The mood was festive at the Independent Home Care, Inc, Gratitude Mixer in the Newburgh Armory last week. Round banquet tables had been set out on the hardwood floor, and the aromas of cooked food mingled with the music.
A group of near 90 homecare workers and their clients, referred to in industry parlance as Personal Assistants (PAs) and Consumers respectively, had gathered together to bear witness to this first annual event.
Despite the positivity, attendees had also come to draw moral support for one another. Their situation in life is uniquely strained.
A representative Consumer here at the mixer, 54-year-old Andrew Weyant, lives with quadriplegia.
“I’m moving my arm a little, but I can’t move my fingers,” said Weyant, explaining that the condition of quadriplegia need not be total. “All four limbs were affected by a spinal-cord injury,” he said. He was 15 when the injury occurred.
Without assistance, Weyant is helpless to perform the simple tasks taken for granted by the able-bodied, like getting out of bed in the morning.
“A Personal Assistant is someone who comes in every day, seven days a week, to get me up, out of bed, stretch my arms, wash my face,” says Weyant. “To help me get my teeth and hair. And get me in my wheelchair, to help me with my activities of daily living so I can function as a normal person, or somewhat normal.”
Weyant said he was grateful “for everybody that comes in, day in and day out, through the rain, through the snow, in the cold weather, to come help me get up out of bed.” –
Weyant has a wry sense of humor. He acknowledged the shift to a more intellectual life had become necessary.
“Yeah, I got no choice, right? When I was a kid before I got hurt I used to do everything with my hands. Tearing apart my bicycle, fixing and cleaning it up and putting it back together. Mowing lawns. Hammers and nails. That stopped when I was 15, and I learned to do things with my brain and my mouth.”
Weyant owns his own financial planning business, volunteers his time, is an amateur radio operator, is past board president of Independent Living and current board member of Independent Homecare Independent Living Inc. [sister corporations].
If there is one thing Weyant is sure of, it’s “I don’t want to be in a nursing home. I know that I want to live comfortably in my home and within the community.”
Making your own choices
Laura Caldwell is director of operations and events for Consumer Directed Action of New York, a statewide advocacy organization based in Albany.
“I’ve been with the Organization for twelve years,” said Caldwell. “We represent organizations similar to Independent Living and Independent Homecare. And our mission is to build self-directed power, which means to take action that will highlight and strengthen the consumer-directed personal assistance program.”
The program, a form of Medicaid homecare, allows a person to make their own choices about how their care is received.
“That means they choose who they’re going to hire to work for them,” explained Caldwell. “In many cases, people hire a relative or a friend, but people also form relationships through advertising in the community. And it’s basically an opportunity for people who have a disability.”
Before the independent living movement if the Sixties and Seventies, Caldwell said, people with disabilities were basically warehoused.
“The independent-living movement was, I’m tired of being really limited in what I can do and I’m tired of being talked down to by the medical establishment, tired of doctors telling me you have to do this a certain way and you can’t live on your own, have a job in the community. You can’t have romantic relationships.”
It was really about people protesting and making themselves publicly visibly out and about in the community.
“The idea that people who are disabled need to be looked after all the time or warehoused, it’s really about the dignity of risk,” concluded Caldwell. “If I want to make the wrong choice, or I want to do something that you personally think is stupid, I should be able to take that risk, regardless of whether or not I have a disability or I need homecare.”
The freedom to make mistakes and to regret them is essential to the entire concept of self-determination by a morally responsible human. Andy Weyant is that dramatic example of the journey from terrible mistake to philosophical redemption.
“I had an accident over 38 years ago,” he said. “I made a stupid mistake when I was a kid. We went into a house that we shouldn’t have been in. I was in there with a couple other folks, kids from my class. And whoever was looking after the house came by. We didn’t want to get caught in there. So I jumped out a window. I landed on my head and broke my neck. It certainly it doesn’t define who I am today.”
Our care cannot wait!
Everyone was gathered in the Newburgh Armory to hear the New York Caring Majority speak.
A coalition of advocacy groups aiming to represent the interests of seniors, people with disabilities, family caregivers, and domestic and homecare workers from all across the state is engaged in a struggle to increase the base wages of homecare workers.
Lead organizer for New York Caring Majority Julie Solow spoke from the stage. Her voice was carried through two P.A. speakers always on the verge of feeding back.
