Tag Archives: Disability

Federal and State: In Pandemic, Disabled Americans Fight a Two-Front War for Their Lives

Cathy Cranston of Austin, Texas, paid a visit to a friend. He uses a wheelchair, and the community attendant whom he relies on for getting in and out of bed, toileting, dressing, meals and more, has young children and missed a few days. During the COVID-19 pandemic this is common: Most community attendants are mothers or grandmothers, Cranston said, and school closures have them scrambling for child care. As head of advocacy group Personal Attendant Coalition of Texas (PACT), she is also a grandmother and a professional community attendant for 30 years, but this one she’s doing for free, because he’s a friend and she wants him to keep his home.

“But the reality is, not everybody has that informal support,” she said, “so then what happens is they go without.”

Another man in the Round Rock, Texas, area is one of those without “informal support,” the industry euphemism for unpaid family, friends or other individuals who fill in gaps in service, whom Cranston says the state often relies on and even expects. After undergoing numerous surgeries for the slow-healing, excruciating pressure sores that strike people in wheelchairs (often because of insufficient help that leaves people stranded in their chairs), the man fights to stay out of institutions.

Sometimes he can’t find attendants, Cranston said, and “he makes a decision to stay in bed and just gets up when he can… otherwise he’s in bed… It’s not a good quality of life and it only makes it worse for him… That already existed before COVID-19 and this pandemic’s only exacerbated it.”

Even before COVID-19, the home-care system in Texas was under severe pressure. Community attendants care for 178,000 people with disabilities and seniors living at home or otherwise in the community, and are paid through Medicaid at a base wage set by the legislature that is far below other jobs, resulting in a median 67 percent annual turnover rate. Adding in the severe disruptions of the pandemic makes people with disabilities and the elderly face the prospect of institutionalization at the most dangerous of times:

46 residents and staff members test positive for COVID-19 at Round Rock nursing home

COVID-19 is ravaging nursing homes. Government records show why

‘Playing Russian Roulette’: Nursing Homes Told to Take the Infected

Coronavirus crosses grim milestone of 10,000 deaths in US nursing homes

Attendants’ “very, very low rate of pay” and lack of paid sick leave “present the risk of bringing the virus into the home of a person who is at high risk, which is a foolish plan to say the least,” said Dennis Borel of the Austin-based advocacy group, Coalition of Texans with Disabilities. “A failure of the community-care system would put our highest risk population into the riskiest locations. That’s a pretty frightening scenario.”

But this isn’t only about Texas. Nationally, the essential workers who provide home-based community services (HBCS) are low-paid and in short supply. With the advent of COVID-19, the frailties of these systems are being pushed to the brink. The warning signals from this and related issues have mobilized the disability community to protect their rights and access to treatment and critical resources like HBCS. In Washington, all eyes are on the stimulus: Congress has spent about $3 trillion without meeting vital needs of an at-risk population.

“There have been certainly some important first steps that have been included that are quite helpful, but many disability community priorities have not been included,” said Alison Barkoff of the Center for Public Representation, one of numerous national groups advocating for the disabled. “Specific priorities of the disability community have not yet really been a focus for Congress.”

The second bill, the Families First Coronavirus Response Act, included a 6.2 percent increase in Medicaid, which funds HCBS. It provided some workers with paid sick and family medical leave, including provisions for family members to step in when service has been disrupted due to COVID-19 or otherwise (although only 12 percent of essential workers are covered). The third bill, Coronavirus Aid, Relief, and Economic Security (CARES) Act, funded state and local governments with $400 billion, and issued $1,200 Recovery Rebates to individuals, which advocates made sure would not count against means-tested programs like Medicaid and Social Security. It also funded state emergency response, disability housing and independent living, and special education.

“So there were some things in there, but we have been advocating very, very hard on targeted funding to home and community-based service systems,” Barkoff said. “We know the most important things that we can do to help people with disabilities who are at high risk for being infected and having really poor outcomes if they get the virus is helping people stay at home… It’s the concept of an HCBS state grant program that is really a top priority.”

This month the House of Representatives passed a $3 trillion Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act. It includes over $900 billion to state and local governments, a second round of $1,200 Recovery Rebates, a 14 percent boost in the federal contribution to Medicaid, a 10 percent boost in HCBS and supports and paid leave for attendants and family caregivers. It faces resistance in the Republican-controlled Senate, where Majority Leader Mitch McConnell cited the need to slow spending.

While national advocates push for the follow-up stimulus, Barkoff urges activists to put pressure on the states, too.

“On the HCBS side there’s so much flexibility that states have,” she said. “There are a number of types of emergency applications that states have been submitting to the Centers for Medicare and Medicaid Services, and they have a lot of flexibility about… some positive things that can make people accessing services easier, bringing new providers online, waiving requirements around pre-authorization, or allowing people to get longer fills for their medications or supplies than would normally be allowed, and that is also another place where I think state advocacy is so important.

