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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

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 

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

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