Ep 18: Accessibility and the ADA

https://goo.gl/SYq8qt

Today’s episode is about accessibility and the Americans with Disabilities Act with Lia Seth and Dara Baldwin. Lia shares her experiences navigating public spaces as person with an invisible disability and a recent experience at a music venue that shows what accessibility should be all about. Dara, a disability rights policy analyst, gives an overview of HR 620, the ADA Education & Reform Act of 2017, and what’s at stake for the disability community.

Please note: The status of the bill has changed since the recording of Dara’s interview. H.R.620 will go to a House floor vote on Thursday, February 15, 2018. See the links below on how you can protest and contact your elected representatives. The time is now, ya’ll!

Transcript

Americans Will Struggle to Grow Old at Home

https://goo.gl/XV3Eib

Some 80 million people will be seniors by 2050. Our national home-care infrastructure isn’t close to ready.

Eighty million people in the U.S. will be 65 or older within a few decades, compared with around 50 million today, and, according to surveys conducted by AARP Inc., the desire to grow old at home is almost universal. Most who do so will need help with daily tasks and will exhaust the ability of family and friends to cook and clean, bathe and dress, and run errands. When Americans look for paid help, they’ll find their national infrastructure convoluted and wanting. It’s a problem the world over, but one compounded in the U.S. by the fragility of the welfare state.

A typical home-based care plan of six or eight hours a day is less costly, and more salutary, than a nursing-home stay, but it’s still expensive enough to bankrupt a middle-class American family. Medicare, the public benefit plan for those 65 and older, pays only for strictly medical forms of home care, such as dressing wounds and physical therapy, or for short post-hospital stints in nursing homes. Private long-term care insurance can be prohibitively expensive (annual premiums run into the thousands) and unavailable to those with preexisting conditions. Most seniors who need help with daily tasks first exhaust their savings, then apply for Medicaid, the public health insurance program for the poor.

Medicaid is jointly funded by the state and federal governments, but most rules are set in Washington. Certain services must be provided; states can then decide what else to cover and how much to spend. Nursing-home care is a mandated benefit, but nonmedical home care isn’t. The result is a chaotic national patchwork. A senior in Virginia is entitled to no more than 32 home visits per year; in Utah the cap is 60 hours per month.

In states with strict limits, many patients who would prefer to stay at home are placed instead in a nursing facility, at significant cost to the public—in 2015, about $55 billion. In states that do approve substantial home-based care, Medicaid budgets are underfunded to the point of crisis. As a result the nation’s 2.9 million home-care workers—who, according to the Bureau of Labor Statistics, earn a median annual income of $22,200—are routinely pressed to donate their labor, pushing through required breaks, staying well beyond the hours set by their agency, or, like Valia, enduring long, uncompensated nights.

New York, one of the nation’s largest long-term-care markets and the only state whose Medicaid program covers around-the-clock help, comes closest to the future Americans say they want. But New York also demonstrates the system’s central problem: It’s untenable, given current funding levels, to pay workers for anywhere close to the number of hours they actually work.

“Tell me another job where you have to work for free throughout the night,” Valia said. “It doesn’t exist!”


Failing health of the United States

https://goo.gl/qFtrbq

The role of challenging life conditions and the policies behind them

Life expectancy in the US has fallen for the second year in a row.1 This is alarming because life expectancy has risen for much of the past century in developed countries, including the US. The decline in US health relative to other countries, however, is not new; it has been unfolding for decades (fig 1). In 1960, Americans had the highest life expectancy, 2.4 years higher than the average for countries in the Organisation for Economic Cooperation and Development (OECD). But the US started losing ground in the 1980s. US life expectancy fell below the OECD average in 1998, plateaued in 2012, and is now 1.5 years lower than the OECD average.2

A joint panel of the National Research Council and Institute of Medicine investigated the US health disadvantage in 2013.3 It found that Americans had poorer health in many domains, including birth outcomes, injuries, homicides, adolescent pregnancy, HIV/AIDS, obesity, diabetes, and heart disease. It also found that many factors contribute to the health disadvantage; for example, Americans are more likely to engage in unhealthy behaviors (such as heavy caloric intake, drug abuse, and firearm ownership), live in cities designed for cars rather than pedestrians or cyclists, have weaker social welfare supports, and lack universal health insurance.

