The responses to my last post illustrate some of the many takes on the word "caregiver." I'm grateful for all of them. Intense feelings about who we care for often supercede more general ideas around "caregiving." So much so that any talk about grouping us together sometimes seems to detract from the individual experience.

At the same time, we know that parents of children with different illness or disabilities have a lot to share by way of information and support -- even though when we do go looking for others, our search usually follows along the trail of a particular medical issue.

So I'll be direct about the challenge of building the community for Carespace. I know that Carespace must be valuable and inviting to a mom and dad with an autistic child who want contact with others just like them. I also know that they may benefit from interaction with all sorts of moms and dads. (Not to mention that they may also be caring for an elderly relative.) But the reality today is that we haven't established the idea of a global community of "caregivers." It's not yet ingrained in the overall dialog. To make this concept useful, we'll have to discover the value of links between different "caring types." This is something most of us will have to experience before we take it for granted.

I have a related question, because I've been thinking about how bloggers could grow their audiences through the Carespace community: Do you believe that bloggers -- the vast majority of whom write about very specific illnesses or disabilities -- can or should play a significant role in broadening our perspective and creating helpful links between what are now separate camps of (what should we call ourselves?)  caregivers? Thanks in advance for your opinions!

Ron Slate

Recently I had a conversation with Nell Casey, the healthcare journalist who edited An Uncertain Inheritance: Writers on Caring for Family (William Morrow 2007). Nell mentioned in passing that "people generally don't call themselves out as 'caregivers.' " There seems to be a gap between how people who care for loved ones think of themselves, and how thought- and influence-leaders describe the community at large. And that's just the point. To influence policy and practice, leaders employ the term "caregiver" to distinguish millions of people from the overall population and to suggest their commonality. But the ones caring for a child with special needs or a grandparent with dementia think of themselves as people, not caregivers. People selling things on EBay don't think of themselves as "auctioneers." A person posting a video on YouTube doesn't think of himself as a "videographer." But if these people needed laws passed in Congress, their lobbyists might use such labels.

It's a plain fact that huge parts of a population may not get recognition until their interactions become visible to everyone else. Not long ago, teenagers and college kids weren't seen as a powerful group by marketeers. Today, youth culture deeply affects the culture as a whole. Just look at Barak Obama's appeal to youth and how far it's taken him. Facebook, as a networking location on the web, has played a big role in turning "young people" into what everyone else sees as a group phenomenon.

But "caregivers" haven't yet reached this level of group identity. We haven't yet had adequate ways of finding and reaching each other -- and the world of service and product providers hasn't yet created a productive dialog with us. The community at Carespace has the chance to make a dramatic difference, just as YouTube and Facebook have. 

Do you have an insight as to why caregivers don't call themselves out as such?

Ron Slate, CMO, Carespace

On taking responsibility for an elderly parent, many of us hustle to the library or bookstore for the latest how-to books on managing the issues of aging. I wouldn't persuade you to do otherwise. But I would encourage you to obtain a copy of Kathy Phillips' The Moon on the Water. In 34 brief chapters, Phillips tells the story of how she moved her father from her girlhood home in New Jersey to her place in Hawaii. (Phillips teaches English at the University of Hawaii.) The episodes alone would provide both guidance and inspiration. But Phillips' does something more. She introduces us to a mythic Chinese figure often depicted in ancient art,named Kuan Yin. Known for her compassion, Kuan Yin  (whose name means "the one who perceives the sound of suffering") calmly faces the inevitable pains and difficulties of life, aiding others. It is this universal human quality that inhabits the telling of The Moon in the Water. The story-teller's voice is honest but not bleak. Her eye takes in every charming and sad detail. The writing has a quietly moving effect on the reader. Avoiding sentimentality, Phillips is a master of sentiments.

Phillip's father Marvin had been a fireman and a brakeman, a man who had seen a lot in his life and who now was equipped with a defibrillator and whose memory was fading severely. As we listen to Phillips describe their daily challenges, we barely notice how much information we are absorbing. The move to Hawaii brings with it many relatively small bureaucratic issues that add up to a series of delays and endless tasks. Marvin's railroad pension must now be deposited in a local bank; to open an account, he needs a state ID with picture. To get a state ID, he needs a birth certificate. Then comes the transfer of Marvin's health insurance from state to state. Phillips contacts the Hawaii Medical Service Association (HMSA):

"An HMSA worker, Harriet, sends me six booklets to choose form, each fifty pages. Hazarding the "65C Plus" plan, I fill out the application, which asks for a copy of Dad's medicare card. He says it's in his wallet. I unfold the dilapidated leather and find a picture of Mom from half a century ago, wearing bobby socks and a tight sweater; a picture of me as a baby, wearing nothing; ah, a card with "Horizon Medicare Blue" blazoned on the border." But weeks later, she receives a letter from HCSA sending word that the application has been rejected. A weeks-long, drawn out process ultimately results in the transfer. Phillips' chapter on dealing with her father's tax returns is a brief epic in itself.

