians via our individual verticals and without political support, our voices have minimal impact.

So what we’re doing at Carespace is building an online platform that encourages caregivers  to continue to operate in their micro communities --we think this is important -- while enabling people to identify with the larger caregiver and disability community. Most important, all of our collective knowledge will be captured, set in place so future caregivers can leverage our experiences.

Brian Costello
CEO, Carespace

 

The Power of Us

I’ve been re-reading a book entitled Wikinomics: How Mass Collaboration Changes Everything, by Don Tapscott and Anthony Williams (Penguin).  The reason for the re-read  is that here at Carespace, we ‘re building a platform for participation and collaboration, peer-to-peer  many-to many communication and knowledge sharing. And Wikinomics is an essential text in the field of online community.

As caregivers, we here at Carespace have used the web regularly to find information on medical diagnoses, on medications, on patient care, on disease stages. And our surveys tell us that most caregivers use the web to find similar information.

What we haven't been able to find are sites where we can talk to other caregivers about our own lives, not of the people we take care of, whether that's a child, a parent, a spouse/partner, a friend, or a sibling. A friend of mine who has a 17-year old son with Autism expressed frustration with the lack of places on the web to talk frankly and honestly about her emotional ups and downs, about her anguish and her joy. Others have told us that their desire to connect with other caregivers online for emotional support is deep.

As  described in Wikinomics,  this is “the power of us,” or  “unleashing our collective genius,” and “harnessing the power of your peers.” So what does all this have to do with caregiving and caregivers? Well, when we put our collective caregiver heads together, we become more powerful, more energized to do the work we need to do, more aware of what others are doing to get through the day.

The participation platform we're building provides opportunities to tell your story, talk about something you’ve learned along the way, or to ask a question or start a discussion, and to build a profile so others like you can find you.

We hope you’ll join us in building this community of caregivers. Go to carespace.com to sign up for news and updates about the launch. And please comment here and tell us what you think, need, desire, from a platform such as the one we’re building.

Thomas Falconer
carespace.com

Special Needs Parents Post Petition

The Special Needs Parent blog pointed me to an online petition that proposes to lobby the U.S. Congress, U.S. Senate, State Congressmen, State Senators, and Governors for tax breaks associated with caring for a special needs child.

I don’t have to tell you that our entire health care system is under intense scrutiny and a source of great debate as we head toward a presidential election. Our opportunity as parents of special needs children to inject our voices into that debate is clear.

So take a look at the petition, sign it, and pass it on if that suits you. I couldn’t sign it fast enough. I’m signature number 10,123.

Brian Costello
Carespace.com

Caregiver Issues Largely Unacknowledged

I was talking with Brian Costello, the CEO of Carespace and my colleague on the Carespace team, about the turmoil caregiving brings to our lives, especially in the beginning of the caregiving process. We tossed around the concept, too, about that defining moment when a caregiver realizes that their situation is real, and requires some quick, and some ongoing, research.

Their are millions of caregivers in the United States. We’re a huge demographic, so why don’t more of us identify ourselves as caregivers? In some cases, our work lives or other pursuits characterize us -- in other cases we are simply too overwhelmed to think about our lives as caregivers -- we feel abandoned and alone.

Most of us do not choose to become a caregiver. All things considered, we and the people we are taking care of would be much happier without this issue in our lives. Our introduction into the world of caregiving usually comes after obtaining a diagnosis. Then we begin the arduous process of finding information on the array of issues involved in all aspects of caregiving. As we at Carespace have found, it is difficult to find information you can trust, and it is very difficult to find other caregivers.

For the person suddenly faced with caregiving, of a child, parent, partner, or spouse, life changes in every way. The financial burden alone can be shattering. Emotions go on a roller coaster ride. There are legal issues to grapple with, lifestyle changes, in some cases even home construction projects to plan. Scheduling is paramount, and time is a precious commodity. Still, the emotional extremes and real issues caregivers experience have gone largely unacknowledged.

