csiblog

World Autism Awareness Day

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

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  

A Time To Speak Up For Disabilities Legislation

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

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

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

Electronic Medical Records: Google and Cleveland Clinic Pair Up

I remember when my wife Kim and I were first searching for a diagnosis for our daughter.  We went from doctor to doctor – Geneticists, Neurologists, Pediatricians, GI’s, etc.  Living in the Boston area we had broad access to a number of doctors who specialized in specific areas – which at first glance seemed great.   And, at some level it is.  However, the fragmentation of the healthcare system in Boston also created a big issue around sharing information between specialists, and accessing medical records.  I can’t even tell you how many times we had doctors cutting and pasting information out of their hospital systems into emails so we could share prior tests with professionals at other hospitals.  You would think that doctors have better things to do with their time.

We oscillated across three separate hospitals in search of a diagnosis -- Mass General, Boston Childrens, and Tufts New England Medical Center.  We found ourselves answering the same questions over and over again.  Finally, Kim put the family tree/ genetic map into a PowerPoint slide and started pulling it out-- the medical professionals looked at her like she was the next coming of Bill Gates.  It saved us about 10 - 15 minutes at the start of every meeting.

Today, we still use doctors at all three hospitals for our daughter.  The medical records are still spread across all of them.  We still spend time transferring information from one hospital to the other.   In fact, I find a bit of irony that with all the money spent on electronic medical records (EMRs) -- which figures into our healthcare costs -- the most comprehensive medical record we have on our daughter happens to be a three ring binder that sits in our home.  Every doctors’ letter is in it, every blood test, and much more – including Kim’s original PowerPoint slide.

For caregivers and patients, not having quick access to their records can be disastrous. For doctors and medical staff, it can be frustrating, time-consuming, and lead to major mistakes in care options.

So the focus these days is on management of electronic medical records, who owns them, where they reside, how to make them portable, how to protect privacy along the way. Both Google and Microsoft have pilot programs to house personal medical records in large databases so that any doctor anywhere can access information about any patient. Of course, there is controversy.

But for us, the larger issue is that there is movement away from the concept that individual hospitals own your information, and toward a more open architecture that favors the patient and not the hospital.

While the important debate about privacy and security goes on, Kim and I are thrilled to see that one hospital, the prestigious Cleveland Clinic, is engaging in a pilot program with Google to store medical records in a central database built by Google. We applaud the Cleveland Clinic’s efforts toward portability and accessibility, and look forward to the results of the pilot.

Brian Costello
carespace.com

For more on this:
techdirt.com
cnn.com
wsj health blog

An Interview With Nell Casey

A few days ago we reviewed here An Uncertain Inheritance: Writers on Caring for Family, a collection of essays edited by Nell Casey. The same day a dear friend who is taking care of her mom called me to say that I should download WNYC radio’s Leonard Lopate show on caregiving. On his show, from December 12th, Lennie – as we affectionately call him here in New York -- talked with author Nell Casey along with Andrew Solomon and Susan Lehman, contributors to the book.

The show is called “The Rewards and Challenges of Being a Caregiver,” and is a moving and fascinating discussion of caregiving, from the impact of those returning from Iraq in need of long-term care, to opting out of the nursing home system for an aging parent, to the deep financial chaos caregiving can cause.  There is also talk about the rewards of taking care of someone you love through a serious illness, or as they approach death.

So the discussion of caregiving as a concept and caregivers as a major demographic gains momentum every day. One of the more auspicious comments author Nell Casey makes is that, at some point, we will all become caregivers. Let me know what you think of the broadcast.

Thomas Falconer
Carespace.com 

Caregiving Military Moms Buck the System

I just finished reading a story in the New York Times about  three young military men, two of whom sustained major injuries in Iraq, one who injured himself in a motorcycle accident. Their lives are now filled with pain, suffering, and a constant need for comprehensive rehabilitative services. So the military mom's fought the Veteran's Administration to get their sons' into private care.

But along with this tragic and heartbreaking story is one of caring, courage, friendship, and hope. The injured men’s moms have become good friends, partners in care.

One is from the state of Washington, the other is from Arizona, and the third is from Virginia. And aside from bringing to light the disgraceful treatment their sons’ were receiving from the Veterans Administration, the story also sheds light on how strong we caregivers become when we work together, share experiences, and really connect with each other around our lives as caregivers.

Thomas Falconer
carespace.com

More on the Candidates' Healthcare Reform Plans

Even though Super Tuesday has come and gone, the debates and the competition for our attention and for our votes in the general election continue. One of the many benefits of the internet is that the candidates have an unprecedented opportunity to give us every detail of their plans.

Several sites have taken the time to compare the candidates’ health reform plans, and the American Association of People With Disabilities (AAPD) has done a very good job.

Hillary Clinton and Barack Obama are the only candidates who responded to the questionnaire from the AAPD, and Senator Clinton is the only candidate who participated in the November 2nd Candidates Forum on Disabilities. No Republican candidates responded to the AAPD candidate questionnaire, and none attended the Forum.

Thomas Falconer
carespace.com