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.

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.

Prioritizing Me

At the start of 2015, I read several blog posts written by friends describing how they selected their “One Word.” I have never tried selecting “My One Word” but I thought it might be an opportunity to incorporate more intentionality into my daily routine. After spending several days with a thesaurus and my thoughts, I decided on my word for 2015:

Charitable

I shared my word with this post, explaining my selection. The definition, “merciful or kind in judging others,” described a trait I wanted for myself. Instead of rushing to the negative, rolling my eyes, or silently huffing an exasperated sigh, I would try to be charitable.

Just before New Year’s Day 2016, I started reading about the words my fellow writers had selected. I was not feeling successful with the word I had selected for 2015, and had not considered repeating the exercise this year.

Did selecting a word actually make me exhibit more charitable behavior? I certainly tried. But all too often, I would roll my eyes, sigh in exasperation and spout off negatively without demonstrating mercy or kindness. Then, I would remember my word and curse at myself for not being charitable. Honestly, participating in My One Word often made me feel like a failure in 2015. Rather than actually demonstrating charitable behavior, I repeatedly realized (too late) how many times I rushed to judgement. I felt it called attention to all the instances when I could have done better, but failed to.

The exercise was not be a complete waste. After all, I may not have recognized my behavior if I had not been focused on the word. Having awareness in the moments when I failed to act charitably did encourage me to take a few moments to seek out positives about other people. For example, when my Personal Assistant ‘J’ consistently displayed difficulty following verbal directions, I began to react with impatience and frustration.

No, I said the cabinet under the toaster, not the cabinet under the microwave.

They go above the dishwasher, not over the stove. I don’t keep things I regularly use over the stove – I can’t reach those cupboards!

Were you listening? It’s in the pantry, not the linen closet. Why would I keep a box of crackers in the linen closet? 

I actually said these things, and other statements like them, many times. True story.

This communication did not help either of us. She was doing her best, but J was unable to follow complex verbal instructions such as “Dry the mug (instruction 1) and put it in the cupboard (instruction 2) over the dishwasher (instruction 3).”

Once I discovered her auditory processing difficulty, I compensated by changing our interactions. I used written lists when I could. I broke complex tasks down into step by step activities and only gave her one verbal cue at a time. It was not easy, but she was a reliable employee – always showing up on time for her shifts, willing to cover for others, kind and considerate – and I felt I could manage to be more charitable and accommodating as her employer. Every time I got frustrated and began to think less than charitable thoughts, I reframed the voice in my head and ran down the list of good qualities she possessed. I knew she needed the job, and even though we didn’t work perfectly together, I thought we were alright. Things weren’t exactly as I wished, but this was what it meant to  be charitable, right? I took deep breaths and attempted to continue to make improvements in our working relationship as the months went by.

This worked until January 13, 2016. At 2:36 PM, (I know the exact time because I looked at the clock as it was happening) I was transferring from my wheelchair to the bedside commode with J’s assistance. Suddenly, my right knee gave out on me and I knew I was not going to be able to remain on my feet. Calmly, I instructed J on how to best assist me. I was too far into the transfer to safely make it back to the wheelchair. The bedside commode was not sturdy enough to stop me if we tried to move onto the commode. The only thing to do was to have J slowly lower me backwards onto the floor. I gave instructions, which J ignored. In fact, she began to argue with me stating that she couldn’t let me go to the floor.

Months of attempting to be charitable flew out the window when she dropped me. As my leg snapped under me and I began to scream in pain, I recognized the cost I paid for my “charity” in allowing her to continue employment with me when I knew inside we were not a good fit.

There are many instances in my life when I can afford to be, and should endeavor to be, more charitable towards others. When it comes to my personal care and my safety, I no longer have room for charity towards those who are helping me. Tasks must be done as I instruct, without question or hesitation. The consequences of my Personal Assistants not following my directions can be dire,  life-changing and life threatening.

