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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30 Days of Thanks Day 20 – My Personal Assistants

I regularly thank the Personal Assistants (PAs) I employ both in person and publicly. Without their efforts and dedication, I would not be able to live independently in the community. They are vital to my ability to function as the professional woman I try to be.

This year has been a rocky year for me when it comes to my PA team. I have faced employee theft, injuries, and illness in my staff. As all managers know, you are only as good as your team and it has been difficult for me to retain a quality team in 2016.

I employ fourteen women as PAs, with six of them filling the majority of my weekly home care shifts and the rest serving as per diem or back up staff. Yesterday I described Consumer Directed Personal Assistance and my role as employer in my self-directed home care program. Rather than a nursing agency scheduling and sending staff to my house, I am responsible for recruiting, training, scheduling and managing my staff. While this does offer more freedom and control, it also comes with great responsibility.

Please don’t misunderstand me – the women I employ are wonderful. They are kind, considerate, compassionate and respectful. Most of the fourteen women on my payroll have been working for me for more than three years. I am grateful to have them and recognize how limited my life would be without their service.

However, gaps in staff make it difficult to function. If my staff are unavailable and I cannot find a fill-in, I am not able to honor commitments to work, volunteer groups, or friends. I miss appointments or meetings if my PA calls out when she is supposed to drive me somewhere. When I can’t find paid staff to assist me, I must ask friends and family to help fulfill my basic needs, and unless you have had to call someone to help you pee or poop, you may not be able to understand how I truly detest having to make that call. Friends and family are kind and helpful, and do not make me feel guilty about having to call. I do that just fine on my own. That’s my issue, not theirs. Fodder for another post.

I have hired, and fired, more PAs since February than I have in the prior two years. I require more assistance now than before my femur fracture, and my established staff did not have the availability to take on my new shifts. I have used multiple online sources to advertise my employment opportunity, and have had good response. But a good response does not always yield good candidates. Since February, I have screened 48 applicants, conducted 23 phone interviews, and 8 in-person interviews. I have hired 4 people, and fired 3.

I am still looking for a PA to work some weekday and weekend shifts, if anyone knows someone looking for part time work in the Albany, NY area! Although the job does require some physical labor (the ideal candidate will be able to lift 50 pounds and will be comfortable standing, bending, squatting and reaching), it is a casual work environment and my staff routinely get to be taste testers for new cookie recipes!

All kidding aside, the job of a PA is very demanding and can be challenging. I am human, and sometimes I have a bad day or a broken leg, and I just don’t want to have to deal with people because I am in pain and frustrated – even though I need a person to be in my space so I can go to the bathroom, get undressed and go to bed. My PAs are also human, and sometimes they have bad days, or sick children, or hospitalized parents, or dying pets. When these things happen (and they have all happened this year), it can be difficult for both me and my PAs to tolerate each other.

But my PAs keep coming to work. They are pleasant and upbeat, even when I complain non-stop about pain. They help me with my physical therapy and stretching, even when I swear and grimace every time my knee moves from extension to flexion. They find creative ways to style my hair to help hide the shorter patch which is still growing back after the nurses cut it out when they removed the central line from my neck. They learn new ways of performing tasks as my body changes and I lose muscle strength and range of motion. They adjust to new routines as I settle into my new home. They are patient when I am delayed returning home because the bus was late to pick me up.

The women I hire are my arms and legs. They make it possible for me to remain active and engaged with my friends, family and colleagues. Without Michelle, Sally B, Stephanie C, Caroline, Ronda, Amie, Tina, Therese, Stephanie M, Sally W, Lisa, Sarah, Esther, and Margaret I would not be able to live an empowered life. I am grateful for all the tasks they perform day in and day out, with diligence and dignity.

I Want To, But…

I want to write about so many recent events and their impact on my life, like the brutal murder of 19 disabled people in Japan and Jerika Bolen’s desire to end her life, but I don’t have the energy to write anything which can compare to what others have already shared.

I want to celebrate my most recent rehabilitation victory (I transferred out of my driver’s seat into my wheelchair ALL BY MYSELF for the first time since January’s femur fracture this past week – three times!), but I am too busy trying to find Personal Assistant (PA) staff to help me get out of bed in the morning to be excited over this accomplishment.

I want to attend meetings, events and parties, but I do not have PAs available or healthy enough to work the hours I require so I can be an active member of my community this week.

