If you need services, resources, info in these times

The Disability Underground Network is a group of disabled advocates focused on COVID-19 related response needs and support for the disability community nationwide. If you or anyone you know is in need of medical advocacy or any other aid support, call 800-626-4959.

The hotline provides information, referrals, guidance, technical assistance and resources to people with disabilities, their families, allies, organizations assisting individuals with disabilities and others needing assistance with immediate and urgent disaster-related needs. For instance, a disabled person in a rural area is now having a hard time getting food, and the hotline network was willing to help.

The hotline is set up to be available for all kinds of disasters, so keep this number. It is open around the clock, 7 days a week, 365 days a year at 800-626-4959 or info@disasterstrategies.org

Stimulus: Congress needs to hear your voice now #WeAreEssential

Action alert by Nicole Jorwic, Senior Director of Public Policy, The Arc (national disability service network)

Here we are again, fighting for our lives in Congressional negotiations – this time during a global pandemic. And the outcome will impact the services people with disabilities rely on, strain systems that provide those services, and may close down service providers all over the country that support people with disabilities to live the lives they choose…

In 2017, the year Congress tried again and again to cut funding to Medicaid, a program that people with disabilities rely on for supports and services, we made them pay attention. But it took people with disabilities and their families coming forward to share their most personal stories, and some literally putting their bodies on the line, to show Congress that Medicaid means life and death. Together we were strong enough to hold off the full repeal of the Affordable Care Act, protect the integrity of the Medicaid program, and show the power of our community…

And, again, it seems the issues that matter to the disability community are being ignored…[O]thers don’t have the supplies for staff to safely serve or quarantine. The direct support professional, or DSP, staff often help people with disabilities with very personal tasks that can?t be done from six feet away, yet the gear necessary to do these tasks safely is scarce. And in the coming weeks and months, we know that some service providers will be forced to close, leaving families like mine with nowhere to go.

But the fight to save Medicaid in 2017 showed that when we band together as one voice, we can make things happen.

Despite the magnitude of what we are facing as a country, this is the time we must once again share our stories. We must demand that Congress address the needs of the disability community in legislation to combat COVID-19.

Here is what Congress should do:

COVID-19 is particularly dangerous in congregate settings… Congress should ensure that legislation includes funds ($10-$15 billion) to support delivery of safer home and community-based services AND funding to support the hiring and hazard pay for the community workforce.

COVID-19 is requiring heroic work from health care professionals from around the country… Congress should ensure that DSPs and home health aides have the supplies they need.

COVID-19 is closing programs all over the country, leaving people with disabilities and their families scrambling… Right now, the legislation passed will not cover paid leave or paid sick leave for family members, like me, who may need to miss work to provide care for adults with disabilities and aging family members…

The COVID-19 pandemic economic impact is causing Congress to consider cash payments to individuals. People with disabilities should receive an equal amount of stimulus as everyone else without it impacting their access to Medicaid and other social support programs with strict asset limits. Congress should also boost Social Security and Supplemental Security Income payments to ensure that people with disabilities have the resources to protect themselves.

Call your members of Congress at their home offices or at the Capitol Switchboard (202) 224-3121. Tell them #WeAreEssential.

ACT NOW: Coronavirus Relief for Seniors and People with Disabilities Act

While we huddle in our homes this weekend, the U.S. Senate is putting together another deal to offload dumptrucks full of our money to their donors (“rescuing the economy”) while we benefit from none of it (“socialism”). We’ve seen this movie before, over and over – we’ve memorized the dialogue! This latest bailout will probably be voted on tomorrow, Monday.