Solow tapped a bottomless well of enthusiasm.
“So we thought it would be cool to teach you a couple of chants,” said Solow, “that we have been chanting for the fair-pay-for-homecare campaign. Everybody ready? So I’m gonna say ‘Our care cannot wait!’ and then you’ll say ‘Do the right thing, New York State.’ That was a rallying cry, and it still is for us in the fair-pay-for-homecare campaign.”
Solow said that the pandemic shined an unprecedented spotlight on long-term care. As the result of the New York Caring Majority’s efforts in Albany, governor Kathy Hochul announced a $7.7-billion investment to increase wages for homecare workers in April 2022. This proposed infusion had the effect of increasing pay for homecare workers by $3 an hour above minimum wage.
By 2026, the minimum wage in the state will be raised to $16 for upstate areas, including Ulster County and the Capital District. (In NYC and downstate areas, it will be a dollar higher.) As a result of the governor’s additional funds, homecare workers will receive $18.65 an hour upstate.
Solow said it wasn’t nearly enough.
“I think that when we’ve heard that news, and had been literally living at the Capitol fighting for true fair pay, we felt a little crushed,” she said. “But this is forward movement, and we have to also embrace the fact that our advocacy … is making a difference. We’re seeing pay raises for homecare workers because of this work.”
The coalition is aiming for 150 percent of the statewide minimum wage, or $25.50 an hour as a compensation that reflects the dignity and difficulty of the work and that these essential workers for those who can’t live independent lives without them deserve.
In January of this year, state senator Rachel May sponsored a bill to enact the Fair Pay for Home Care, proposing to increase the base wage for home care aides by j that amount.
Implanted electrodes
Over at a garishly festive backdrop of balloons and sparkle, the stage was set for guests to immortalize the moment, and to record a video testimony if they so desired of how important their personal assistants were to their quality of life.
A man pushed in a wheelchair, Steve Blackman, bore an uncanny resemblance to Kurt Vonnegut, famous American wit no longer among us whom Blackman had never read. So it goes.
“I’ve been taking care of Steve for about 16 years. He’s like family at this point,” said Rose Toscano, Blackman’s P.A.
Blackman, born with Tourette’s syndrome, finds himself in a wheelchair because he fell and broke his hip, the consequence of an unexpected tic. While many people are familiar with the Tourette’s effect of sudden, unintentional shouting, Blackman’s case is much more serious.
“He was on Medical Incredible,” said Toscano. “He actually has DBS … deep brain stimulation. Because his Tourette’s was so bad.”
Blackman lifted his collar to show a pager-sized box implanted under the skin above his pectoral muscle. “I have 16 electrodes in my brain,” he said. This admission officially makes him a cyborg. Implanted electrodes disrupt the unwieldy electrical signals in his brain which are behind the worst effects of his Tourette’s.
Blackman is firmly on the side of advocates for getting Toscano a higher wage. Currently she works four eight-hour shifts a week for him while Medicaid pays for 24-hour-a-day care.
It’s just not enough. “During Covid,” said Toscano, “a lot of people quit their jobs. The pay was great for unemployment. So many people were like, it’s $600 more a week. It was almost like an encouragement to quit your job. I stayed. Because how do you leave your clients? How do you walk out when you’re home healthy?”
Like Weyant, Blackman’s primary goal is to stay out of the nursing home.
“Of course. Being in your own bed!” said Blackman. “And in a nursing home you can’t have your dog. She’s a Labrador retriever mix.”
More than minimum wage
For now, the future of increased pay remains uncertain. Caring Majority maintains that it had to fight against a proposed rollback to the wage increase out of the governor’s office.
A Caring Majority worker who agreed to speak on background conjectured that when it became clear the minimum wage would rise that fiscal conservatives encouraged the governor to bring the wages of homecare workers back in line with the new minimum.
The effort’s supporters were able successfully to maintain that homecare workers needed to be paid above minimum wage.
Weyant expressed gratitude for the efforts of senate majority leader Andrea Stewart-Cousins, and invited all would-be supporters to sign on to New York’s Caring Majority, ‘Fair Pay for Home Care’ petition as well as join their “500 Telephone Calls to the Governor Drive.”
Join the family! 
