Tell us a bit about yourself, and your role as a domestic employer:
My name is Kendra Scalia and I am a proud disabled woman currently living in Newburgh, New York. I am a disability and healthcare policy analyst. Much of my work through my consulting business focuses on the impact of government laws and regulations on the ability of disabled people to access and maintain consumer-directed services, and that extends to the health of the home care worker industry.
I use the Consumer Directed Personal Assistance Program (CDPA), which is a Medicaid-funded program that was first designed by and for disabled New Yorkers. The program permits people with disabilities to directly hire, schedule and supervise personal assistants. The program has a huge impact on my life and independence— it gives me the right to live my life as I choose. Personal assistants come when I need them, and I have the ability to change my schedule as needed, for example to sleep in occasionally, or go out to eat. If my employee needs to call out sick, I can immediately contact another worker and ask them to cover the shift.
Personal assistants help me perform all of my personal care tasks and help me to connect with my community so I can work, volunteer, be a daughter, a sister, an aunt and a friend. I’ve hired and supervised my own personal assistants for 22 years. My freedom is bound to the dignity of domestic workers. We are interdependent on each other’s successes and ability to thrive.
How did you get involved with Hand in Hand?
When Hand in Hand was first formed, I was living and working in the San Francisco Bay Area. A disability advocate invited me to a meeting with a coalition of domestic workers and domestic employers. At that time, I was paying for my care out of pocket and wanted to ensure the power dynamic in my own household was one I believed to be fair – as it was the first time I was in full control of wages, benefits and contracts. At the first meeting I attended, the group was a diverse and dedicated to honestly listening to one another to find common ground in our parallel struggles. Rather than pushing and pulling each other to compromise, workers and employers were hand in hand chanting for the same vital changes. I was energized! I participated in living room conversations to grow the movement within the disability community and sat at the table as we developed what would eventually become the California Domestic Worker Bill of Rights, which was passed in 2013.
Years later, I reconnected with Hand in Hand after moving to the New York Hudson Valley.
What aspect of Hand in Hand’s work are you involved in right now?
Right now, through the New York Caring Majority campaign, I am fighting against Medicaid cuts and to transform our care economy so it works for employer and employee alike. In April, in the middle of the coronavirus pandemic, Governor Cuomo cut 2 billion dollars out of the Medicaid budget, eliminated eligibility for home care services for those with 1 or 2 activities of daily living (ADL) needs, and created additional barriers for those first applying to Medicaid by instituting a look-back penalty*.
The eligibility cut passed in New York State in April 2020 that requires more than two ADLs is extremely dangerous. ADL’s are activities related to personal care like showering, getting in or out of bed, dressing, using the toilet, and eating. But individuals need homecare assistance for more than these basic tasks. Instrumental activities of daily living (IADLs) are related to independent living needs such as preparing meals, managing money, shopping, performing housework, mail correspondence and using a telephone. These care activities are just as vital to safety and independence.
Without access to home care services, some people will turn to nursing homes— not because they want to, but because they have no other choice to stay safe at home. It isn’t cost effective; it isn’t fair; and it isn’t right.
Unfortunately nursing homes are common places for people like myself to be sent away to when home care programs (like CDPA) are not adequately funded, or eligibility cuts are implemented. As we know, 40% of COVID-19 deaths have been linked to nursing homes. For those of us using the Consumer Directed Personal Assistance Program we’ve struggled through COVID-19. Our homecare workers are not provided personal protective equipment (PPE) such as gloves or masks, and many of them have chosen not to work in order to keep themselves and their families safe. This puts all of us in a very difficult situation— my employees are forced to go without a paycheck, and CDPA consumers like myself can’t afford to purchase PPE out of pocket. This risks our health when an employee does come to work.
“For me, contracting COVID would be a death sentence. It’s wrong that my life is literally jeopardized so I can use the restroom, and get dressed each day, while a private corporation continues to receive funds on my behalf. Those funds should be used to address my care needs, not ballooning corporate executive salaries.”
As I recently spoke about at a press conference in support of the New York State Essential Care Act, for me, contracting COVID would be a death sentence. It’s wrong that my life is literally jeopardized so I can use the restroom, and get dressed each day, while a private corporation continues to receive funds on my behalf. Those funds should be used to address my care needs, not ballooning corporate executive salaries. Managed long-term care plans should, at minimum, be using profits to ensure the safety of plan members like myself by providing PPE to home care workers.
While the New York State Governor and Legislature continues to fail people with disabilities, seniors and home care workers, by refusing to address our needs— the New York Caring Majority continues to organize, build our base of supporters, and is looking forward to taking our fight to the polls in November. We know the truth: These cuts are life threatening for both disabled and seniors individuals and home care workers.
*A Medicaid lookback penalty is a period of time new applicants who are otherwise eligible must wait before receiving benefits. The penalty period is based on assets held by the applicant in the years prior to applying for Medicaid. This typically penalizes workers who become disabled and their family members, as assets are not permitted to be given away in order to qualify for Medicaid.
From your perspective, why is it important for everyone to take action to transform our care economy?
Every single person alive today has relied on care in some form. From birth and continuing through our life journey, we look to care provided by our guardians, siblings, friends, extended family, spouse and children. We recognize the importance of these relationships in our everyday lives. We nurture them and support one another to ensure they’re there when we need to call on them. But when care becomes a long-term need, we rely on nannies, housekeepers, and home care workers for the very same care tasks. Our politicians choose to devalue this work year after year by cutting wages and benefits, forcing home care workers out of the industry. Our nation is in the midst of a home care worker shortage crisis. The worst of it is expected to hit in 2025. That means, when you finally need long-term care (and you or a loved one WILL if you’re lucky to live long enough) no one will be there for you. Transforming our care economy today is the only real insurance policy for your future long-term care needs. I encourage anyone not already involved with Hand in Hand, to sign up to learn more and get involved.
“Transforming our care economy today is the only real insurance policy for your future long-term care needs.”