Schooling Senator McCaskill

By Mark E. Smith

It’s always striking to me when people try to politicize wheelchairs and scooters – mobility aids, that is. After all, disability doesn’t discriminate – republican, democrat, or other, when you need a mobility aid, you simply need it. A mobility aid stems from a medical necessity, not a political preference – and ideology doesn’t get a vote in the process when you’ve lost the ability to walk independently.

For this reasons, it stunned me when I saw Missouri’s junior Senator, Claire McCaskill, say to Fox News’ Chris Wallace last week that “hundreds of billions of dollars” can be saved by simply not “giving free scooters to Medicare beneficiaries who don’t really need them.”

Her statements went beyond a political gaffe, and into the realm of spiteful, where Senator McCaskill went on national television and did nothing more than make outlandish, prejudice claims, politicizing mobility aids and scapegoating those with disabilities out of pure ignorance.

This wasn’t the first time, however, that Senator McCaskill went on the attack of mobility aids – and those of us who use them. See, in a May 27, 2009, town hall meeting, she noted that mobility aids and citizens with diabetes are taxing our health care system:

…This is the example I love to give. I did it on Charlie Thompson’s radio show this morning. Many of you heard it. And that is, how many of you have seen the ads for scooters? The ads for scooters. You can get a free scooter. Now think about that. It’s not a free scooter. Guess who’s paying for it? We’re paying for it. Now why do we have a system that is marketing and foisting upon many people that may not want ‘em a scooter, ’cause it’s free? Well, it’s because we pay to get people scooters. Now, which is healthier? …Walking. So what are we doing? We’re paying for the scooters. …We’ve got to get back to rewarding good outcomes, we’ve got to get back to, and we can do this. We can lower these costs. Diabetes alone is an incredible drain on our tax dollars….

So, what Senator McCaskill directly suggests is that if you’re unable to walk due to disability like me, you’re a senior like my family member who barely gets by with a walker, or you have diabetes like my 12-year-old neighbor, you’re a lazy, “incredible drain” on the system.

As one with a disability, how do her words make you feel?

I’ll tell you in no uncertain terms how I feel about Senator McCaskill’s views: They make me feel like I’m hearing an elected official who’s so out of touch, and lacks such empathy for many of her own constituents – like adults with cerebral palsy, seniors with mobility impairments, and children with diabetes – that she’s not just from Capitol Hill, but void of reality.

All of this leads me to one critical question: What have those with severe disabilities, the elderly, and even children with diabetes done to cause Senator McCaskill to make us her scapegoat for the country’s fiscal crises and health care debate?

The answer is, those with disabilities have done absolutely nothing to be made Senator McCaskill’s target – and the statistics prove that point.

In 2007, Medicare spent approximately $1.2-billion on “power mobility aids,” out of total Medicare spending of $430-billion. Therefore, if Senator McCaskill had her wish and eliminated Medicare coverage of all power mobility aids, it would only save Medicare $1.2-billion out of its $430-billion expenses. Although, $1.2-billion is a lot of money, it’s actually only 0.28% of Medicare’s expenses – proving that Senator McCaskill’s claim that mobility products are taxing the system by “hundreds of billions of dollars” isn’t just exaggerated, it’s ludicrous.

Where the statistics become even more compelling is when one realizes that 67% of Medicare-funded power mobility aids go to the severely disabled, non-elderly – those with paralysis, muscular dystrophy, cerebral palsy, and multiple sclerosis, to name a few. Therefore, Senator McCaskill’s fiscal argument that eliminating scooter funding will save “hundreds of billions of dollars” becomes even more strikingly absurd, where scooters for the elderly are less than 1/3 of the $1.2-billion of power mobility funding. Scooters for the elderly, then, are “budget dust,” as Washington insiders call such small amounts, not a “hundreds of billions of dollars” end-all to health care funding as Senator McCaskill outrageously claims.

It’s also imperative to address Senator McCaskill’s statements that the elderly – and, anyone with a disability, really – get “free scooters” handed to them. Her statement demonstrates her absolute ignorance toward the diagnosis, prescription, and funding process. Scooters and power wheelchairs are FDA-regulated medical devices that must be prescribed, then authorized based on proven medical necessity, before Medicare will fund a mobility aid. Furthermore, in this era – where mobility funding has already been decreased by over 35% in the past five years, and the qualifications have become extremely stringent, including the in-home-use-only provision – it’s tougher than ever before for those with even the most clear-cut needs to obtain a mobility aid. In very simple terms, if you rely on a mobility aid, then you know that the process of getting one involves adjectives like frustrating, time-consuming, disheartening, unjust, and bureaucratic – and Senator McCaskill’s flip use of free isn’t in the equation, insulting those not only struggling to obtain a mobility aid, but also living with disability.

