Sen. Tammy Duckworth, Disability Warrior

These are desperate times and Sen. Tammy Duckworth (IL) minced no words in a USA Today editorial, calling out Republicans on behalf of people with disabilities and those most at risk for COVID-19.

1. The virus spreads like wildfire in congregate settings like nursing homes, causing 40 percent of all COVID-19 deaths. In their bill and negotiations, Republicans ignore this. Duckworth:

[T]the GOP refused to provide the urgently needed 10% increase in funding for Medicaid Home and Community Based Services — despite that we know that Americans with intellectual and developmental disabilities are killed at staggering rates when infected with COVID-19, and despite that Republican and Democratic governors alike desperately need us to pass this commonsense policy that would save lives.

2. She shows Republicans’ proposal to limit business liability actually suspends accessability under the ADA. Never let a good crisis go to waste:

Disability rights are human rights, and these civil rights must never become optional benefits that can be stripped away whenever it’s convenient or cheaper for employers or others in power. Allowing businesses to exclude employees with disabilities from reopening plans is exactly the type of discrimination that the ADA sought to abolish. Yet the Republican HEALS Act could relegate millions of Americans back to second-class status, sending the message that our community can be cast aside if the costs to companies are too high…The passage of the ADA was supposed to consign workplace discrimination stories to the history books… Yet here we are in 2020, and Senate Republicans are shamelessly using a deadly pandemic as cover to gut the ADA and hoist that brick wall of exclusion right back up.

Duckworth wrapped up a big week by addressing the virtual Democratic National Convention in primetime. She said national security and our troops’ well-being rely on solid leadership, which is lacking under a president she labelled “Coward-in-Chief.” She wasn’t picked for VP, but continues as a steadfast champion for those with disabilities and the troops, who will bring her priorities and advocacy to a likely role in any new government.

Your Vote Counts: The FAQ for voting

Today is Texas primary runoff election day, choosing the rest of the candidates for November. For National Disability Voter Registration Week, ASAN – Autistic Self Advocacy Network – has published a voting toolkit. Your Vote Counts: A Self-Advocate’s Guide to Voting in the U.S. gives you the what’s-what and how-to to get you up and casting your big vote this November. But it’s important to get going on it now.

Thanks to the League of Women Voters Houston and Linda Cohn for the heads up. The League of Women Voters has a ton of info about elections, candidates and issues.

Monday: Rev up Natl Disability Voter Registration Week

July 13-17 AAPD kicks off its REV UP campaign to get 35 million disabled Americans registered and to the November voting booths. Their website contains a ton of materials to sign up you and your community members. There’s all kinds of ways to participate and make a big impact from home.

– Share the Online Voter Registration Portal. Direct folks to AAPD’s custom registration portal at weall.vote/aapd, powered by When We All Vote, where they can register to vote in just a few minutes.

– Host a Virtual Event. Host a virtual event to help voters in your state understand the rules, disability voting rights, voting options, safety-protocols, and key dates for the 2020 elections.

– Organizing Virtual Text-banking. AAPD has partnered with When We All Vote to use OutVote, an app that helps individuals to use texting to get out the vote among their friends and family. Check out instructions for using OutVote in our NDVRW 2020 toolkit.

– Activate your Social Media. Use the power and reach of social media to share our online voter registration portal weall.vote/aapd, motivate your network to register and vote, and inform voters on your state’s election rules and dates.

– Use their NDVRW 2020 Toolkit. The Toolkit provides key resources and info.

Get organizing.

ADA “a landmark achievement, but the fight for equal rights is far from over”

The Americans With Disabilities Act turns 30 this month. NPR’s 1a episode with advocates Judy Heumann, Alice Wong and Britney Wilson, how far we’ve come and how far we’ve got to go.

disabled protesters with ADA signs

Webinar: Disabled Texans Can Vote Safely and Easily, If You’re Prepared, Advocates Say

(See the links at end of article.) In this election year affected by the pandemic, disabled Texans have a number of easy and safe options to cast their votes: curbside voting, requesting assistants to help, going to front of the line, and emergency late voting where they appoint a representative to take in their registration and return with a ballot, in addition to voting by mail. The options were outlined by Christina Adkins of the Texas Secretary of State’s office in a webinar on Thursday called “Voting Accommodations in Texas – The Laws and the Options!” The panel was moderated by Grace Chimene, President of the League of Women Voters of Texas.

Voting by mail is a hot topic now, and the participants urged turning in their applications as soon as possible. This allows time to work through any kind of follow-ups or difficulties that need to be addressed. Among the ways to qualify are being away from your home county, being sick or disabled, or being incarcerated. Can you claim fears of COVID-19 infection as a reason? If you have a pre-existing condition or are otherwise at-risk, yes.

Jeffery Miller of the Disability Rights Texas said that you are the best judge. If you feel you are disabled, then mark it so on the vote-by-mail application. He recommended trying to keep your signature consistent between documents. If you have questions or problems, contact your county elections office.

Adkins said you must follow up your online application with a signed copy within five days. Also you will eventually receive a receipt after you apply. If the receipt does not come, or if you have any other questions, contact your county elections office.

She said that election sites will have health protections like PPE. She said be sure to wear a mask.

Check your county’s website first. Vote early, they said. Those with questions may contact the Secretary of State’s office or Disabled Rights Texas at the end of this article.

“There is an army of support out there” to help you vote, Adkins said. She said to be prepared: “have a plan” to vote.

