Opinion by Alice Wong, via CNN.com, February 22, 2023

Editor’s Note: Alice Wong is the founder of the Disability Visibility Project and author of “Year of the Tiger: An Activist’s Life.” She tweets @SFdirewolf. The views expressed in this commentary are her own. View more opinion on CNN.

CNN — Last June I spent a month in the ICU due to several medical crises that left me in a weakened state without the ability to eat or speak. When I was discharged, there were numerous urgent concerns: finding caregivers to help me with intensive health care needs around the clock, staying on top of all of my medical appointments, being able to communicate, and affording all of the out-of-pocket supplies and additional private-pay care I needed. I was fortunate to have a friend who launched a crowdfunding campaign to help with some of those out of pocket costs.

My family and I worked hard to find a set of four private pay caregivers to supplement the care they already provide for me. But with any employer-employee situation, things can happen accidentally or at the last minute that throw a wrench in an employee’s work day. When your life is entirely in the hands of an employee those wrenches can have devastating consequences. One time a caregiver was supposed to start her shift at 7 a.m. and she never showed up. I was awoken by my dad around 8:30 a.m. after having laid in my feces for over two hours. I spent that day in a vortex of rage and despair – and it wasn’t the first time this happened with one of my caregivers.

What I did not do was report my caregiver to the authorities or fire her.

I am acutely aware of the power dynamics at play between a care provider and recipient, and the devaluation and lack of investment in care work, which is rife with low wages, unsafe working conditions, exploitation and abuse.

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by Michelle Diament, DisabilityScoop.com, February 21, 2023

The Social Security Administration is looking to make a big change to the way that it determines monthly payments for people with disabilities receiving Supplemental Security Income benefits.

Currently, SSI beneficiaries can see their payments docked — often by one-third — if someone else regularly provides them with meals or groceries. But under a new plan that would change.

In a proposed rule published this month in the Federal Register, the Social Security Administration said it wants to update its regulations to exclude food from the way it calculates what’s known as “in-kind support and maintenance.” In addition, the agency intends to tweak its definition of income to allow for this exception.

By Susan K. Livio | NJ Advance Media for NJ.com, January 29, 2023

Since 2018, Children’s Aid and Family Services has used video cameras to keep a close eye on the residents inside the 18 group homes it runs for people with developmental disabilities in north Jersey.

The Paramus-based nonprofit spent about $10,000 a home to install cameras in doorways, living rooms and kitchens and train employees what to do, or not do, when a resident is experiencing a behavioral crisis, said Melinda Iannarone Geraghty, the agency’s vice president for Disability Support Services. The video recordings are evidence when investigating a resident’s injury and an allegation of abuse.

By Elaine S. Povich, Stateline | January 24, 2023

Numerous websites promise to qualify any pet as an emotional support animal that the sites claim can go nearly anywhere — inside restaurants and stores, into “no pets” apartments and throughout college dorms. The easily obtained certificates are making it tough for states to crack down on fake support animals without running afoul of federal fair housing or anti-discrimination laws.

Emotional support animals, which are supposed to help people overcome anxiety or other psychological ills, are different from “service animals,” which are trained to help people with disabilities navigate their surroundings or to warn owners of physical ailments such as low blood sugar.

There are specific criteria for service animals in state or federal law, mostly having to do with training or the performance of specific tasks, and the animals are protected by the Americans with Disabilities Act. Emotional support animals don’t have the same ADA protection.

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By Karen Yi, Gothamist.org,  January 19, 2023

NJ Transit has six months to start improving its Access Link public ride service foar people with disabilities, after the U.S. attorney’s office found a pattern of late trips and excessively long rides.

Gothamist found a similar trend in a review of more than five years of ridership data provided by NJ Transit, and in interviews with longtime passengers. Gothamist additionally joined a rider with a brain injury for four trips last summer. One time, the driver arrived four hours after the appointment window. During another time, the driver got lost.

NJ Transit agreed to improve measures of its reliability, like how often it picks up riders later than scheduled, in a settlement with the federal government in December. But advocates and riders say if Access Link wants to substantially change, it’ll need far more drivers. Yet the number working for the service has been on the decline over the last few years. Access Link had nearly 700 drivers in 2019 but that number dropped by hundreds during the pandemic, NJ Transit records show. In the last few years, the rate of late trips also ticked up.

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New Mobility,  October 28, 2022

As a manual wheelchair user himself, Colorado state Rep. David Ortiz knows how critical timely repairs can be when your wheelchair isn’t working. Something as simple as a missing bolt can be the difference between independence and bed rest, yet those simple solutions can take days, weeks — even months — to secure because of insurance and provider complications.

“I don’t need pre-approval for every stupid little repair I need on my chair,” says Ortiz, the first wheelchair-using member of the Colorado General Assembly in that legislative body’s 146-year history. “We know that I have my chair, we know that it’s a critical piece of mobility device, and it needs to be repaired as quickly as possible.”

In hopes of making that possible, Ortiz was one of the prime sponsors of the Consumer Right to Repair Powered Wheelchairs, the first Right to Repair law focused on power wheelchairs in the nation. The law allows wheelchair users access to parts, software and manuals so they can repair their own power wheelchairs. Under the law, power wheelchair manufacturers could be cited for an unfair trade practice if they refuse to allow access to parts and manuals.

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