The panel reported high death rates in the US from drugs, a problem that has grown over time. Between 2000 and 2014, the rate of fatal drug overdoses rose by 137%, a crisis fueled by the growing use of highly addictive opioid drugs.4 In 2015 alone, more than 64 000 Americans died from drug overdoses,5 exceeding the number of US casualties in the Vietnam war. Drug addiction is devastating families and the social fabric of communities. The country is belatedly scrambling to reduce access (with, for example, prescription drug monitoring and drug take back programs), improve emergency responses to reverse overdoses (such as naloxone programs), and enhance access to effective addiction treatment (such as medication assisted treatment).

But the opioid epidemic is the tip of an iceberg, part of an even larger public health crisis in the US: death rates from alcohol abuse and suicides have also been rising. Between 1999 and 2014, the suicide rate rose by 24%.6 These “deaths of despair,” as some have called them, are disproportionately affecting white Americans, especially adults aged 25-59 years, those with limited education, and women.7 The sharpest increases are occurring in rural counties, often in regions with longstanding social and economic challenges.89

Why white Americans are dying at higher rates from drugs, alcohol, and suicides is unclear, complex, and not explained by opioids alone. The answer—likely some combination of factors in American life—must explain why the rise in mortality is greatest in white, middle aged adults and certain rural communities. Possibilities include the collapse of industries and the local economies they supported, the erosion of social cohesion and greater social isolation, economic hardship, and distress among white workers over losing the security their parents once enjoyed.910 By contrast, greater resilience might explain why black Americans—who have contended with longstanding structural disadvantages, discrimination, and higher all cause mortality—have not experienced a surge in drug deaths or suicides.

Other data are also enlightening. Over the three decades in which survival advances slowed in the US, educational performance weakened, social divides (including income inequality) widened, middle class incomes stagnated, and poverty rates exceeded those of most rich countries.3 The US is rich, but its wealth is not inclusive.11 Its social contract is weaker than in other countries—those in need have less access to social services, healthcare, or the prevention and treatment of mental illness and addiction. The “American dream” is increasingly out of reach, as social mobility declines and fewer children face a better future than their parents.12


Your Drugs Probably Weren’t Tested on People of Color

And they weren't tested on people with chronic disabilities either.....

https://goo.gl/3FbDBw

40 percent of Americans are people of color, but they comprise less than five percent of participants in medical research. This is one of the reasons they are dying of many diseases at higher rates than white Americans. This is also why many drugs, treatment methods, and other research developments are less effective on people of color. It has led to higher mortality rates, a lower quality of life, and higher healthcare costs.

A 2011 survey by the International Journal of Health Services studied the racial and ethnic disparities regarding quality of life and healthcare costs. The results were damning, concluding that “eliminating health disparities for minorities would have reduced direct medical care expenditures by $203 billion, and indirect losses by more than $1 trillion.” These illnesses ran the gamut from influenza to HPV, obesity to depression, Parkinson’s to skin disease.

And these problems aren’t going away: by 2044, less than 50 percent of Americans will be white. And if current trends continue, medical trials will fail to reflect this demographic shift.


The Thoughtful Vegetable

Very interesting blog, written by a woman supposedly in a persistent vegetative state. Well worth reading.... 

https://goo.gl/8Nny34

I am writing this from the 'other side of the coin' so to speak. I am writing this with adaptations I and others made long ago. If not for this clear writing, it could be said that I was mentally impaired.

First, just what is it I am doing? I am using the pointer finger of my left hand to hit and press letter keys to spell words that I organize into sentences. We then get into paragraph and essay construction that I learned in grade school.

Typing on the computer wasn't instant. Before I could hunt out letters on a keyboard, I had to find them on a communication board. Blinking 'yes/no' for a letter was many years ago, and is where finding and identifying a letter began.

Since I am using only one finger, I must be doing something special to make capital letters and hit multiple keys, like <ctrl> <alt> <del>. Computers come with accessibility features built right in. That particular one is called Sticky Keys. There are many adaptations. This and a lot of computers call the program Ease of Access. An Occupational Therapist in Southern California first set it up for me years ago. It was called something else back then. I don't need all the adaptations now. I just pretty much need the Sticky Keys. (There used to be an important one called Bouncy Keys. What happens on a computer if you hold a key down too long? Too long can be a whole second. I was getting mmmmmaanyyy letters.)

With identifying letters, came the ability to sit up and move an arm by having lots of therapy. It was a combination of Speech, Occupational, and Physical therapies. You can't single out one. It's like a pie. If you have a cherry pie, but only single out the cherries, you have a different dessert. (Cherries Jubilee)