There is no monolithic, unified voice for caregivers -- no union, no lobbying group, no political action committee. It’s time for that to change. We’re not alone, we don’t have to struggle along by ourselves, and there is much to be gained from our collective wisdom. Each one of us has a unique story to tell from which all of us can learn, through all of the stages of caregiving. Our mission at Carespace is to provide the platform and the opportunity for all of the diverse voices of caregivers to have a place to connect, talk, share stories, ask questions, get answers.

Thomas Falconer
Editor-in-Chief
Carespace.com

60 Million Family Caregivers Largest Source of Long-Term Care in U.S.

“I see a caregiver in every person I meet,” said a friend of mine who is a geriatric caseworker. “The longer a person is an active caregiver, the more aware that person becomes about the vastness and seriousness of the caregiver experience in our culture.”

It’s a remarkable irony that even though each of us will most likely face caregiver responsibilities at some time, most Americans are unaware of -- or simply don’t think about -- how many of their neighbors are also caregivers. So how many caregivers are there? How and under what circumstances do we define “caregiver?”

We usually think of the informal or family caregiver as one who takes care of a child, a parent, a grandparent, a spouse or partner, or a friend who is otherwise not able to take care of  herself because of a serious health issue or disability. There's more though; a person managing meds for a spouse with adult onset diabetes who is otherwise capable may or may not consider himself to be a caregiver.

Gail Sheehy's recent Parade Magazine cover story titled “How Can We Help Our Nation's Caregivers” pegged the number of caregivers in the U.S. taking care of adults at 44.5 million. An additional six million take care of children with mental or physical disabilities. And that figure doesn’t take into account multiple caregivers, which would increase the number by four to six million. This adds up to 50 to 60 million caregivers.

According to the National Family Caregiver Association's random sample survey of family caregivers, in 2000 there were more than 50 million caregivers. Using a conservative compounded annual growth rate, that figure rises to 60 million caregivers in America today.

The Family Caregiver Alliance says there are 52 million informal and family caregivers providing care to those aged 20-plus who are ill and disabled. If you add another 10-12 million below age 18, their estimate exceeds 60 million caregivers.

A 2004 study by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons AARP) estimated that 21% of the U.S. population provides unpaid care to friends and family 18 and older. This translates into about 44.4 million caregivers. But once again, this study did not include those providing care for children under 18.

Regardless of the actual number, the commonality within the broader community of caregivers has the potential to be powerful and empowering:

1. As unpaid family caregivers, we are and will continue to be the largest source of long-term care services in the U.S.
2. Our need to connect with other caregivers for information, emotional support, and for just plain talk about our lives as caregivers is critical.
3. We always get our best information from other caregivers, when we can find them.

Let me know where you go for the kinds of support I’ve been talking about here. We’d love your help in building Carespace, a place where we can all benefit from our formidable collective wisdom.

Thomas Falconer
Editor-in-Chief
Carespace.com

Welcome to the Carespace blog

Over the next several months, we'll be talking with you about the launch of Carespace.com. We're building a website for the caregiver community, a place to go to find each other, ask and answer questions, discover solutions, and share our insights and collective wisdom.

There are millions of caregivers taking care of a child, a parent, a grandparent, a spouse or partner, a friend. We  surveyed hundreds of them, met with professionals and academics in related disciplines, and spoke with potential sponsors.

In the course of our research, we discovered some interesting things:

• 75% of respondents to our survey use the Internet at least 2-3 hours a day.
• 65% belong to a social media site such as MySpace or Facebook, however,
• 85% said that it is challenging to find ways to connect with other caregiver parents.

Next, we went off to develop the first version of Carespace, now being tested privately by a segment of the caregiver community.

Nell Casey, a Carter Center health journalist, puts it this way in the introduction to her new book, An Uncertain Inheritance: Writers on Caring for Family: "Seeing a family member through a health crisis is an experience that nearly everyone must face...and yet caregiving, as a rite of passage, is only just beginning to enter our cultural consciousness."

We couldn't agree more. Carespace has the potential to become the largest and most trusted source of relevant information and shared wisdom on issues by and for caregivers. We're thrilled to be building this community with you.

Thomas Falconer
Editor-in-Chief
Carespace.com