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

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

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

A Site For Parents of An Autistic Child

Parents-cafe.com includes extensive resources for parents of autistic children, including a useful blog—Child With Autism. The site provides extensive information on autism—including medical updates, specific advice for living day-to-day with autism, and helpful connections to other sources of information. In short, it’s a useful aggregation of information on all aspects of autism—all geared toward parents.

Multiple contributors include parents of autistic children, experts in the field, and others. Blog posts cover a wide range of topics, such as tips on handling specific life challenges -- getting a haircut, dealing with public restrooms, and more, to educational issues Many are links to updated, autism-specific content on Parent-cafe.com. Others reach further afield.

The blog entries tend to be fairly detailed and specific, and are more educational than newsy. Recent entries – and the blogs are very active -- include an autistic sibling survey, an extensive autism resources directory, and a listing of national and local autism groups.

Missing is the back-and-forth, more conversational tone that would come from a blog that enabled open comments.  So the Child with Autism site 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 parents searching for help.

From former U.S. Secretary of Education Dr. Robert Paige: “I can assure you there is no more powerful advocate for children than a parent armed with information and options.” At Carespace, we take these words seriously, and are in the process of building a platform so that all caregivers -- not only parents of children with special needs-- can gather and connect with each other. We believe that all caregivers have insights and experiences that are common among us – emotional, financial, legal, medical and other issues affect all caregivers.

Stona Fitch
carespace.com

Medical Clinics in Convenience Stores

Would you really want to put your health in the hands of convenience stores selling cigarettes, candy, and magazines? This question hovers behind the recent controversy over whether Boston-area retail convenience stores should be allowed to offer limited healthcare clinics (e.g., CVS’s Minute Clinics) to handle sore throats, ear infections, and the like.

Boston Mayor Thomas Menino weighed in against the move, the Massachusetts Public Health Council seems to be for it, and much of the discussion is relentlessly focused on potential quality of care and safety issues. Let’s face it -- the market (and plenty of regulation – this is Massachusetts, after all) will quickly address quality of care. For caregivers, access to care is the more pertinent issue—and the real benefit for us.

Enabling low-priority issues to be handled at these convenient, walk-in clinics will free up the schedules of swamped General Practitioners (GP’s) to handle more complex, challenging, chronic medical conditions—the kind that caregivers struggle to get for their loved ones every day. As caregivers, we spend a fair amount of time in waiting rooms and hospital lobbies. Removing even a little of the considerable burden from GPs would help streamline access to specialized attention when it’s needed.

Plus, these clinics will give caregivers fast, as-needed access to routine diagnostic tests (throat cultures, etc.) when the problem is less serious. In short, getting your Alzheimer’s-afflicted mother’s blood pressure taken in 10 minutes at a convenience store beats waiting around the lobby of your doctor’s office for an hour or two.

With the right approvals, monitoring, and expectations, these new types of clinics seem to bring a simple and sensible addition to the healthcare mix. If convenience stores manage to make money offering these services, more power to them. If only our healthcare system was so responsive to the needs of the marketplace.

Should we rely on convenience-store clinics as frontline identifiers of more serious conditions, such as diabetes or cancer? Of course not. But can caregivers look to these walk-in clinics as a new, convenient resource? Absolutely.

Stona Fitch
carespace.com