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 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

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

Challenging Denied Medical Claims

We all love to hate insurance companies. That's one of the reasons the Michael Moore film Sicko resonated -- those of us, especially caregivers, who are constantly in one sort of  battle or another with insurance company bureaucracies felt the pain.

Denials of benefits, like taxes and death, are so common these days that they are generally considered a routine component of the health insurance claims process. It’s expected that insurance providers will reject many claims—more often than not for no good reason. And to my view that borders on the scandalous.  In any case, denied claims are inevitable, especially for those with serious health issues, and their caregivers, who file the most claims.

For the caregiver, denied claims are a major aggravation and distraction. Just the amount of time spent on the phone can be completely infuriating, and exhausting.

As frustrating as it is, though, fighting your insurance provider can be worth the effort.  A surprising number of appeals succeed, though they take tenacity, time, and a zen-like sense of patience. As caregivers, we have plenty of courage, but very little time.

Denied claims are often due to simple administrative errors that can take hours to identify. Others denials are more complex. But you never know unless you take the first step—calling the customer-service number of your health plan or insurer.  And don't hold your breath when you get put on hold. Before you make the call, put Yo-Yo-Ma on softly in the background.

My strong advice -- before launching into the battle, take a look at these excellent, time-saving resources:

• The Consumers Union (publisher of Consumer Reports) provides a detailed step-by-step guide through each stage of a denied-claim challenge.
• CNNmoney .com  has ten tips to help challenge a denial of benefits.
• Bankrate.com provides some detail on the process of challenging an insurance company.

Thomas Falconer
carespace.com

Should Doctors Be Paid to Prescribe Generic Drugs?

Regarding yesterday’s article in the Wall Street Journal entitled "Doctor's Paid to Prescribe Generic Pills" by Vanessa Fuhrman:

We have a very real crisis in America and it is our healthcare system.  It is downright scary the direction it is headed.  And no one has more experience with the broken system than patients with serious illnesses and their caregivers.

The journal article is about health insurance companies paying doctors financial incentives to move their patients over to generic drugs. Many of us caregivers deal with managing multiple medications. It doesn’t matter if a prescription is directly aimed at an area of illness or it is to manage some of the symptoms that present themselves – they are an important part of life in this world.

My daughter Meg has a number of prescriptions she requires on a regular basis – CoQ10, Synthroid, Carnetene, Neocate Junior, Bactrim, and Zyrtec.  At least one of these has a generic version coming available at the end of this month.  For us, the decision to move to a generic version of one of Meg’s meds will be front and center in early February. My wife Kim and I will look at moving to generics because they will most likely incur a lower insurance co-payment.

Insurance companies push people over to the generic version of a drug by significantly increasing your co-pay on the non-generic version.This is usually how people find out - their co-payment goes up on the generic and they ask the pharmacist why. Do not depend on your doctor to tell you that a generic version of a drug is available – our own did not tell us.

So we’ll talk to our doctor and our pharmacist, do a little research on the web about the new generic, and then collectively make a decision if we should move Meg over to it. Kim and I make sure we are part of all the decisions related to Meghan's care and work with all the professionals involved in her care.

But what upsets me about the Wall Street Journal article is that, more and more, insurance companies are attempting to get doctors to move to generics through financial incentives. We know Meg’s doctors fairly well and we're quite sure that none of them would change our daughter's meds based solely on a financial incentive from an insurance company. A doctor’s responsibility is to provide the best care available to their patients, not to help insurance companies and the generic pharmaceutical industry make profits. And our experience with doctors bears that out.

So how do we know when we’re being steered to a generic drug because of a kickback? How do we get the assistance we need throughout the decision-making process of moving to generics?

I would love to hear people’s thoughts on this one as it hits very close to home for all caregivers and their loved ones.

Brian Costello
carespace.com

More to read:

http://epablog.wordpress.com/2007/11/26/kickbacks-doctors-pharma-insurance-and-surprise-patients-caught-in-the-middle/

http://www.thebostonchannel.com/news/13800173/detail.html

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