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

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

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

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

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

Comparing the Candidates Health Care Platforms

It’s interesting to see how much emphasis healthcare reform is getting today, Super Tuesday. Barack Obama and Hillary Clinton, in particular, are each claiming to be the only candidate advocating universal health insurance. John McCain is saying that bringing costs under control is the only way to stop the erosion of affordable health insurance. Mitt Romney is pointing to the health insurance reforms he put in place in Massachusetts.

Every candidate has a platform on healthcare reform. It ought to be noted, though, that Obama is the only candidate with a separate policy platform for Americans with disabilities. It’s worth taking a look at, regardless of your political affiliation, just to see how his policy people sort out what ought to be done.

It’s one thing to change policy. Bill Clinton’s administration was the first to place real emphasis on helping America’s caregivers. This led to the Family Caregiver Relief Act of 2003. But it’s another thing to change practice. It’s still a brutal fact, for instance, that hospitals have no programmatic approach to integrating caregivers into their procedures. An act of Congress, usually resulting in allocating funds for programs, doesn’t necessarily create change where it’s needed. What’s interesting about Obama’s view on disabilities is that he begins with noting this sad fact.

He notes that the Americans With Disabilities Act (ADA) was enacted 17 years ago – yet in 2006, “working-age Americans with disabilities were almost three times more likely to live below the poverty line.” His platform has four parts. He says we should provide educational opportunities for those with disabilities, end discrimination, increase the employment rate of those with disabilities, and support independent living for those people. His plan largely relies on throwing money at the problems -- $10 billion more for early intervention education for children up to five years of age – and a  $4,000 refundable credit per student for college tuition.  But the more profound changes might come from other of his planks – such as pushing forward Tom Harkin’s ADA Restoration Act “which would overturn the Supreme Court decisions that limit ADA’s coverage and effectiveness.” Or funding the enforcement of anti-discrimination laws. Or giving employers tax benefits for hiring disabled workers.

Healthcare is going to be a very hot issue the closer we get to November – if only because politicians won’t be able to scoot away from the details this time. Obama’s stance on disabilities suggests that the candidates are trying to get ahead of the issues and propose specific solutions. We’ll be highlighting the action as it pertains to caregiving.

Ron Slate
carespace.com

Special Needs Parents Post Petition

The Special Needs Parent blog pointed me to an online petition that proposes to lobby the U.S. Congress, U.S. Senate, State Congressmen, State Senators, and Governors for tax breaks associated with caring for a special needs child.

I don’t have to tell you that our entire health care system is under intense scrutiny and a source of great debate as we head toward a presidential election. Our opportunity as parents of special needs children to inject our voices into that debate is clear.

So take a look at the petition, sign it, and pass it on if that suits you. I couldn’t sign it fast enough. I’m signature number 10,123.

Brian Costello
Carespace.com