Strengthening My Advocacy Muscles

I have never considered myself a political activist. Sure, I have advocated for causes I believe in and participated in legislative visits and meetings with my elected officials. But I have not attended rallies or marches. I have never chained myself to an escalator or thrown myself in front of inaccessible buses, like other disabled activists I admire and respect.

However, because of my job and my situation as a Consumer who uses Consumer Directed Personal Assistance to remain independent in the community, I am in a unique position to speak to the importance of adequate wages for home care workers. Last Tuesday, Bryan O’Malley, the Executive Director of the Consumer Directed Personal Assistance Association of New York State, and I spoke about this issue with Liz Benjamin on Capital Tonight, a political news program broadcast statewide in New York on Time Warner Cable. You can watch the interview by clicking on this link.

Then, yesterday I did something I have never done. I gave testimony at the New York State Assembly Hearing on Home Care Workforce in Albany. The hearing, which was held by the Assembly Committees on Health, Labor, Aging and the Task Force on People with Disabilities, brought together people from licensed home care agencies, state and county offices of health and aging, managed long term care plans, fiscal intermediaries, unions, home care workers and Consumers. Over thirty people spoke at the hearing, which went on for more than ten hours.

I was the first Consumer using home care called to speak at yesterday’s hearing (there was a hearing in New York City last week). Some of my friends have asked me  about my remarks, and since they will now be part of the public record, I am happy to share them here. You can find them below.

As I sat and listened to the many speakers yesterday, I noticed some consistency among the comments:

  • Recruiting good home care staff is a challenge around the state, particularly in rural areas where the distance between Consumers may be 15-20 miles.
  • Many elected officials still don’t have a clear understanding of Consumer Directed Personal Assistance, and why it is a vital option for many people who rely on home care.
  • When home care agencies increased wages for home care workers, they were able to recruit and retain staff. But, since most long term care is paid for by Medicaid, without the state increasing funding, agencies and fiscal intermediaries are not able to support higher wages.

What next? I will continue to work with my employer and with other advocates to make sure the Consumer voice is heard. We must ensure that legislators understand when they are talking about this matter, they are talking about real people, with real families and jobs, with real needs. I raise my voice because I know I have peers who may not be in a position to be able to speak out.

For those who are interested in my testimony, here is what I said yesterday at the hearing:

My name is Denise DiNoto, and I live in Waterford. For the past 10 years, I have managed my home care services as a Consumer through the Consumer Directed Personal Assistance program. I am here today because of the difficulties I face ensuring I have adequate staff.

As a Consumer, I get to be the “CEO of me,” in charge of personnel. I recruit, train, supervise and manage the staff I hire to be my Personal Assistants, or PAs. As their employer, I am given the maximum amount of independence, allowing me to live independently. Because I have PAs, I am able to work full time, volunteer for causes I believe in, and serve my community as President of my Rotary Club.

My PAs are dedicated, kind and caring workers. They serve as my arms and legs, helping me with every activity of daily living. From 6 AM every day when the first one enters my house until 9:30 PM when the last one leaves, they provide vital services such as getting me in and out of bed, on and off the toilet, showering, dressing, and grooming. They prepare my food, do my laundry and grocery shopping. They open my medications, clean and change my bi-pap supplies, and help me perform daily range of motion and exercises.

Recruiting and retaining staff has become increasingly difficult since I started using Consumer Directed Personal Assistance ten years ago. One of the key reasons for this is the low wage I am able to offer my staff. Some of my PAs have been employed with me for ten years, and have only seen one raise during that time. That is not because they do not deserve a raise. It is because the Medicaid reimbursement to my Fiscal Intermediary has not permitted a raise. Consumer Directed Personal Assistance is a Medicaid funded program, so if the funding to Fiscal Intermediaries, the agencies we must use to help us pay our employees, is not adequate, the wage we pay our Personal Assistants is not going to be attractive.

The job of a Personal Assistant is deeply intimate, and is not for everyone. I have been forced to retain workers who showed up consistently, but were not quality workers, simply because having someone was better than not having anyone. This action brought about disastrous results last year when one of my former PAs dropped me during a transfer because she did not listen to me or follow my instructions. I fractured my femur, which required a lengthy surgery, and then spent a total of 4 weeks in the hospital and rehabilitation. I have been continuously recruiting staff since returning home last February.

At any time, I usually employ 14 PAs to cover the 70 hours of care I am authorized to receive each week. Of these, 6 are my primary workers, with the rest being back up or “emergency” staff. In just the past year, I have had 6 PAs leave my employment, and have been continually recruiting new staff since February 2016. When I asked my former PAs why they left, the number one reason was that they were not earning enough money.

Without my staff, I would not be able to live in my house. I would not be able to work. I would not be active in my community. I would not survive.

I respect the work performed by my staff, and home care workers across our state. I would like New York State to respect that work, by allowing Consumers like me to pay an adequate wage. Then, we can more effectively recruit and retain quality staff, keeping us in our communities and homes where we belong.

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Redefining Disability Challenge – Question 40

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fortieth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Are you involved in any political or social activities related to having a disability? This could be anything from an advocacy group to an informal social gathering to participation in adaptive sports.

I have always been an active advocate for disability rights. I have spoken publicly about disability issues since I was a child, and continue to remain engaged as an adult.

Sadly, one of the ways I remain engaged is overlooked by the majority of Americans with disabilities – the power to vote. In my mind, voting is one of the most important ways we can become involved in the political process. As soon as I was old enough to vote, I registered with the Board of Elections. I vote each year, not just for large national elections.

Because of my current job with a disability organization, I have frequent contact with local elected representatives. I attend rallies and legislative action days with the Consumer Directed Personal Asssistance Association of NYS (CDPAANYS), the statewide membership association for agencies that assist people who use consumer directed personal assistance for their homecare. Through my involvement with CDPAANYS, I have met other advocates from across the state and developed a stronger peer support network.

I encourage other people with disabilities to become involved in advocacy using whatever methods feel comfortable to them. Some people like to write letters or make phone calls. Others like to go visit their elected officials for meetings. A few activists are willing to be arrested to make a political statement.

When you become involved in advocacy, you make it easier for your elected officials to know how issues impact real people – their constituents and people who vote. I know the man who represents my district in the New York State Assembly. I have been to his office at least once a year since he was elected and see him frequently at events. I send him emails when I notice he has supported legislation important to people with disabilities. He has also reached out to me by email to notify me when pieces of legislation have passed. This relationship would not be possible if I were not regularly engaged in advocacy activities.

In addition to my advocacy efforts through my employer, I am involved in activities at a local independent living center, the Independent Living Center of the Hudson Valley (ILCHV). I have participted in two writing classes hosted by the ILCHV. Not only was I able to practice memoir writing and photojournalism, but I made new friends and developed a deeper understanding of discrimination experienced by those who live with invisible disabilities. I am a stronger advocate due to these relationships.

Nothing makes an impact like a personal story. Hearing an individual’s experience allows us to personalize an issue which may seem abstract. Sure, it sounds great to say all sidewalks should have curb cuts. But when a person tells you they can’t get off their block because the sidewalk does not have a curb cut, the issue changes dimension.

I speak out whenever I can because I am in a position to do so. When I do, I always remember I am exercising my rights because others paved the way for me to do so. I advocate for others who are unable to because keeping quiet would be a wasted opportunity.