“Then [there] is these big chunks of money that have gone to states, whether it’s the 6.2 percent [Medicaid] bump or the big pot of money that went to states for recovery or even the education funds – it’s going to be really important for the disability community to advocate at the state level so some of those funds flow into disability systems, whether it’s about special education or HCBS systems. I mean, you could see those monies going completely to other priorities at the state level.”

On the care-rationing issue, after successfully urging the Department of Health and Human Services’ Office of Civil Rights to release a statement underscoring the equal rights of the disabled for access to treatment and equipment such as ventilators, CPR and allied groups focused on state-level actions by filing complaints against eight different states challenging their potentially discriminatory Crisis Standards of Care plans.

State-level discrimination can extend to PPE as well, Barkoff explained.

“In terms of access to PPE, you know there’s limited supplies and in many states community providers are not considered essential health workers, or they’re providing [PPE] in institutional settings but not in community settings. To me, that is discrimination and really places people at serious risk of getting infected for COVID-19. It sounds like some people who use equipment at home are having a hard time getting that equipment… because it’s being prioritized to hospital settings.”

In Texas, Cranston heads the advocacy group, Personal Attendant Coalition of Texas (PACT). When asked about social distancing in her close-contact line of work, she laughed at even the notion. The fears of attendants and recipients both over bringing the virus into homes has injected a whole new level of uncertainty into being able to provide service. “That’s why it was so important to have PPE place from the very beginning. Our state wasn’t fully prepared and we understand that. Nobody thought, ‘Oh gosh, here comes a pandemic,’ but the reality is… our state leaders have a responsibility to the people that receive services and… they have a responsibility to have these these things put in place.”

Cathy’s husband, Ron, relies on HBCS and said that one of his caregivers lost three-quarters of her hours due to COVID-19. Under the system, arranging caregivers is his own responsibility, and he said that so far “I’ve been very fortunate” to receive his 25 hours of weekly care, but concerns about safety and unpredictability are a constant. For example, attendants are predominantly female and some lack adequate childcare with schools being closed.

According to the Cranston and Borel, low wages and lack of benefits are forcing caregivers out of the profession, leaving clients facing the prospect of institutionalization. Fifty-four percent of attendants rely on means-tested assistance like SNAP. The base pay of these essential workers, as set by the legislature, is $8.10 per hour. By contrast, she pointed out that local grocery stores are hiring, increasing wages and taking steps to keep their workers safe while offering hazard pay, leaving the important work of attendants underpaid by comparison. She said the median age for attendants is over 45 years old, and the low pay is not bringing younger workers into the field. “It’s not sustainable.”

“The chicken place a block from my office starts pay at $15 an hour. There’s a sign at the pizza joint around the corner that says our drivers make up to $20 an hour,” Borel said. “We have gotten into a society that values a pizza or a chicken sandwich more than it values the dignity and health of our fellow human beings.

“They’re spending massive amounts on federal supports to bail out certain industries. So we’re going to bail out the cruise ship industry before we’re going to bail out our direct-care workers who go into the homes of people at the highest risk of severe illness. I understand there’s low-paid workers at hotels and cruise ships and they need to be taken care of as well, but if you’re really interested in the workers, why don’t you include the workers currently at the frontline of this pandemic?”

Cranston joined Barkoff’s call to boost HBSC pay and sick leave with the billions flowing to states through federal stimulus dollars and increased Medicaid funding. For Texas, she called on Gov. Greg Abbott and the legislature to use Budget Execution Authority to reapportion funds to solve this long-standing problem, or to tap into a $8.5 billion Rainy Day Fund maintained by the state.

She also advocated Medicaid expansion, which in Texas would insure more people at 90 percent federal expense and would bring home tax dollars that her state pays to effectively expand Medicaid for other states. Part of the Affordable Care Act, Medicaid expansion remains available to 14 states.

Whether at the state or federal level, Barkoff said that in the new coronavirus environment of empty offices and unanswered phones, activists are having success using email and social media. They’re pressuring the leadership using shared hashtags and videotaping their personal stories as attachments, with impassioned pleas like Cathy Cranston’s:

“We have to address this issue. It is not going to go away and… they must do it now because what… we’re saying is people with disabilities’ lives are not worth it, as well as the workers’ that provide those services. We’re saying, let them die, it’s okay.”

Get Off Your Duff: Political Volunteering With a Disability

The 24-hour cable news stations won’t stop babbling about it. Your Facebook friends won’t stop raging about it. And idiot pols won’t stop tweeting about it. These days, there’s no escaping it — and you know exactly what it is: politics.

