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.

Adventures in Hiring

Since coming home from the hospital, most of my time has been consumed by physical therapy and hiring new Personal Assistance (PA) staff. I terminated the employee who dropped me in January. leaving me with a huge vacancy in my PA schedule. In addition, I am home-bound now (at least for the next six weeks) and require assistance during the day. During my hospitalization, the staff and other patients often asked me about the process I use to recruit and hire new staff. This is my routine. It may not work best for you or someone you know, but I have found it to be successful.

The first thing I always tell people who are new to hiring PAs is to remember you are seeking an employee. You are not hiring a friend. You are not looking for someone to take control of your life. You are hiring an employee who will assist you in living the best life you can live. You may develop a friendly relationship, but at the end of the day that PA is paid to be your staff. Treat your role as an employer seriously, and learn your responsibilities. This may include learning some basic information about how to write a job posting, how to conduct an interview, what questions are illegal to ask, or when to make the job offer.

One of the best resources I have found for recruiting new staff is Craigslist. I place my job posting, and within an hour I have applicants sending me emails expressing their interest. Granted, not every applicant is worth an interview. But for sheer volume of potential employees, I find Craigslist to be the most economical.

Last year, on the advice of peers, I began using an online screening survey to help weed out select potential candidates for interviews. This brief survey includes questions about prior experience and the qualities I deem essential for employment. Most applicants are willing to complete the survey and the results have made my recruiting and hiring efforts less taxing. The survey is the best tool I’ve used to help me identify candidates worthy of a phone interview.

The phone interview is important for many reasons. First, I schedule the interview with the candidate so they are required to call me at a set time. If a candidate cannot keep an appointment for a phone interview, they will never be able to make a scheduled shift on time. Of the candidates I invite to participate in a phone interview, approximately 50% fail to call at the scheduled time. Second, the phone interview helps me eliminate people who are not good candidates for in-person interviews. I can ask questions about any of the candidate’s survey responses which may have caused concern or seemed not quite truthful. I am surprised at how many people say one thing in the survey but then contradict themselves on the phone. And third, sometimes the candidates simply are not interested in pursuing the job after learning more during the phone interview. I would rather eliminate someone who knows my job is not the right employment opportunity for them at this stage. It saves time and energy for both of us to not have them come for an in-person interview for a job they know is not a good fit.

Last week, I received eighteen responses to my job posting in just three days. Seven candidates completed the online survey. I held two phone interviews (the third person never called). I knew after the phone interviews there was really only one person I wanted to interview in person. She came to my house on Saturday for an interview. After telling her more about the job, and my expectations for an employee, I asked her questions. In addition to saying all the right answers, she had an upbeat personality and glowing references. Her questions for me showed maturity and understanding. Thankfully, she accepted the job offer and will start this week.

One of my most popular posts last year was this post about the importance of meeting personal needs. It takes a carefully curated team of paid PA staff, family and friends to maintain my independent lifestyle. Since returning home from the hospital, my support network has gone above and beyond expectations – assisting me with personal care, doing laundry, bringing me meals, doing my errands and grocery shopping. Their help allowed me the time required to successfully recruit and hire new staff without worrying about how to meet my basic needs.

With my personal care needs met, I now feel like I can finally begin the process of adjusting to my new “normal” at home. Having adequate staff means I can complete my home exercise program three times each day as recommended. I can drink more fluids since I have more consistent assistance using the bathroom during the day. I am able to focus more on recovery than the tasks required just to stay alive.

Current status: Sitting in a sunbeam in my dining room, preparing to write thank you notes, drinking another cup of coffee because I can go pee later!

Vacation (again!)

This is the second time I’ve posted this (sorry to those of you who are getting another email!). I am attempting to learn how to blog using my new tablet. I haven’t mastered the WordPress app, so this post accidentally went up earlier this morning before I had finished it. Now that I’ve completed it, I’m sharing again. It may not look the way I want it to, but I will keep practicing. I plan to devote many hours to writing this week and I will be much better come Friday. Here’s the post, as I intended it to read:

I am on vacation this week. This is the first time in fifteen years I have taken a week off without anything planned. For years my only vacation involved taking a week during the summer to volunteer at the Ms. Wheelchair America Pageant. While I enjoyed my Ms. Wheelchair adventures, these weeks were not restorative vacations. I have taken vacation weeks off to play tour guide to visitors from Australia and while full of fun, these weeks were spent on the go. I have an amazing vacation planned for next year which will be exciting but not restful. I have difficulty making concessions for my disability, but the reality is my body has been begging for a break for months and I am finally giving in.