I want to make plans to have fun this weekend, but I will be working on Saturday and Sunday to make up for the work time I have missed this week due to lack of PA staff.

I want to watch some of the Democratic National Convention tonight, but I will have to shower instead because I don’t yet know who is helping me get out of bed tomorrow and if they will have time to help me shower in the morning.

I want to be a more productive employee and deliver the quality my employer has come to expect from me, but meeting my basic needs is requiring time and energy which is normally devoted to work.

I want to travel, but I am forced to put those plans on hold because the only bathroom I can use is in my house.

I want, I want, I want.

But, what do I really need?

I need to remember there are people who are willing to help at a moment’s notice, and who come when called so I can get out of bed (thanks Stacey!).

I need to be grateful for my accessible vehicle, when so many are unable to access their community due to lack of transportation.

I need to share the great pieces written by disabled authors and advocates I respect, so others can learn how ableism threatens disabled people and understand the violence disabled people everywhere face.

I need to thank my employers – current and previous – for recognizing my unique needs and granting me the reasonable accommodations which make it possible for me to remain employed full time for twenty years, unlike 80% of disabled people of working age in the United States.

I need to find patience while telling myself this too shall pass, and do my best not to stress over things beyond my control.

And I need to congratulate myself for completing a goal, and posting a new post in the 38 minutes of free time I had alone today.

Not only that, but now I know who is helping me get out of bed tomorrow. Although I’m still going to shower tonight in case something happens…

The Disability Advantage

Two weeks ago, I attended a seminar hosted by a local professional group for women in development. The speaker challenged those of us in the room to consider our personal reputation, or brand. Specifically, she spoke about the importance of building, protecting and repairing our reputation as individuals and also as representatives of the non-profit organizations that employ us.

I have attended other workshops and seminars where participants were encouraged to define, curate and protect their personal brand. Usually when I sit in these sessions my mind starts to wander. I start to question how much of my “brand” is influenced by my passions and beliefs, as opposed to the skills I have developed in response to living with a disability. Many of the qualities which strengthen my personal “brand” have been honed by living with a disability.

For example, I am a creative problem solver. When faced with an obstacle or barrier, I am able to quickly scan any available resources and devise a plan of action. This comes from decades of needing to locate wheelchair accessible entrances and paths, hundreds of nights spent in inaccessible hotel rooms or friend’s houses, and eighteen years of living as a wheelchair user without any roommates.

No curb cut at the corner? I start searching for the closest driveway or backtrack to find a way off the sidewalk. My wheelchair doesn’t fit through the hotel room’s bathroom door? I measure the desk chair (they’re usually on wheels) to see if it will fit. Sure, it’s an extra transfer but at least I will be able to pee without having to go downstairs to the accessible public restroom or fitness center in my pajamas every morning. I mean, I have done that when necessary. When you gotta go, you gotta go.

My disability has also given me good executive functioning skills. These are the skills required to plan, focus, remember and multi-task. When you live with a mobility disability, you are constantly using executive functioning skills – at least I am. I plot out my fluid intake for the entire day before I even get up in the morning. How much I consume is based on when I have Personal Assistant (PA) staff scheduled to help me use the bathroom, and what other tasks I need them to complete. I select my clothes with several factors in mind – the weather, where I will be going, who will be working, and how much time is available to use the bathroom. Of course, this assumes I will have staff to help me use a bathroom which suits my needs. If I do not have a PA or if I cannot use an available bathroom, then the plan will change.

Pee math – the ratio of fluid intake over length of time – is one of the most crucial planning tasks I perform every day, but definitely not the only one. I organize my life based on the PA staff scheduled to work for me. I prefer to have certain PAs perform specific tasks, and some PAs have stronger skill sets in differing areas. Therese, who is wonderful with shopping and laundry, is unable to help me shower. Margaret hates clutter and likes to clean. When she works, I know my linen closet will look very organized by the end of her shift even if I haven’t asked her to do it. Some PAs make excellent travel companions, and there are some I would never ask to accompany me on a trip.

Of course I bring these executive functioning skills with me to my paid employment where they become part of my personal “brand.” I am viewed as a leader by my peers because of my ability to build consensus, juggle multiple tasks and think creatively. Still, I wonder – would I have developed these abilities if they were not required due to life with a disability? Would I seek new ways to approach problems or would I go with the status quo? Would I anticipate and devise contingency plans for every possibility if my disability had not made this a part of everyday life?

