csiblog

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

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

 

Alzheimer’s and Dementia Blogs: Ten We Found Useful

My sister and I recently found ourselves taking a crash course in Alzheimer’s as our 75-year-old mother’s forgetfulness escalated to a more clinical level. The wake-up call came from the California Highway Patrol, which found our mother parked by the side of the highway in Santa Rosa, 200 miles north of her home. She had no idea where she was.

Like millions of others, we were suddenly thrown into a complicated caregiving challenge, and needed  lots of information, fast. Fortunately, online resources about Alzheimer’s and dementia are extensive, including some excellent blogs. Here are ten worth checking out:

•    Alzheimer’s Notes provides great educational information and caregiving advice, all well-categorized.

•    The Alzheimer’s Association has wide-ranging message boards, including a popular Caregivers Forum that covers the full range—from personal stories to advice. As someone said recently on the forum, you have to have a sense of humor to care for someone with dementia.

•    The Tangled Neuron gathers wide-ranging research reports and articles on memory issues and decodes them for caregivers and other non-medical readers. Excellent links to other sites.

•    The Dementia Caregiver’s Toolbox is the real deal—plenty of great, real-world advice, and focused almost exclusively on professional and family caregiving. For example, a recent post provided tips on dealing  with “dementia elopement” (great phrase) or wandering.

•    The Caregiver’s Beacon is a very popular blog that provides a lot of great resources for Alzheimer’s and dementia caregivers—plus extensive links to other blogs. A bit cluttered, but a good place to start your search for information.

•    Dementia Blues is a sporadic but very well-written, highly personal blog from writer Paula Martinac. Its subtitle—“Funny/Sad Ruminations by a Baby Boomer On Having Two Parents with Dementia” pretty much says it all.

•    HealthTalk’s Caregiver Notes offers a personal take on caregiving, with good information, and intra-site content from within HealthTalk.

•    Minding Our Elders says that its mission is “to shine a light on the isolation often felt by caregivers and seniors and to give them a voice.” Clear posts from well-informed author Carol Bradley Bursack and lots of links to other resources (including various associations and publications) make this a great blog for caregivers.

•    Spiritual Caregiving adds a spiritual perspective to the challenges of family caregiving for loved ones with incurable memory loss and dementia. 

•    At OurAlzheimers.com—part of Health Central—you’ll find shared posts from caregivers and people living with Alzheimer’s and vascular dementia.

As always, one blog tends to lead to another, then another. After some exploring, you’ll have a wide-ranging collection of resources—some informational, others more personal. Caregiving for a dementia-afflicted parent, spouse, or other relative is difficult and sometimes downright bizarre. Reading about the experiences of others puts it in perspective and provides helpful advice.

Stona Fitch
carespace.com

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

Autism Blogs: Lots of Them, Plenty of Info for Caregivers

Autism Blogs: Lots of them, plenty of info for caregivers

I just spent most of a day navigating through the maze of blogs that cover various autism topics. Without too much digging, I found dozens of informed, passionate voices, lots of useful information for caregivers, and an extremely engaged blogging community focused on all aspects of autism, Asperger Syndrome, and related issues.

It’s important to note that there are legendary and acrimonious fights within the autism community, generally around the origins, causes, and diagnosis of autism. Some bloggers are partisan and political, others stay neutral and focus on caregiving and more practical concerns. Luckily, there are hundreds of voices out there to provide balance and insights.

Among them are dozens of very good blogs that address the significant caregiving challenges of autism. Most are geared toward parents taking care of children with some version of autism. And most go beyond core medical information to provide practical, day-to-day caregiving advice.

For example, Parent-Café.com includes extensive resources for parents of autistic children, including a useful blog—Child With Autism. Here you’ll find extensive information on autism—including medical updates, specific advice for living day-to-day with autism, and helpful connections to other information. It’s a useful aggregation of information on all aspects of autism—all geared toward parents. Child with Autism is more of a trip to the library than a morning at the coffee shop. But it manages to convey a huge amount of autism information efficiently to caregivers who need it.

While not exclusively for parents or caregivers of autistic children, About.com’s Autism group—led by Lisa Jo Rudy, mother of an autistic son, Tommy—includes a robust autism blog that covers wide-ranging issues, from insights on early intervention to caregiving tips.

While we’re on the mom side of the blogosphere, Joys of Autism provides personal experiences of Estee Klar-Wolfond, an autistic mother in Toronto (with an autistic son, Adam), and founder of The Autism Acceptance Project. Her blog balances the day-to-day issues and insights with larger advocacy issues and other information.

At Autismville (part of Parents.com), one of the most cited autism blogs around, you’ll hear the articulate, funny, and extremely informed voice of Judith Ursitti. This wide-ranging blog, subtitle—Life on the Autism Spectrum—gathers autism-related news and information, provides a lot of great resources and references, and includes a lot of comments. Users must be members of Parents.com to contribute.

Autism Vox provides a web soapbox for autism mom Kristina Chew, who provides an engaged, more advocacy-focused blog that draws in lot of people who weigh in with comments. And Autism Diva isn’t afraid of taking on hard topics, from the aforementioned controversy on the possible causes of autism to rebutting autism mom/celebrity Jenny McCarthy’s characterization of autism in her recent book.

Stona Fitch
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