"Frustrated by illness and exhaustion, Dad suddenly starts getting angry," she writes. "Anger has never been part of my experience of him." Marvin's moods are relatively stable on the whole. The interest here lies more in how Phillips perceives and reacts to the situation. Her ability to tap into her own Kuan Yin is the key. But I wouldn't want Phillips to be regarded as some "new age" philosopher. Everything in The Moon in the Water is rooted in reality. Shopping for Marvin's needs requires Phillips to constantly evaluate products and services. When Marvin begins to lose bowel control, Phillips writes, "Sometimes generous friends offer to pick up supplies for me. But it's better to go with them ... For example, get 'underwear,' not 'briefs.' Get sixteen-count, first choice, eighteen-count, second choice. No, don't get eighteen-count at all if it says 'super-absorbent.'  The sixteen-count is already thicker and more absorbent, for nighttime, whereas the eighteen-count is less absorbent for daytime."

I've really only touched the surface of this moving and engaging book. It's filled with the wisdom of caring. The Moon in the Water also encourages me to think: I, too, have the ability to care with sensitivity and skills for my parents.

[Published April 2008, 160 pages, $19.95]

Ron Slate

Reporting in the Boston Globe, Todd Wallack gives some much needed attention to a new model of collaboration between nonprofit foundations and biotech companies. Specifically, the foundations are investing in companies to support early drug research. In 2000, foundations invested $7 million in biotech. But by 2007, that figure had leaped to $75 million. Why is this happening? Why would the Cystic Fibrosis Foundation announce that it will invest as much as $49 million in Epix Pharmaceuticals?

The answer is simple. In order to take a drug to market, a company needs access to capital. But capital is hard to raise from investors (usually venture capitalists) if the market for the drug is “too small,” or if there is no preliminary proof that a drug could work. So foundations have jumped into the breach, dedicating dollars to jump-start research. The Cystic Fibrosis Foundation says that it has already supported the development of 30 potential drugs that otherwise would not have been pursued.

In starting Carespace, we’ve been fortunate to receive the investment support of individuals who “want their investments to have the same kind of social impact as their donations, an idea called mission-related investing,” as Michael Fitzgerald reported in The New York Times. Michael Porter’s consultancy, FSG Social Impact Advisors, estimates that mission-related investing has increased by 16.2 percent each year since 2002.

The Cystic Fibrosis Foundation illustrates the power of advocacy – where committed people take action, even bucking conventional wisdom about where to draw the lines between corporations and foundations. We see the same thing about to happen in the area of open dialog between people caring for loved ones.

Here are the dynamics involved:

First, directors of foundations are facing up to the fact that their own communities need a better way to communicate and share information. As we can see, their funding priority is research and advocacy, as it ought to be. To some degree, but not yet sufficiently, they are also waking to the value of dialog between their own constituencies and people caring for loved one in all the other disease- and disability-states.

Second, it’s clear that no single foundation or group of foundations is going to build and sustain a platform to empower 50,000,000+ people – to interact with each other as an influential social force, and to pool their knowledge in a precedent-setting fashion. But this is exactly what appeals to the investor who wants to blend progressive social goals with an opportunity to build a major market presence.

Technology has helped millions of people use the Internet to find information about caring for others. But caregivers have adapted to the technology, not the other way around. Just as the Cystic Fibrosis Foundation is championing its own cause by investing in innovative drug R&D, enlightened investors are working with our company to create something everyone says is a great idea.

The disability community is abuzz about the The Disabilities Savings Act of 2008 which was filed by Sen. Chris Dodd (D-Conn) on March 11. A similar bill has yet to be introduced to the House. The Act encourages individuals and families to save funds specifically for disability-related needs in tax-advantaged Disability Savings Accounts (DSA’s). It also includes a refundable tax credit for low-income savers. A DSA would operate like a college 529, helping those who care for loved ones without affecting their eligibility for other benefits. Promising to eliminate the complexities and costs of setting up disability needs trust and offering tax relief to financially strapped families and individuals, DSA’s could deliver significant value. We can all agree on that.