Think I’m being dramatic? The last time I had surgery and ended up hospitalized, I almost died. My broken leg has changed everything in my world. I am unable to put any weight on my leg, for at least another three weeks. I cannot drive right now, so I am truly home-bound unless I convince someone to drive me. I now require additional adaptive equipment to safely transfer in and out of bed, to and from my wheelchair, on and off the commode.

I have hired new staff and I am setting the ground rules from the get go. I will not compromise on my safety. I cannot afford to.

Even for the sake of being charitable.

X-ray photo of a knee and femur. The femur is broken and there is a metal plate along the side of the bone with 13 screws.
My new hardware, installed in January 2016. See the fracture?

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!

Redefining Disability Challenge – Question 41

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the forty-first 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:

Free post day! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.

 

 

Redefining Disability Challenge – Question 37

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-seventh 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:

Have recent advancements in medicine or technology had any effect on the way you manage your disability?

This may be a question of semantics, but I have never considered “managing” my disability as something I do in my daily routine. Some medical providers talk about “managing” your diabetes or blood sugar, or “managing” hypertension. Changing technology has made it easier for me to function in a world designed for the nondisabled, but I have never defined that as “managing” my disability.

Because I am a word geek, I did what I often do when I am writing. I opened my dictionary and read definitions of “manage.” According to my trusty Merriam-Webster, manage is a transitive verb meaning “to handle or direct with a degree of skill; to treat with care; to exercise executive, administrative and supervisory direction of; to succeed in accomplishing; to direct the professional career of.”

There are other uses as well. As an intransitive verb, manage means “to direct or carry on business affairs; to achieve one’s purpose.”

I have always said I cannot “manage” a progressive neuromuscular disease. I cannot handle or direct with any degree of skill the manner in which my muscles deteriorate.

But, I do strive to treat myself with care. Certainly, I know I exercise executive, administrative and supervisory direction of my life. I have shown success in accomplishing and directing a professional career for two decades. I most assuredly direct or carry on business affairs. I manage my Personal Assistants (PAs) on a daily basis to achieve my purpose of living what I consider to be a good quality of life in a body which does not always function as I wish it did.

Yes, my progressive neuromuscular disease is going to progress as it will. I have no control over it and cannot manage that part of life.

However, I do my best to live a healthy lifestyle, get adequate sleep, eat nutritious food – all things which in theory should help me function at my best. I use technology to my advantage to be as physically active as possible in my community – an elevating wheelchair, an electric hospital bed, a modified van and more.

There is not an approved drug treatment which will slow the progression of my disability. Physical therapy and stretching may help slow the progression of joint contractures and muscle atrophy, but insurance will not pay for continued “maintenance” treatment which is not “restorative.” There is technology which improves my independence. I communicate with my PAs using text messaging, eliminating the need to wait for a return phone call when I am looking for a back-up to help me get in or out of bed. The emergency response alert system allows me to call for assistance with the touch of a button. Yes, I have one of those “I’ve fallen and I can’t get up” bracelets. I don’t wear it, but it is next to my bed should I need to summon help when I am alone at night.

I wrote about “managing” life as a person with a disability last year for the AbleBodies blog. In that post I wrote how I view managing as merely making choices in life.

All of us, no matter our physical ability, are given the opportunity to make choices. However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices. The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider. The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.

We all make choices to help us “manage.” Everyone adapts to the abilities they have and makes life decisions for a variety of reasons. I choose to focus on making choices which maximize my ability to engage in the activities which are most important to me. Whether or not anyone else agrees with these choices, they are my choices. It is how I manage.

30 Days of Thanks Day 5 – My Work Colleagues

Not everyone gets up in the morning and looks forward to spending their day at work. They gripe about their co-workers. They complain about their supervisors. They wish they didn’t have to go to their job because they don’t find purpose or meaning in their work.

If these people worked in my office, they would not feel this way.

My paid employment is at a non-profit company, Consumer Directed Choices. It was founded by my friend Constance and a group of people with disabilities and their families in 1997. CDChoices has been operational since 2001 and I joined the team in 2012 as the Communications and Outreach Specialist.