My sister Caroline has graciously opened her house to me and I am spending the next seven days in my hometown with family and friends. Her house, which we jokingly call “the inn on the hill,” was purposely designed and built to be accessible. Caroline and Paul, her husband, wanted me to have a place to stay when I visited my hometown. My parents’ house, while visitable, is not accessible. When Caroline and Paul began to draw up plans for their current house, they included features such as a ramp, elevated toilets, a roll in shower on the ground floor, lever handle sets on doors, wider doorways and pedastal sinks. Although Caroline and Paul don’t need these accommodations themselves, they have built a house which will suit their needs for the rest of their lives if they choose to age in place.

Caroline acts as my personal assistant when I stay with her, which means this vacation is not just a break from my paid job but is also a much needed vacation from my role as the CEO of me. That is how I describe my job as manager of my own personal care needs. Using a Consumer Directed model means my life is a business and as the CEO of me, I am responsible for for personnel. I recruit, train, manage, and supervise my staff. Every day. All year. For the rest of my life. Without a break.

Except when I come to Caroline’s house. Here, I don’t have to worry about how I will get out of bed if someone calls in sick. I don’t have to worry about whether or not I can have an extra cup of tea because I know she will be available to help me go to the bathroom at any time. Sure, she has a life and a job and is not at my beck and call every moment of the day. But while I am here I don’t have to make contingency plans for what to do in case one of my workers can’t make her scheduled shift.

As I’ve written before, until you rely on another person for your basic needs you probably never think about how much coordination is required to complete your daily routine. I’m not complaining about this responsibility. I am grateful to live in a state which permits me to control my life. I get to chose who comes into my house, who helps me shower, who makes my meals and who has to help me get my underwear in the right place when I get dressed. But even though I enjoy being the CEO of me – I am appreciative of the gift of a few days off. Even CEO’s need a vacation, right?

So this week I will get rest, or at least as much rest as can be obtained in the midst of two dogs, a puppy and two cats. I will read, write and crochet in front of Caroline and Paul’s fireplace. I will play with my new toys and maybe even sample some new blog layouts and designs. My regular staff will get a week of vacation from me which they probably need too.

When I return home next week, the CEO in me will be ready to resume control. For this week though, she’s out of office.

The words "30 days of thanks" in cursive writing on a green square.

30 Days of Thanks Day 1 – My Amazing Personal Assistants

Take a moment and think about your weekday morning routine. It probably starts with the alarm clock interrupting an amazing dream – you know, the one where Hugh Jackman comes to take you to a secluded island in the tropics. Oh, wait – that’s MY morning. Sorry.

After hitting the alarm, you may stretch in bed or maybe you sit and stretch before standing. Some people may make coffee the first order of business, others may go to the bathroom. You shower, perhaps shave, brush your teeth and get dressed.

Now imagine how your morning would be different if you needed assistance from someone else to perform all of those personal care tasks. My morning starts with the alarm clock but rather than getting up out of bed I wait. At 6:00 AM, my Personal Assistant (PA) comes into my house. I listen to her make my coffee – I’ve trained them all so they know not to come into my bedroom first thing in the morning without a cup of coffee in their hand. She turns off my wheelchair charger, moves the chair next to my bed, helps me sit up and hands me my glasses. She helps me transfer from the bed to my wheelchair, then onto the toilet. While I take care of business, she gets my clothes ready and makes the lunch I will take with me to work. When I’m done she helps me back to my wheelchair then into the shower. She washes my hair, hands me my face wash, and helps me scrub my back and feet. When I am done, she helps me dry off and transfers me back into my wheelchair. She puts lotion on my back and lower legs then assists me as I dress. After I’ve brushed my teeth, she helps me dry my hair and makes sure the back looks good before I spray it and leave for work. Most days this takes two and a half hours but I can do it in two if I have to. And that’s just the morning routine.

I have a staff of thirteen wonderful women who serve as my arms and legs – doing everything I am physically unable to do so I am able to live independently in the home of my choice. Without their assistance, I would have no choice but to rely on a medical model of home care, or live in a nursing home or other medical facility. And really, who wants to do that just because they need help going to the bathroom?! I’m not sick. I just can’t move my muscles the way I want. So, I rely on them. They wash my clothes, do my grocery shopping, help me cook my meals, clean my house, water the plants and kill spiders and creepy crawlies. And they do it all with smiles, laughter and happiness.

My primary team – Michelle, Therese, Tina, Candi, and Margaret – and my back ups – Caroline, Sally W, Crystal, Sally B, Stephanie, Sarah, Ronda, and Karen – are dedicated, kind, empathetic, and reliable. They come to work in blizzards, sometimes spending the night to ensure someone will be there in the morning to get me out of bed. They have come to my house at 2:30 AM when I am about to be sick or when I have diarrhea. When I was released from the hospital last year and required an additional twenty hours of assistance each week for six weeks they took on extra shifts to help with my recuperation.

Although they don’t complain to me, I know I am not always an easy person to work for. I am picky about the way I like things done. You probably are too. If you think you aren’t – let someone else put your underwear on you tomorrow morning. You’ll discover how picky you can be! But my PAs accept my direction and follow the routine I have established. They permit me the freedom to live the life I want to live with the knowledge my care needs will be met on a schedule that works for me.