Now, since I’ve dispelled Senator McCaskill’s fiscal absurdities by simply presenting the facts, let me directly address her social concern that the elderly population is exploiting scooter use.

The social reality is, the elderly population isn’t racing out to get scooters as Senator McCaskill states. In fact, seniors who use scooters do so out of medical necessity – that is, they are limited in their ability to walk and require a mobility aid, accordingly. However, where the reality of scooter use among the elderly becomes especially poignant is that many elderly use scooters as a “last resort” due to declines in health, and some refuse to use a scooter even when unquestionably medically needed, as they see it as “giving in.” The elderly in America are a persevering, independent population, and they don’t turn to mobility aids until absolutely necessary.

In my own family, I have a 99-year-old relative who still lives in his own home, going shopping and such with assistance, and uses a walker. I’ve spent a great deal of time with him this summer, and it pains me to see him struggle with basic mobility, barely able to move about with his walker. Not only is he an ideal candidate for a scooter, but I actually got him one. Yet, he refuses to use the scooter, feeling as though it would be “giving up” – an understandable emotion for a man of lifelong physical strength and independence. As positive slants as I’ve put on scooter use in speaking with him – that it will make him more mobile and safer in everyday life – he refuses to use any device beyond his own legs, no matter how weak and limiting they are.

As my own relative demonstrates, contrary to Senator McCaskill’s ignorance, not only isn’t the elderly population exploiting scooter usage, many of age aren’t using mobility aids when they truly need them, so it’s entirely debatable that the elderly population is, in fact, under-served by mobility aids. Further, it can be argued that the under-served elderly population is actually a fiscal liability by not having mobility aids, a risk toward Medicare hospitalization costs. Again, I look at my elderly relative teetering while using a walker, and wonder what one fall – one trip to the emergency room, not to mention a hospital stay or surgery – would cost Medicare? We know that such a hospital visit would cost far more than a preventative $1,200 scooter. In these ways, not only aren’t scooters over-utilized by the elderly, but Senator McCaskill’s wish to restrict their funding even more could most likely increase Medicare costs by not preventing falls and injuries by those who need mobility aids to sustain health and safety.

Lastly, I’d be amiss if I didn’t address Senator McCaskill’s belief that television commercials that advertise scooters and power wheelchairs promote fraudulent use, that such ads encourage those not in need to get a mobility aid through Medicare. Again, people without medical conditions don’t pursue mobility aids. After all, there’s not one argument why a sane, healthy person would see a scooter commercial and decide to pursue a diagnosis and prescription, and try to go through the approval process to get a mobility aid that they don’t need. People without disabilities don’t want to be disabled. By literal comparison, McCaskill’s concern would also suggest that Lipitor commercials encourage those in perfect health to try to convince their doctors to prescribe them the cholesterol-lowering medication even though they don’t need it. The rational fact is that people respond to mobility and medication commercials for the same reason: Existing medical need. If you’re totally healthy, a commercial for a mobility aid or condition-specific medication won’t convince you otherwise. On the other hand, if you have a condition, and you respond to a commercial that advertises a solution, that simply makes you a consumer, not a “fraud” as McCaskill labels beneficiaries who rely on mobility aids.

When one looks at the simple facts – that power mobility aids cost Medicare $1.2-billion annually, not “hundreds of billions” as Senator McCaskill claims; that mobility aids are merely a tiny fraction of Medicare’s annual $430-billion expenditures, not Medicare’s foremost cost as Senator McCaskill suggests; and that the elderly population is reserved toward using mobility aids, not seeking them fraudulently as Senator McCaskill asserts – one truth is evident: Senator McCaskill, of the great state of Missouri, is out of touch, misinformed, and a voice of degradation toward those with disabilities.

Let us hope that the great constituency of Missouri uses its collective voice to reel their junior Senator, Claire McCaskill, back down to Earth, where those with disabilities are respected, not scapegoated for one misguided politician’s hoped personal gain.

Road to Danger

By Mark E. Smith

I’ve been reading posts on the WheelchairJunkie message board by users asserting their rights to use their wheelchairs along the shoulders of roadways, as “pedestrians” – and it reads to me as a troubling argument, where based on pedestrian accident statistics and remaining social barriers of inaccessible sidewalks and transit systems, we should advocate getting wheelchair users off of roads, not on them.