As an agency, we are what is known as a Fiscal Intermediary for Consumers – seniors and people with disabilities – who self-direct their homecare using Consumer Directed Personal Assistance. We administer wages and benefits for the more than 1,200 Personal Assistants (PAs) employed by our Consumers. This allows our Consumers (people like me) to recruit, train, supervise, manage and terminate the PAs they employ.

I call Consumer Directed Personal Assistance the program which lets me “be the CEO of me.” I get to handle personnel – the staff I hire who assist me at home. And CDChoices is my fiscal partner, making sure my staff get paid. That is a simplistic way to explain what we actually do in the office.

What my colleagues do is not just process timesheets and other administrative work. They allow people to live self-directed lives of empowerment. Because they are all committed to the mission and vision of providing and advancing community supports to promote self-direction, there are more than 600 people with disabilities (like me) in the greater Capital Region of New York who do not live in nursing homes or other institutions. Instead we are living in the community, with our families and friends.

My colleagues don’t just follow the mission at work, they live it daily. Many of them have personal or family connections to people with disabilities so they understand the importance of respect and dignity for everyone. Some of them have worked for other disability service organizations and are drawn to this work because they want to make a difference.

Most importantly, my colleagues are kind, compassionate individuals who are willing to assist others. Two years ago when I was unexpectedly hospitalized and then out of work for six weeks, many donated their paid time off so I could continue to receive my full salary during my recovery. I sobbed with relief when my boss called to tell me this because I knew I only had a week of personal time and was worried about income. Last year they donated supplies for a local animal rescue. Each year in December, our staff volunteer at a local city mission when the mission has its annual “toy store” for families in need. While my wheelchair was in the shop for repairs (again!) this past week, several colleagues took turns helping me in and out of my vehicle so I could get some work done in the office.

We are a small office – less than twenty people – so we have the chance to get to interact with everyone on various projects or committees. We are professional, diligent and capable of hard work, but as a group we are also able to have fun.

Every other week in the summer months we grill lunch on Fridays for “Hot Diggety Dog Days.” Last winter we learned how competitive some of our colleagues are when we moved the bi-weekly lunches indoors and tried team trivia over pizza. In the weeks leading up to Christmas, people take turns posing our office elf before they go home so we will be surprised the next day. I worked for almost eight years in an office where fun was not encouraged often, so this atmosphere is a welcome change.

When I first learned I was going to Australia, I quickly told everyone at work. As plans came together, I would share my updates. Everyone was enthusiastic and excited, asking me about where I would stay and what I would be doing. They celebrated my success as I raised funds for the trip. I would check my personal email on lunch and often news of a generous donation would bring me to tears. I cried many days last November and December – tears of overwhelming gratitude every time someone made a donation.

Then the week before Christmas, Melissa came to me with a card. Once again, my colleagues and friends caused me to sob when I opened the card and learned of their generous assistance. The messages on the card were encouraging and reminded me once again how blessed I am to spend each day with supportive and charitable people.

Tonight our team will gather for the Constance Laymon Personal Assistant Recognition Awards. In 2010, Constance created this annual event while she was CEO. She envisioned a ceremony which would allow Consumers the opportunity to spotlight the exceptional work performed by the PAs they employ. Following her death in 2012, this ceremony was renamed in honor of our friend and former colleague.

As the audience applauds our Consumer’s exemplary employees, I will also be giving silent thanks for my fellow colleagues.

Anne, Archana, Ben, Carol, Chris, Elizabeth, Jordan, Karen, Libby, Luci, MJ, Margaret, Margie, Melissa, Naomi, Sally, Suzanne and Thabie – every day you make me want to do more and strive harder for excellence. You make me smile when I am discouraged or frustrated. You provide comfort when I am struggling, and you give assistance freely whenever it is needed. Thank you for your support in helping me share the message of self-direction with others!