To start the advocacy engine, Bob and Suzanne Wright and the passionate community of Autism Speaks applied their deep commitment and substantial publicity prowess to helping to launch Dodd’s bill. When the Senator announced the bill at his press conference, he referenced the importance of the bill to the autism community. Then, Wright added his comments. It was a bright beginning.

But getting such legislation started is a different matter than getting it passed. The question is how to get the Act passed quickly and without getting lost in the political process. To do this, we’ve got to open the lens on the entire disability community and make Congress understand that a huge percentage of its voting constituency wants to see the Act passed without delay or undue compromise.

Congress needs to be made aware that this bill is not just about autism. It’s critical to the men and women who returned injured from serving in Iraq. It’s essential for the millions of children who have genetic disorders that never receive a formal diagnosis. It’s about all the forms of cancer.

When the legislative process slows, politicians have more opportunity to alter legislation to meet alternative agendas. We can’t let this happen. To get this Act passed, many people will need to be working the process every day. This involves bringing in as many strong voices as possible. That means the voice of disabled veterans from Iraq and Afghanistan, every part of the disability community, the financial community, and advocates for change in government and non-profit organizations.

For this act to pass quickly, good intentions from a few parties won’t be enough. Because this Act at first appears to reduce tax revenues, much work must be done to show that it most likely will be either revenue-neutral or a plus. Think of it this way. Financial institutions will pay more corporate taxes as these DSA’s grow. State and local government over time will shoulder less of the burden of supporting many disabled individuals. And so forth.

Let’s open the lens as wide as possible on the disability community. Advocates for autism alone will simply not provide enough star power and persuasiveness to move an institution like Congress – though we’re all appreciative of their leadership. By the time the Act rests on the President’s desk for signage, there should be no question that a massive part of our population wants the ink dried quickly.

Brian Costello / CEO, Carespace

Last December 2007, the United Nations declared April 2, 2008 to be World Autism Awareness Day in perpetuity. Since then, there has been a steadily growing stream of information about and coverage of Autism  in major media outlets. Of course, this kind of major attention can only help, and also helps bring attention to the many other issues many of us face as special needs parents.

Adding to the swirl of information about Autism has been the controversial decision last November 2007 by the National Vaccination Injury Compensation Program (VICP) that a vaccine containing Thimerosol may have caused the onset of Autism in a 9-year old girl.

A few weeks ago, we posted here an entry on sites about Autism that we like. There are many more sites about Autism and other diseases and disabilities that we did not have room to list, so please let us know about sites and blogs you trust.

In the meantime, here are a few sites about World Autism Awareness Day and some of the events surrounding it.

http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/
http://www.bio-medicine.org/medicine-news-1/Autism-Speaks-to-Celebrate-World-Autism-Awareness-Day-with-Day-Long-Series-of-International-Events-on-April-2-14013-1/
http://www.comedycentral.com/shows/night_of_too_many_stars/index.jhtml
http://autism.about.com/b/2008/03/16/cnn-wants-your-stories-and-questions-about-autism-for-a-full-day-of-coverage.htm

Thomas Falconer
carespace.com

Blogs and other online resources for special-needs parents range from one person telling their own story to vibrant online communities of parents sharing information and experiences to pure advocacy sites. One common thread is passion—special needs parents have plenty of it. And another is information—special needs parents rely on a steady flow of it. Here’s a quick overview of sites and blogs where you’ll find some of both. Please do help all of us by commenting on the sites we cover here, as well as on sites and blogs we may have missed.