My disability, the one thing strangers often assume must be a negative factor in my life, has provided wonderful opportunities to gain crucial skills which make me successful in navigating a world not designed for my needs. These advantages have served me well in my professional and volunteer roles, and are an integral part of my identity and personal “brand.” It has been easy to transfer my life experiences into professional opportunities to further the mission of my employer. I am a stronger employee because of the lessons learned from disability.

What unique life experiences have shaped your personal “brand?” How have you taken life lessons and used them to further your career? I’d love to hear your thoughts in the comments!

Image of a lightbulb floating against a blue sky and clouds. There is a tree and birds flying inside the bulb.

Conservation of Energy

When I was younger, I thought I would grow up to be a music therapist and structured my high school course work to match my projected career path. I took only the minimum required science courses – earth science, biology and chemistry – and not physics. I stayed away from physics because I could never remember all the formulas and equations. Density, momentum, power, work and energy – my brain hated this math dressed up as science. Even now, the only physics concept I relate to is the law of conservation of energy. This law states energy cannot be created nor destroyed, merely transformed from one form to another.

I relate to the law of conservation of energy because I live my life juggling energy. I talked about this before in this post when I wrote about Christine Miserandino’s spoon theory and how it applies to my life. I have “good energy” days and “bad energy” days. Unfortunately, I cannot predict when either will occur. Sometimes I will have multiple meetings scheduled for work, but I wake up and discover it is a bad energy day. When this happens, I know I must conserve what little energy I have so I can accomplish the most and still have energy to get home, go to the bathroom and get to bed. Sometimes I will have nothing planned, but I wake up and feel full of energy. When this happens, I try to accomplish as much as possible without overdoing it and accidentally causing the next day to be a bad energy day. Since my femur fracture in January the energy required to complete daily tasks has increased, forcing me to juggle enjoyable pursuits such as writing, with required activities, such as employment, with creativity.

Lately, my energy level has been more depleted because I am once again struggling to maintain adequate Personal Assistant (PA) staffing. I’ve written before about the importance of good PA staff and it turned out to be one of my most popular posts. This tells me I am not alone in my struggle. If you haven’t read that post about how my life is different when personal needs are met, please take a moment to go read it now. I’ll wait. Really – go read it.

In physics, objects have potential energy. I remember it as the stored energy of an object in relation to another object. I know, that definition is too simplistic, but remember I didn’t do physics. A coiled spring has potential energy, as does the string of a bow which has been pulled back by an archer. Potential energy is influenced by force. In my case, my body has potential energy and my PA’s impact the level of potential energy each day through the force of their work.

Physicists describe work as the force required to move an object. There is a formula to calculate work but as I’ve already explained, I am bad with formulas. What I do know is work transfers energy from one object to another. This I understand, because when I have adequate PA staffing, their work creates energy in my body. When my PA shows up on time in the morning to help me get out of bed, go to the bathroom, shower and get dressed, I have more energy. When my PA comes as scheduled to help prepare my meals and perform basic housekeeping, I have more energy to pursue those activities which matter to me (employment, writing, crochet, and more) because I have conserved the energy I would have otherwise spent on other tasks. Likewise, when a PA is late for a shift or calls out at the last minute, I am forced to waste expend energy on locating a replacement so my basic needs are met. And when the PA who is scheduled to assist me at the therapeutic pool with my outpatient physical therapy has car trouble or difficulty with childcare, I am unable to engage in exercise which helps build strength crucial to my ongoing recuperation.

Other outside forces impact my energy level. I have more energy when I am warm than when I am cold. The physicists might try to apply some law to this (thermodynamics?). To me, it’s as simple as cold causes pain and pain makes movement more difficult. I also rely on mechanical and electrical energy frequently – my power wheelchair, my electric bed, the transfer seat base in my van.

My life is a constant struggle for energy. Energy is a precious commodity which must be conserved and managed in order for me to engage in my community. When the force and work required to maintain my energy is not consistent, I go into survival mode. I stop doing the activities which bring me joy so I can preserve the energy required to get me through basic daily tasks. Over time, this drain on my energy creates stress on my mental and physical health.

Suffice it to say – I’m still recruiting new staff. Maybe I need to change the job title to “Energy Conservation Technician” instead of “Personal Assistant” to more accurately reflect the true value of the work.