csiblog

More on the "Caregiver" Conundrum

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

Why We Should Open the Lens on Disability Savings

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

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

Sites and Blogs for Special Needs Parents

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

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

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

 

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 

Book Review: An Uncertain Inheritance: Writers On Caring For Family

Caregivers generally summarize their situations into easy-to-handle overviews. The details are often too painful to go into. This inherent tendency toward reduction makes An Uncertain Inheritance: Writers on Caring for Family an insightful addition to the growing library of non-fiction (and fiction) focused on caregiving. These essays, edited by Nell Casey, come from professional writers, including medical writer Dr. Jerome Groopman, cartoonist/novelist Stan Mack, and novelists Julia Alvarez, Sam Lipsyte, and others.

These are writers who are willing and able to dig into the details and convey an accurate and extremely moving sense of what day-to-day caregiving involves. They’re able to capture the numbing difficulty of caregiving—from its tedious afternoons to revelatory moments.

This wide-ranging collection of very personal stories covers the full spectrum of caregiving, from families caring for young, critically ill children to adults caring for aging parents.

Several essays provide the additional perspective of being the one cared for—during mental illness, a debilitating tropical illness, and breast cancer.

Though beautifully written, wise, fascinating, and even funny at times—this isn’t easy reading. The recurrent theme of isolation winds its way through almost every essay like a dark thread. A daughter cares for her Alzheimer’s-afflicted mother, largely alone. A couple faces the death of their daughter in the ICU, alone. Another couple faces the profound challenges of autism with virtually zero support from the healthcare system.

The New York Times, in yesterday's Book Review section hinted at the problem, saying that “our society would rather not focus on this area of experience.” Going further, it’s easy to point to a national obsession with youth and vitality as a reason why caregiving isn’t as interesting as, say, celebrities overdosing or cycling in and out of rehab. But the problem goes deeper—our culture values building personal wealth and power over building communities. Communities are boring—until you need one.

I spoke with an Algerian friend recently, whose mother has Alzheimer’s (as does mine). His entire neighborhood in Algiers keeps an eye on his mother, spends time with her, and spreads the work of caregiving beyond the immediate family. It’s a shared responsibility of the community, not a personal burden.

Taken as a whole, these stories point out a strong need for broad, national support for caregivers, for more awareness, for more sharing of the rich and often instructive stories of caregiving. It’s not sad or heartbreaking work, as the Times review focused upon. Instead, caregiving is intense, messy, complicated, and ultimately,  spiritually uplifting.

Stona Fitch
Carespace.com