What I’ve learned being reliant on a caregiver

Opinion by 

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.

 To Read More, Click Here

Social Security Proposes Change To SSI Benefits

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.

“We have historically included in-kind receipt of food in our consideration because food assistance helps people meet their basic needs. However, the complexities of our current food (in-kind support and maintenance) policies may outweigh their utility,” the Social Security Administration wrote in its proposal. “Moreover, the current (in-kind support and maintenance) policy may insert barriers into what would otherwise be an innocuous receipt of a meal or food from an individual’s friends or family. The current requirements for reporting in-kind food receipts could discourage SSI applicants and recipients from receiving an often informal but important form of help.”

Read More By Clicking Here

Would cameras make group homes for disabled people safer? Debate rages over privacy

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.

States Struggle To Curb Fake Emotional Support Animals

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.

To Read More, Click Here

How California’s emergency plans fail disabled communities

by Astra Lincon, High Country News/hcnn.org, January 23, 2023

Kelley Coleman was vacationing in Santa Barbara, California, when the evacuation order came. It was New Year’s week, and Kelley’s two sons, third and fifth graders in Los Angeles’ Studio City neighborhood, were enjoying the last of their school holidays. Aaron, 9, Coleman’s youngest — a boisterous, enthusiastic child — relished splashing around for hours in the Pacific’s briny, biting cold.

Rain was forecast that week, not unusual for January on that part of California’s central coast. For days, it drizzled. Then, late on the last day of their vacation, Coleman’s cellphone buzzed. It was an emergency notification: Heavier rains were coming, and with them possible flash floods, falling trees and landslides capable of tearing homes from their foundations. Residents across Santa Barbara County were told to evacuate.

Immediately, Coleman called the nearest pharmacist. If they were evacuated, she thought, how would they get Aaron his medication

Aaron is a medically complex child. In addition to taking a daily medication for epilepsy, he has a variety of sensory impairments and relies on a feeding tube. Coleman’s life is built around rituals of readiness: She keeps go-bags in the car, at school and at a neighbor’s house with backup tubes, formula and replacement parts for the port in Aaron’s stomach. But she cannot keep backup medication; the federal Food and Drug Administration’s policies for controlled substances prevent people from getting refills until their prescriptions have nearly run out. Coleman had refilled Aaron’s medicine just days ago, but the bottle was back home in Studio City.

Aaron had just two days’ worth of medication left, and the rains were falling harder.

To Read More, Click Here

NJ riders with disabilities lament Access Link’s delays, lost drivers. NJ Transit promises change

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.

To Read More, Click Here

California’s power outages are a life-and-death issue

A perspective on the impacts of storms for people with disabilities by Alice Wong

High Country News/hcn.org, January 19, 2023

The terms atmospheric river and bomb cyclone were not in my vocabulary until recently. During the first two weeks of 2023, however, the San Francisco Bay Area was deluged with a series of storms. I am a disabled person who depends on power to live. When I came home after four weeks in the ICU last summer, I was tethered to a feeding machine that pumps food into my stomach, as well as to a ventilator that’s attached to a hole in my throat, among numerous other devices. The stakes for potential harm during a power outage have exponentially increased. My anxiety, vulnerability and fear are real.

Jan. 3, 2023, 10:44 p.m.: Texted my caregivers on what to do if a power outage happens while I am in bed tomorrow night. Air mattress will deflate, and I will immediately need to be transferred into my wheelchair. I will need to use my backup electric batteries for medical devices such as my suction machine, since I need to suction hourly every day.

Jan. 4, 10 a.m.: Mentally calculating how much battery life some of my machines need before needing to use my backup electric battery. My other devices do not have a built-in battery.

1 p.m.: Bookmarked the link to Pacific Gas & Electric’s (PG&E) Outage Center, so I can look up all the outages by location and report one if it happens in my neighborhood.

1:30 p.m.: Asked my father to make sure my backup electric batteries are fully charged.

To Read More, Click Here

‘Until it affects you’: Wheelchair users still battle to make NJ more accessible

by Olivia Liu,  Asbury Park Press, January 3, 2023

Stanley Soden of Long Branch was heading down Lowden Court to pick up groceries for himself and two neighbors in his apartment building. Despite the sidewalks that line Monmouth Medical Center on his right, Soden, who uses a motorized wheelchair, was riding on the street next to cars and trucks.

The reason? For Soden, sidewalks can be less safe than streets. At a few curb cuts leading down the sidewalk along Lowden Court, puddles and potholes have the ability to tip his wheelchair.

That is one of the many barriers wheelchair users face to fully participating in the communities where they live.

To Read More, Click Here

‘Right to Repair’ Bill Aims to Empower Colorado Power Wheelchair Users

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.

Read more by clicking here



PF Trustees Elected During Annual Membership Meeting

Project Freedom Inc. recently held its annual membership meeting as required by its by-laws.  Tracee Battis, President and Executive Director of Project Freedom Inc., gave her annual report to the assembled members providing an update on current and future projects.

The meeting then turned to the election of Trustees to the Board of Trustees.  Gary Backinoff, Chair of the Nominating Committee, presented a slate of nominees.  The floor was then opened up for additional nominations from the membership at large.  No other nominations were made, the nomination process was closed, and a vote on the slate was ordered. 

Norman A. Smith, Vice President and Associate Executive Director, “cast the ballot” in favor of the slate and electing to the Board of Trustees:

Gary Backinoff
Kelly Borden-Joye,
Robert Buda, Jr.
Jim Colitsas
Mary Geopfhert
Tim Lutz
Matt Markovich
Norman Smith
Daniel Surtz
Tim Wolf

The meeting was then adjourned.