Technically, throughout the U.S., a wheelchair user is a pedestrian, able to travel where pedestrians travel. For some, this includes traveling down the shoulders of roadways when sidewalks aren’t available. Of course, as experienced by some posters on the message board, ignorance remains toward disability and wheelchair use, where some with disabilities have expressed being stopped by the police for using their wheelchairs “in the street,” provoking the wish of some to seek legal protection so that they can continue using their wheelchairs along roadways when needed.

What’s occurred to me in reading the discussions is that while many wheelchair users are quick to tout their rights as pedestrians on roadways, none mention personal safety and responsibility, where just because one can or needs to use a wheelchair along roadways doesn’t mean that the activity is prudent.

The fact is, automobiles occupy the road, and the minute that a pedestrian ventures into the proximity of vehicular traffic, extreme awareness and caution must be taken. While a pedestrian may have every right of way, it still doesn’t discount the fact that pedestrians who use wheelchairs are regularly struck and killed by automobiles in this country, frequently reported in news stories.

According to the National Center for Statistics and Analysis, whenever pedestrians interact with roadways, there’s potential danger, to the toll of 1 pedestrian death every 108 minutes in the U.S. Additionally, the facts show that placing oneself outside of normal pedestrian patterns – such as outside of crosswalks – skyrockets the risk of an accident, with 75% of pedestrian-vehicle accidents occurring at non-intersections.

Interestingly, I’ve read wheelchair users stating that they travel on the shoulders of roadways even when there are accessible sidewalks because it’s safer, that the bumps and slopes of sidewalks can be dangerous. Statistically, nothing is farther from the truth. In 2001, while 4,461 pedestrians were killed on roadways, none were killed on sidewalks by roadway vehicles according to statistics. Sure, some who use wheelchairs say that a rough sidewalk could cause a wheelchair to tip, resulting in injury; however, such odds are so small that they’re a non-statistic, especially for a wheelchair-sidewalk related death. Put simply, pedestrians using wheelchairs on roadways are unquestionably at risk, but not so on sidewalks – that is, the safest place for a pedestrian, wheelchair or not, is on a sidewalk.  (And, it’s illegal in most states for a pedestrian to travel along a roadway when a sidewalk is available.)

Similarly to using sidewalks, pedestrians dramatically increase safety by simply obeying intersection laws, crossing in crosswalks, namely when the light gives the pedestrian the right of way (again, 75% of all pedestrian fatalities occur at non-intersections, so crossing at controlled intersections dramatically increases safety). And, traveling during daylight hours also reduces the risk of pedestrian accidents, where 66% of pedestrian fatalities occur at night, between 6 pm and 6 am.

Still, some pedestrians who use wheelchairs have no choice but to travel down the shoulder of a road or cross at non-intersections, as there are no sidewalks or crossings, a disconcerting reality. Advocates blame this dangerous fact on poor infrastructure, with not enough governmental attention to sidewalks or accessible transportation. Yet, with 4 million miles of paved roads in the U.S., we will never have coast-to-coast sidewalks or transportation, where pedestrians will always have to interact with roadways at some point. In this way, it’s vital that, no matter the right of way, pedestrians who use wheelchairs lookout for themselves to the best of their abilities when interacting with roadways.

When one finds oneself in a situation where there’s no sidewalk, one should be smart about it, taking all necessary precautions to travel as safely as possible. One should stay as far as possible outside of the flow of traffic; one should wear blaze-colored safety clothing to dramatically call drivers’ attention; one should fly an orange flag to increase the wheelchair’s visibility; and, one should avoid inherently dangerous roads and situations altogether. Yes, a pedestrian may have the right of way; however, one should still take whatever steps possible to ensure one’s own safety above all else.

I write on this topic from great personal experience, having spent 31 years as a pedestrian using a wheelchair, including using my wheelchair to get back and forth to work till this very day – and I know the pitfalls and hazards, from no sidewalks to drivers running red lights. However, I’ve dedicated myself to not becoming a statistic, where I strive to take every precaution possible to stay safe. If there’s a sidewalk, I’m on it; and, if there’s a crosswalk, I use it. I wear a blaze-orange safety coat, and I fly a safety flag. And, I never assume for a second that being on the road is in my favor, even when I have the right of way. I know that the law does not ultimately prevent pedestrian accidents, it merely assigns liability, and I have no interest in being on the winning side of the law after being hit by a car; rather, my goal is to not get struck in th first place.