This July 13-17 will be National Disability Voter Registration Week, to raise awareness of these issues.

The message emphasized by all three was to be your own advocate, to speak up – ask!

Resources:
Voters with disabilities – https://my.lwv.org/texas/voters-disabilities-0

Disabilities Rights Texas – https://www.disabilityrightstx.org/en/home/
Voting Resources for people with disabilities – https://www.disabilityrightstx.org/en/category/voting/

Texas Secretary of State – votetexas.org
Voters with Special Needs – https://www.votetexas.gov/voters-with-special-needs/
Health Protocols For Texas Election Officials And Voters – https://www.sos.texas.gov/elections/forms/health-protocols-for-voters.pdf
COVID-19 (Coronavirus) Voting and Election Procedures – https://www.sos.texas.gov/elections/laws/advisory2020-14.shtml

League of Women Voters of Texas
How to be a Texas voter! – https://my.lwv.org/texas/how-be-texas-voter
What is on the ballot? – https://my.lwv.org/texas/voting-elections/what-ballot
VOTE411.org

Election Protection
For any concerns or problems voting contact texasvoterprotection.org
Please submit any questions to: info@lwvtexas.org

BLMing From Home

Ways to support

It’s frustrating to watch history from the sidelines. Now is the third time I’ve felt the world shifting off of its moorings: the fall of the Soviet empire in 1989; September 11, 2001; and what’s sweeping the country today. Tiananmen Square felt the same way but turned out horribly. Who knows where we’ll be next week, or next year?

Uncertainty is one thing, but simply watching is what feels terrible. I feel the need to participate and give my support. I don’t spend time bemoaning my fate or anything, but there are certainly times, sitting in this chair, that I feel the times passing me by. I also feel sub-100 degree heat indexes every day here that are smacking me down. With MS, heat is my kryptonite. I can’t even count the summer days when I’ve been all right I’m all right I’m all right I’m i n c a p a c i t a t e d. Not to mention the need to social distance by those who are at-risk.

Fortunately Alice Wong of the Disability Visibility Project steps into the breach.

She put together a list of ways for us to support Black Lives Matter, blacks with disabilities, and the movement on the streets of America. It includes black writers, articles, podcasts, documentaries and other resources to keep plugged into what’s going on.

More support and reading resources are here: https://disabilityvisibilityproject.com/2020/06/06/26-ways-to-be-in-the-struggle-beyond-the-streets-june-2020-update/

Finally, here’s a List of Bail Funds for Protestors across the Country,
updated regularly with help from the National Bail Fund Network.

Challenges reopening assoc. for visually impaired during COVID: “It’s a lifeline.” “They are really integral to our lives.”

bsa

The century-old Blind Service Association provides numerous vital services for the visually impaired in Chicago: medical, counseling, transportation, activities, even reading mail and books. But it remains shut down and there are a lot of questions about when and how it would reopen, according to the Chicago Tribune.

BSA awaits guidance from Illinois Department of Public Health. What will be the new protocols with this at-risk population? For instance, how will those who rely so heavily on the sense of touch navigate the world wearing gloves that keep them safe? Many of those affected cannot web conference, for a number of reasons. Meanwhile those who rely on institutions like BSA are living in uncertainty and loss. They aren’t shrinking violets; their entire lives have been upended. And they wait.

Here’s the nugget, from Alexander Brown, executive director of Friedman Place, an assisted living facility for the visually impaired on the North Side:

But, again, and is often the situation, people with disabilities, people who are blind are not at the table. So, the folks that are making the decisions, just soliciting information feedback, aren’t asking the community of the blind. And that’s a real problem.

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.”

Fridays: ‘Ask an MS Expert’ webinars

12 PM Central Time on Facebook at National MS Society

or on the web at https://www.nationalmssociety.org/MSExpert

For the website you have to register first. If you miss it live, you can also find the recorded webinars there.

Bring your Covid questions or anything else.

Game Changer: Making a transcript of recorded interviews, and it’s free

This has been a huge and tiresome obstacle to me for years. I’ll record interviews, mostly over the phone, and then it comes down to transcribing all or part of the interview for a story with accurate quotes. As a quadriplegic working with voice recognition and a mouth stick, this is so time-consuming as to be prohibitive. I take care for accuracy, but don’t have money for transcription services.

For so long I’ve searched and fiddled for solutions, and today I’m excited because I’ve finally found one that works! And it requires no money or downloads. I hope it will help disabled journalists and others. All you need are a video editor and YouTube.

Step 1. You must make a video from your taped interview. I found Windows 10 Video Editor already loaded on my laptop. Though I’m terrible with new software, it is so easy that in 20 minutes I made my first video. I started a new project, made a title frame and adjusted its length to the length of the taped interview. Then I uploaded the interview as a background audio file. Hit convert, and presto.

Next I uploaded my newly minted video to YouTube. I set access to private, plus I had to verify my account before I could upload my 21-minute file. Unverified accounts can only upload videos of something like 15 minutes or less. (Verifying is easy and I’ll let you look it up.)

Step 2. Looks like you can make a transcript of any video using this process:

When you play the video, underneath it you’ll find a line of clickable options: thumbs up, thumbs down, share, save, and options (…). Click options. Then click Open transcript.

The transcript will appear in a pop-up. At the top, click options (vertical …). Click Toggle timestamps.

Now you can copy and paste the entire transcript.

I know: the joy of transcripts? I don’t get out much. Now I’m off to write the story.