Tired of feeling frustrated, I wanted to get involved. There’s big stuff going on — 24 candidates and more each time I edit this article — and I didn’t want it all to pass me by. I began poking around my rural area 70 miles north of Houston, looking for ideas how someone with MS could participate from a wheelchair. The folks at my local ADAPT know how to get things done in the accessibility and medical spaces, but I wondered about other opportunities in addition. Maybe my journey will give you ideas in your area.

My article in New Mobility.

Get Off Your Duff: Political Volunteering With a Disability

How to be disabled in America

Here is a huge collection of links with very practical information for living with a disability (including applying and living on disability insurance), caregiving, in-home and transportation services, low-income assistance and so many other things. I urge anyone touched by disability to at least browse the links, and I guarantee you’ll find something that’s of interest. This is going in my permanent sidebar to the right.

Links from How To Get On blog.

Graphic from UC Davis Center for Poverty Research.

Your access to living is under attack: Call your senators to protect the ADA

This is a few weeks old, but important. Washington is about to pull 25 years of progress out from under our feet, in the name of deregulation. The House of Representatives passed H.R. 620, stripping the ADA of its enforcement provisions. If this passes the Senate, life for the disabled becomes a coin toss whether or not you can get into a public place with your wheelchair, for instance. The burden of accessability becomes shifted onto you: You have to demonstrate why the movie theater, restaurant or fire escape needs to be accessible.

I just returned from a trip to San Antonio, Big Bend and West Texas. Beautiful country, I recommend it to everyone. We had to stop ourselves from pulling over to ooh and ahh every three minutes. The only bad part of the trip were some of the accommodations. Half of them perfect, but half were infuriating. We found unusable bathrooms, narrow doorways, steep or blocked off ramps, and bad information given by staff and owners. This after 27 years of mandated ADA standards. What will we find when we strip away those mandates?

If we don’t speak up, we may just find out. Call the Capitol Switchboard (202) 224-3121 and ask for your senators. Tell them to oppose H.R. 620 The ADA Education and Reform Act of 2017. This legislation isn’t reform at all, it’s regress, and it’s dangerous.

The Obi Feeding Robot – Simple, Effective, Beautiful

I have fought and fought to maintain arm strength and the ability to feed myself. A huge boon to that end was purchasing the specialized eating utensils from Dining With Dignity (http://diningwithdignity.com/), designed and made by an disabled entrepreneur.

Unfortunately my battle passed me by eventually. From there it goes to being fed by a caregiver. Inevitably that leads to aspirated food – “going down the wrong pipe.” That is just human nature. What comes naturally to most everybody else requires concentration and synchronized movement when someone is helping you to eat. It is human nature to hurry the process along because you do not want to waste another person’s time, you feel bad enough about it already. And aspirating food can be deadly. In short, eating becomes a chore. It becomes even a dreaded time, and here’s where you lose weight.

Enter the Obi. I saw it demonstrated at the Chicago Abilities Expo. The late David Hare traveled from Detroit to offer his own fantastic experiences with this tool. At the time he had been using it for a year and he swore that the independence, if you go for it, was worth the price. Now the price of admission is not cheap, a few thousand dollars, and the device is still being worked through in terms of reimbursement through insurance. But compare it to what else is on the market – and in the same aisle at that trade show was another feeding device that was 10 times the price. (It goes without saying that the number of visitors at that booth was pretty low.) After the show I struggled for several months more, and even dabbled with a liquid diet where everything came through a straw, until finally with my wife’s encouragement, we took the leap 11 months ago. The experience has been wonderful.

It’s Simple: The Obi his three buttons: one for power and two for programming. Programming consists of holding down a pair of buttons simultaneously and positioning the spoon in your mouth. That’s all. The robot remembers the position and that’s where it returns to.

Then there are two switches. You can opt for buttons or touchpads, and can position them for hands or feet or wherever. One switch moves the spoon between the four bowls that are included. (Four bowls in one solid plastic overlay that is machine-washable.) The other switch activates the spoon. It is as simple as that, no manuals or googling required to dig right in.

It’s Effective: With the Obi you choose what and when to eat. It cuts out the hurrying that inevitably comes with a person-feeding-person situation. Without the rushing, the danger of food aspiration goes down. Finally, it lets the user savor food and flavor again.

It’s Beautiful: I’m not a big aesthetics guy. My style is what’s serviceable and affordable. That said, the Obi is beautifully designed. Its looks are sleek and non-institutional, futuristic without being gaudy or too clever.

A plastic spoon fitting snapped several weeks ago, probably from repetitive stress. Customer service was all over it, sending many more replacement parts than requested (the device has a one-year warranty), and offering personal tech support to make sure the unit was back up and running. This small company really gets the importance of the service they provide.