From these perspectives, fighting to allow pedestrians who use wheelchairs increased access to roadways truly defeats safety and accessibility. I agree that it’s unrealistic to assume that no one with a disability ever has to travel down the shoulder of a road out of necessity – the reality is that some have to, where there are no sidewalks, and they shouldn’t be hassled by the police if traveling with prudence. However, one’s recognizing necessity is a lot different than literally advocating wheelchair use on roadways for the sake of “personal liberty,” as suggested by some. As a result, what we really need to do is fight to keep wheelchair users off of roadways by advocating increased access to sidewalks and transportation, encouraging our peers to stay safe through logical channels, to not become the latest tragic news story.

Indeed, when there’s no sidewalk or accessible transportation on our local routes, let us not pursue the right to use our wheelchairs on dangerous roadways; but, instead, let us assert ourselves with City Hall that there needs to be more sidewalks and transit services to keep us safe and independent in our local communities. That is, as pedestrians who use wheelchairs, let us fight for safety through accessible sidewalks and transportation, not seek the skewed right to become roadway fatality statistics in the name of personal liberty.

Disability Rights or Child Welfare?

 

By Mark E. Smith

 

They say that there’s always two sides to every story, but aren’t the facts still the facts? This is one of those cases – surrounding a parent with a disability, no less.

 

“A disabled mother fights again for right to raise her child,” is the headline of a circulating news story this week, And, if you’re a parent with a disability like I am, that headline is sure to capture your attention, conjuring natural thoughts of, “You mean someone, presumably a court, isn’t allowing a mother to raise her child because the mother has a disability?”

 

Then, the opening of the article confirms such a thought:

 

The first time Sabreena Westphal went to court to try to keep her children, she became a celebrity. Suffering from cerebral palsy and unable to walk or fully use her arms, she was still determined to care for her two young sons. Disabled parents and advocates rallied behind the young woman with the pixie haircut and impish smile who, at the time nearly 20 years ago, went by the name Tiffany Callo. She was the subject of a book, “A Mother’s Touch: The Tiffany Callo Story.” She rode in a limousine to an appearance on “Donahue.”

But the book didn’t come with a happy ending. Her little boys were adopted and taken far from her San Jose home.

Five years ago, she became pregnant again. And now she’s back in court.This time, Westphal, 40, is trying to prevent her 5-year-old daughter from being adopted by a couple in San Joaquin County. This time, she has the Americans with Disabilities Act of 1990 on her side and a political landscape that has changed substantially for disabled Americans.

As if those details aren’t alarming enough, it turns out the Westphal and the father of the 5-year-old have had an additional streak of bad luck, with Westphal having been hit by a car in her power wheelchair, and her child’s father being hospitalized for lupus.Surely, Westphal sounds like a mother with the world against her.

However, as one learns more of the story, another side comes out, one generated more by facts from social workers, courts, and family members than by a heavily-spun disability rights story: Westphal’s disability clearly isn’t the reason why her kids have been taken away. In fact, as reported, Westphal has a 20-year history dating back to drug use, relationship volatilities, a lack of developing a healthy support system, accusations of child abuse, passing her children off to neighbors and family members, and habitually failing to comply with the standards that social workers put in place to care for her children.

Line up Westphal, the disability-rights activists, and the media spinning the story, and it becomes obvious that they’re all overlooking the most important part of the issue: The 5-year-old child’s welfare.In fact, this story isn’t about disability or the ADA at all; rather, this is a story about a child whose needs were reportedly neglected by her parents, including a mother who failed to provide adequate support for all three of her children at different times.

I appreciate that Westphal wants her child back, using disability rights as a soapbox; however, is that really what’s best for the child?

Based on what I’ve read, of course not. The 5-year-old needs a stable, safe, functional, caring home, and, disability or not, Westphal has reportedly failed to meet those obligations, arguably through making poor decisions over and over again.

Beyond my own fatherhood, I’ve known many couples with disabilities raising children, where social workers have never entered the picture. And, there’s no secret to the success of these parents – they simply provide stable, safe, nurturing, responsible homes, where the child’s needs come before their own. These are principals that all appropriate parents follow, regardless of disability.

There’s no doubt that the Westphal story is ultimately sad all the way around, where everyone in the story seems on the razor’s edge of life. However, the real tragedy is the experience of the child. Westphal, by all accounts, has been given chance after chance to turn her life around, and has failed to do so. Yet, the child never had a chance, born into a reported unfit home, shuffled to neighbors and family, neglected by her parents, never to know the parental bonding, trust, and stability that every child requires.

And, that’s where I, as a parent, believe that this case comes into a clear, concise perspective: It’s not about disability rights in the least. Instead, it’s a case exclusively about responsible parties – family, social workers, and the courts – determining what’s best for a child.