•   The Special Parent -- Good general resource for parental caregivers of special needs children. Wide-range of information -- advocacy to strategies to specific day-to-day advice , even recipes— well-organized, well-written. Run by Kyron Arambula, a passionate special needs mom, who says the site is “a resource for information through my experiences, both good and bad.”
•   The Special Child -- Strong emphasis on encouraging parents and caregivers to share their stories, good and bad. Run by the Resource Foundation for Children with Challenges (RFCC). Seems to be undergoing a much-needed web makeover.
•   Parents Helping Parents --  Major, member-supported organization dedicated to helping families with special needs children of any age. Resources, events, support, services.  Special interest groups (under Support) have issue-specific information.
•   Federation for Children with Special Needs --  More focused on advocacy. Stated goal is “informing, educating, and empowering families.” Coalition of parent groups representing children with a variety of disabilities. Primary focus is connections to helpful organizations and resources.
•   Special Need Parent ; The Life and Times -- Lots of well-categorized content—particularly strong in autism—posted by mother of two special needs sons. Excellent  blogroll to other sites and resources.
•   About.com’s Parenting Special Needs -- Sub-section that covers essentials, a variety of other topics, and has lots of ads. More newsletter than community center, this site includes some well-organized information on caregiving, though it seems a bit impersonal and the blogs are perfunctory.
•   SNAP (Special Needs Advocate for Parents) – Refreshingly simple. Has a daunting 42-word mission. Boiled down -- SNAP is about advocacy for special needs kids and caregivers. Check out the extensive SNAP Community & Resources [Our Services] for great disease-related info, government info, and more.
•   Listen to Our Stories – Not caregiver focused but a powerful site that gathers first-person stories from young adults and children with disabilities. It doesn’t get more real world than this. Excellent Resource Links to topic areas and web sites that focus on specific disabilities.
•   AdoptionBlogs.com has a long list of active blogs on parenting adopted children with special needs.
•   Our-Kids—Support group for parents and caregivers of children with physical and/or mental disabilities. Postings of photos, advice, and other related information, including a good “special needs tips” section.
•   Our Special Kids – Community focused. Provides advice, books, articles, blogs, and other resources. The discussion forums provide personal insights and tips. Like many other special-needs forums and blogs, they’re moderated by a mother who understands the challenges of special-needs parenting.
•   Council for Disability Rights --  Dedicated to advancing rights and enhancing lives of people with disabilities. Extensive site that covers advocacy, issues, and some caregiving-related topics. The Useful Links section  provides links to online communities, national agencies, parent training information, more.
•   Tools for Parents of Children with Disabilities and Special Needs – from coping.org.  Includes information focused on learning disorders. Tools section has lots of details and reference information.

Stona Fitch
carespace.com

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  

Like millions of other parents of disabled or chronically ill children, my wife and I must face the fact that our daughter Meghan will need financial support for as long as we live -- and beyond.  When Meghan turns 18, she will be eligible for supplemental social security (SSI).  But SSI stipulates that assets in her name may not exceed $2,000, nor may she earn a certain amount on her own, or she becomes ineligible. So when my wife and I pass away, we can’t leave any assets directly to Meghan or they would cancel her SSI eligibility.

So how should parents deal with this situation?

It’s critical to hire a lawyer who will set up for you a Supplemental Needs Trust – also known as a special needs trust.  You’ll need a lawyer to help you navigate the tangled and difficult administrative and legal process. There are many great attorneys who specialize in trust work, and some even provide services free of charge to parents of special needs children.

Things are confusing and hectic enough in this world without having to navigate through the financial complexities in setting up trusts.  It’s disheartening to me that Congress has done virtually nothing to simplify this process.  Their last action occurred in 1993 when language was added to the Omnibus Budget Reconciliation Act (OBRA-93), allowing the use of supplemental needs trusts for individuals under age 65 and considered disabled by the Social Security Administration.

Last week, Senator Dodd (D-Connecticut) introduced a bill called the Disability Savings Act of 2008 with the folks from Autism Speaks at his side. According to Senator Dodd’s website, the purpose of the bill is “to encourage individuals with disabilities and their families to save private funds for disability-related expenses to supplement, not supplant, benefits provided by other sources (including Medicaid and private insurance) so that people with disabilities can maintain health, independence, and quality of life.” The specifics of the bill may be found on Senator Dodd’s website.

This is a sound and necessary bill. Everyone is affected by the rising cost of healthcare, but those caring for a loved one with disabilities or serious health issues get hit disproportionately.  I’ve heard that as much as 85% of the dollars associated with insurance claims come from just 20% of claims – those dealing with disabilities and serious health issues.

What is it going to take to get this bill passed?  Senator Dodd, a Democrat, said that he needs a supporter on the Republican side of the aisle, since it’s very difficult to pass legislation like this in an election year.  So how can we -- a community of 50-60 million caregivers and another 40 million plus people with disabilities -- mobilize and hold our legislators accountable to push this through? It’s going to take much more than the autism community, as active as they are.

I’m going to check with friends in Washington, D.C. to see if we can develop an effective strategy to make this happen.  There needs to be a joint movement by constituencies including Republican senators and some committed corporations.  I’m assuming Senator Dodd can rally support within the Democratic party.  The people who are going to be really important in this are those living in states with Republican senators. But our community needs to make all Republican and Democratic representatives in the Congress pay attention and take action, whether they're up for re-election or not.

I’ll be back here with some ideas about developing a groundswell and uniting the disability and caregiver community to make this happen. I’ll be back with a clear and concise viral strategy that I hope will drive our representatives on the hill to enact this important legislation.

Brian Costello
CEO, Carespace

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