But there is a bill offering a voice to our most vulnerable populations: seniors, people with disabilities and caregivers. Call the Capitol Switchboard (202) 224-3121, ask your senators for support. According to AARP, Sen. Casey’s (PA) bill provides:

funding for nursing home surveys to promote infection control,
Older Americans Act programs including home delivered meals,
The National Family Caregiver Support Program,
supportive services,
elder rights protection,
funding for the Commodity Supplemental Food Program,
Medicaid home- and community-based services grants, and
medical assistance to more people for Medicare cost-sharing during the Coronavirus emergency assistance period.
Ballscrew

Speaking Out

#UHateDisabledPeople

Google Maps wheelchair option

Looking up wheelchair-accessible directions to where you’re going? This really works. From Google Maps:

View routes by wheelchair in select major cities with Google Maps. Just input your destination into Maps, tap “Directions” then select the public transportation icon. Then tap “Options” and under the Routes section, you will find “wheelchair accessible” as a new route type.

They’ll be rolling out more locations. But I’ll keep using Google Maps Street View to case out curb cutouts, threshold steps and the like. Even after phoning first, there’s been way too many surprises.

From Bowl to Belly: The Obi eating device guide to food

Find out What Works and What Doesn’t

Welcome to readers of the New Mobility review of the Obi eating device. While pricey, the Obi does an excellent job of restoring independence at mealtime. It can handle most types of foods, although you have to experiment because some dishes work better than others. After three years using Obi, these are the foods that work with the robot the best and worst:

– To fit in the spoon, you want chunks smaller than an inch.

– Long potato skins and stringy spaghettis are not so good, nor thick, glutinous masses like sticky mashed potatoes.

– Leafy salads and the Obi exist in different dimensions: the Obi scoops and scoops like Where’s my date? – while the salad sits there wondering if he’s ever going to show up.

– Thin soups, ironically, work great, while thicker ones like stews can get messy. It’s quicker to shoot the broth with a straw and then Obi and I go in to wipe out the surviving chunks.

– Applesauce works great after I throw in a handful of chia seeds to absorb some water. The same with one of my wife’s homemade chilis that sometimes turns out a little soupy: in goes Chia seeds or nutritional yeast, or even better, stir in a handful of crumbled tortilla chips to absorb liquid.

– Some meals go perfectly, while others you end up wearing on your sleeve quite literally. Don’t fill the first bowl to capacity, or it may flick your cornflakes back at you. In any case, you have to wear a dinner napkin. None of this is to scare you off though, because the Obi gets the job done. A couple of dropped bits on your lap napkin is nothing for what you get here.

About that price, I’ve not yet found the case where Medicare covers it, but Medicaid has covered at least one unit, in Missoula, Montana. Obi is listed with a federal GSA contract, to help get it to veterans. The manufacturer, Desin LLC, offers rental and lease-to-buy options, as well as other funding alternatives. My hope is that the more popular this quality device becomes, the more likely it gets picked up by Medicare, and once Medicare covers it, everyone will.

In the meantime, putting out the money for a relatively recent device is scary; it was for me. That’s why I wrote this review, to say that I took the step and found it worthwhile. I have no connection to the company, other than as happy customer.

This column is dedicated to the late, great David Hare, and his wonderful wife. I first saw the Obi at the 2016 Chicago Abilities Expo. It was also the day I met David, who passed away from ALS in 2017. Without use of his arms, David controlled the Obi with his feet. He showed me around the device, and assured me that if I did go ahead with the purchase, I would not regret it. We bonded as skydivers, but he’d accomplished so much more than me. He felt like a kindred spirit, though we only got to speak twice. I didn’t purchase the Obi until many months later, when my back was up against the wall, but you were right, David. Thanks, man.

Twice, the Hares journeyed quite a ways to Chicago and back, because they believed this was truly a device to help people. In their spirit, I write this review for you.

Article about Obi, featuring the late David Hare.

Why Are People Clamoring for Healthcare Reform?

In some notes, I saw that in 2011 we were paying $260 a month for my Medigap policy. Now, eight years later, we are paying $400 every month. That is a 65 percent increase. No way our income went up anywhere near that much. Just saying.

My insurer will keep cranking up the increases because at this point no one else will take me. At the rodeo the rider has to hold on for eight long seconds. We’ve got to hold on for 11 more years until I’m eligible to enter the federally protected open marketplace.

So, uh, not looking for free stuff. Rather, not wanting my wife to wind up destitute because of my trick nervous system. Got it?