But the Obi’s real beauty lies in the quality of life it gives you. To grant someone leisure time during a meal, whether it’s for the user or the caregiver, it is truly a sweet gift for your lifestyle. (The same goes for allowing one to enjoy social meals again, freeing up the user or a caregiver to talk.) A meal becomes something to look forward to again, instead of a box to be checked and get past. That to me is the definition of serviceability and beauty.

Considering all of these benefits and measuring against what is out there, the Obi is affordable if not cheap. I have heard word of mouth that private insurance has covered the device, but have seen nothing with my own two eyes. My own claim to Medicare is still pending. I will update when I learn more.

Meet Obi: https://meetobi.com/

It’s Those Blasted Blastocytes or Me!

God Says Let the Disabled Die, Al Stefanelli, freethoughtblogs.com

A short, informative presentation about stem cell research, its successes and its detractors. The writer makes a noteworthy point: Considering all the early successes in this line of research, those who continue to oppose it are saying that God values eight-cell blastocytes as highly as men, women and children suffering with spinal cord injuries, MS, Parkinson’s, ALS or any of scores of wretched disorders that someday might be treatable. Sound like a harsh statement? It’s not.

I’m sympathetic to the concerns of stem cell opponents. They’re not monsters. For instance, I understood the 2001 Bush decree on stem cell research. Some were displeased on both sides of that decision. What are you going to do? It was a tough call to make.

In a few years the situation had changed. Research scientists indicated that the available material was inadequate, limiting. We also learned, through a counterproposal, that hundreds of thousands of blastocytes were routinely being destroyed by fertility clinics every year. In other words, healing stem cells flushed and wasted. If a fertilized human egg deserves honor, how is that reflected by flushing it down the toilet? I mean, shouldn’t it do some good, its “life” serve some purpose? Especially with fully-developed humans everywhere already suffering and desperate for treatment? This should be a no-brainer, right?

But no matter. The anti forces had dug in their heels. More triumph of dogma over reason. Politics is fought not in the mind, but in the heart. Not from logic, but from feelings. At the time I was outraged, but politically I was a more optimistic person then.

It didn’t help that all of this was being debated in an election year. To John Kerry’s credit, he pressed this issue. But rational argument makes little impact in the face of partisan, tribal appeals. When 1 + 1 = 3 becomes a Frank Luntz talking point, then one-quarter to one-half of Americans will gladly unlearn their first day of arithmetic.

This is another issue to keep in mind as November looms. It’s ironic, and smart, that the far Right so disliked Mitt Romney during the primary season that they would support absolutely anyone else. Here is a candidate so craven for the presidency that he will change his stance multiple times in a single day. Now the far Right has put the fear of god in him. When they beat their tribal drums on this, one of their pet issues, do you think the marionette will not do their dance?

With the Supreme Court decision upcoming, watch this clip from The Young Turks cataloging some choice comments by leaders of the wackadoodle circus, as they describe what devastation and utter apocalypse will take place–was already supposed to have taken place–when Health Care Reform was passed.

Besides the parade of stupidity on display here (you’ve really got to see this), my favorite part comes at the beginning when Cenk Ugyur makes the great point that it’s only until this year that (some) Democrats decided they should try defending this thing instead of slinking in the shadows. Think about it: Democrats lost the PR war to the gang making the open and ridiculous falsehoods you see here. Cenk is at his best and most passionate on these type of issues. Where is your blood? Show me something!

Dramatic Findings About Women as Alzheimer’s Caregivers, Alzheimer’s Weekly. “6.7 million women caregivers devote some 10 billion hours per year–working out to about $126 billion in unpaid labor.” One of those women is my friend Trudi, who suffers the effects of MS while she cares for her mother with dementia. There’s a lot of desperate, hurting people out there.

Washington Nationals third baseman Ryan Zimmerman’s Night at the Park fundraiser raises $200,000 for MS, Washington Times. Zimmerman’s mother has MS.

Hundreds of videos from disabled people, living their lives. You can do it.

Marine John Peck, who lost arms and legs at war, goes skydiving, WITH VIDEO, Fox6 Milwaukee (thanks to my friend Helen at Skydive Midwest, Racine WI)

Jack Osbourne denied job because of his recent MS diagnosis, New York Daily News. Celebrity news, that brings attention to real-life problems. Wishing you godspeed and strength, Mr. Osbourne. If you happen to be reading this, consider coming to Rochelle, Illinois, on September 8 for Skydiving for MS. We’ll show you what to do with that MS.

The Coolest Thing I’ve Seen All Week: Welcoming to the world my brand new niece! Of course I knew well beforehand that I would love her, but as I took her, only days old, into my lap, feeling her life, sharing her breath, remembering vividly the night (not so very long ago) that her own mother was born, I could feel my heart expanding and conforming to hers. To life!