I have been managing my care since 2008. Sarah, Therese and Stephanie have been on my payroll from the start. At this point, all but one member of my team has been employed by me for at least a year. Through my interactions with them and the PAs in my past I have learned how to be a more effective manager, how to offer constructive criticism without malice, how to interview potential job applicants and how to terminate a working relationship.

November is National Home Care Month. It is only fitting that I start this monthly challenge of thankfulness giving praise to the women who work at my house each day so I can live an empowered life. I am grateful to them, and the others who perform this work across our country.

Found Time

I am a social person, and like most extroverts, I get energized by being around other people. However, there are some moments, fleeting and few, when I just want to be alone. Since I rely on Personal Assistants (PA) to help with daily tasks, when I am awake during the work week, I am with another person. Here is an example of a “weekday in the life of Dee” to illustrate my point: 

6:00 AM:  I grumble at the alarm while my morning PA lets herself into my house and starts making me coffee. She brings me coffee and helps me out of bed into my wheelchair. After a few sips of coffee, she helps me onto the toilet. While I sit there, she makes me lunch and gets out my clothes for the day. When I am done I shower, get dressed, do the hair and makeup routine and leave for work no later than 8:30.

8:30 AM:  Drive to work, alone, in my van. If I’m not sucked into a good audiobook, I alternatively sing loudly or swear and shout at the stupid people who don’t know how to drive in rush hour traffic. They always seem to be near me.

9:00 AM:  Work. I’m either at an event, doing outreach, or at my desk. I spend my lunch break writing because it is the only time I have to myself at a computer during the work week and I am determined to keep up this writing habit now that I’ve allowed myself to be a writer.

5:00 PM (OK – so more like 5:30 because I never leave on time):  Drive home, alone, in my car.  Yell at the idiots who don’t know how to stop at stop signs, or merge onto a highway.  I tend to yell at the idiots less when I’m listening to NPR or an audiobook.

6:00 PM:  Arrive home, where my evening PA is usually already there and waiting for me. I begin my “other job” – the one where I manage the PAs who work for me to meet my needs. I supervise meal preparation, laundry, house cleaning, shopping – all of those things the rehabilitation professionals call Instrumental Activities of Daily Living. In between, my PAs help me use the toilet, change out of my work clothes and shower if I wasn’t able to do so in the morning.

By 9:30 or 10:00 PM I decide I’ve had enough fun for one day and my PA helps me into bed.  She plugs my wheelchair into the charger and slips my breathing machine mask over my head before leaving for the night.

That’s the routine. Sure, there are minor changes here and there when a work event keeps me out late. But those changes don’t give me more “alone time.” My time alone is pretty much limited to the weekend, and even then I don’t get as much of it as I would like. During my normal work week, the only time I am alone, by myself, not in the presence of another human is the time I spend in my car, or the time I spend in bed.

Sometimes I get home early, like tonight. I worked all day at a Senior Health Fair. The event ended at 4:00, so by the time I packed up and hit the road, I was home at 5:15. My PA was not scheduled to come until 7:00. With a jolt, I realized I now had almost two hours of “found time” – alone time I had not planned for.

ALMOST TWO HOURS OF FOUND TIME!!! No PAs to supervise, no one who wanted to talk about their day or their problems, NOBODY else in my house on a weeknight but ME! I was so excited to have 2 hours to myself, I wasted almost 15 minutes going through the mail pile that has been growing for 3 weeks in my living room. Then I realized since I had not been in the office, I had not completed my daily writing, and I started writing about the joys of “found time.”

Do people with the luxury of regular alone time understand and appreciate the beautiful gift of “found time?” I have sacrificed the sanctity of time alone in my house in order to self-direct my own personal assistance and remain in the community. I would never change that, but this choice means I can’t just go home and turn off the world when I’ve had a bad day. For better or worse, when I get home from the job which pays my salary, I start my other job as supervisor of the wonderful PAs who work for me. While I am grateful to them, there are times I just don’t want to deal with another person but I must because I am dependent on them to function.

Usually when this happens, I tell my PAs they are not the cause of my grouchy mood. After all, my bad day or desire to be alone is not their fault. They just showed up for work, like a good employee, and even though I may want to sulk we all know good supervisors shouldn’t make their employees suffer for their own bad moods.

So when I’m lucky enough to get a few hours of “found time” I always do something for me. I never feel guilty about not being “productive” or accomplishing a task with the time at hand. Although, this blog post originated in my “found time” so maybe I’m more productive than I thought.

Even though I’m an extrovert, I treasure my “found time” for moments that recharge me in a different way than time spent with others. One day, I may learn to schedule these moments into my life so they occur with regularity. Until then, I revel in the occasional chance to spend some time in my surroundings without the responsibilities of supervising an employee.