A Good Morning?

As I start typing this, it is 7:31 AM on a Thursday. I have only been awake for an hour and a half, but already I feel like I have worked a full day. Some days, it’s like that when you use Consumer Directed Personal Assistance (CDPA) or self-directed home care.

In CDPA, I am the “CEO of me” and I am in charge of personnel. I recruit, train, supervise and manage the home care workers (Personal Assistants or PAs) who work for me. A business called a Fiscal Intermediary is responsible for the administrative paperwork and payroll required so my PAs get paid. In New York, where I live, I choose my Fiscal Intermediary. I happen to be employed by the Fiscal Intermediary I chose, Consumer Directed Choices.

It’s difficult to explain to nondisabled people who don’t use CDPA how intimate personal care is. Personal care creates a codependency in which both parties, the care recipient and the caregiver, rely on each other for a variety of reasons. I cannot function without the women I employ. They cannot function without the wages they earn from their work. We are tied together by complimenting needs, but we have developed relationships over time which go beyond typical employer/employee constraints. And for me, the most important member of my care team is the morning PA.

Today started like most mornings. My alarm buzzed. I shut it off and took stock of my surroundings. I heard Tina, my morning PA, in the bathroom. I smelled coffee. So far, so good.

As soon as Tina came into my bedroom, I knew something was wrong. Her energy was flat and she was not her usual upbeat, positive self. I could tell she was not feeling well and knew this would impact my morning. Tina and I have worked together for seven years now, so it is easy for me to gauge how she is feeling with just a look. She is the first person I see most days and normally makes my transition from sleep to work an easy one. We can anticipate each others movements and know how to make the morning routine go smoothly.

So today I was not surprised when she looked at me and said, “You OK for a minute Dee?” before running to the bathroom as I nodded. Tina was sick and I was going to have to change my routine before even getting out of bed.

This is what happens when you rely on other people. At least this is what happens to me.

When one of my PAs is sick or unable to work, I instantly go into problem solving mode. This level of executive functioning is necessary for me to be able to juggle my own bodily function needs while still balancing the need to show up for my job as my employer expects. The thoughts that filtered through my head this morning went something like this:

Is Tina too sick to at least get me out of bed? Is a shower out of the question? If I send her home, is there anyone else I could call to finish her shift? What is absolutely required for me to be able to function today?

Thankfully Tina was able to help me get out of bed. However, it soon became apparent she was too ill to continue her shift. Then the questions in my head shifted:

Is there anyone else I could call to help me use the toilet? If I don’t shower this morning, when can I shower? What time is my first meeting today? Am I on camera? If Esther helps me use the toilet after her shift at her other job, would I need to reschedule any work meetings?

I sent Tina home after she helped me put on a clean shirt (at least I will be presentable on camera!). I left a message for Esther and turned on my computer. I said a prayer of gratitude – at least I’m out of bed drinking a cup of coffee!

I logged onto my work computer to check email. My body started sending me signals that waiting for Esther wouldn’t be possible. I opened my contact list and started scrolling. The questions began again:

Who is relatively close and could spare an hour to help me use the toilet? Sally can’t make it before she has to be to work. Brooke has class this morning. Margaret never responded the last time I was looking for someone so is it even worth asking her? Maybe Sandy hasn’t left home yet and has time to stop on her way to work.

Thankfully, I caught my sister Sandy just as she was getting ready to leave home. She didn’t need to be at the office today until 10 AM. She had time to stop over and help me use the toilet. It was time for a quick gratitude list:

  • I’m up and out of bed.
  • I have coffee.
  • The internet is working.
  • I am able to work from home so it doesn’t matter if I am only dressed from the waist up (Guess what? I’m only dressed from the waist up today!).
  • And I’m getting a quick visit from my sister.

Now it is 8:15 AM and Sandy just got here. It’s going to be a good morning after all.

30 Days of Thanks Day 19 – My Work Colleagues

I am employed by a small nonprofit organization, Consumer Directed Choices (CDChoices). I have written about my wonderful co-workers and once again I owe them an expression of gratitude for all they have done this year to help me survive. My year would have been more stressful without their generosity and assistance.

In my role as the Communications and Outreach Specialist at CDChoices, I am often called upon to explain our company’s function and purpose. We are what is known as a Fiscal Intermediary for Consumers – seniors and people with disabilities – who self-direct their home care using Consumer Directed Personal Assistance. We administer wages and benefits for the more than 1,600 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.

Because we have a small office (less than 25 employees), we have the opportunity to develop close relationships and friendships with each other. Sure, I am closer to some colleagues than others, but I am friendly with them all. And there is not a single person I do not like or dread seeing. I am blessed to enjoy and find purpose in my paid employment.

The fall which caused my femur fracture happened in the middle of the afternoon. My boss, Elizabeth, was expecting me to log on from home to complete my work day after I used the toilet. Instead, my former PA disregarded my instructions and I ended up on the floor waiting for an ambulance to arrive to take me to the hospital.

Elizabeth is one of the most understanding supervisors I have had in my professional life, and has received several emails from me over the years with updates like, ‘My PA is late so I’ll be late today,’ or ‘My wheelchair batteries aren’t holding a charge so I need to get them repaired before I can come into work.’ I do my best to keep her aware of what is preventing me from doing my job because I know she expects me to complete the tasks for which I am responsible.

I never expected Elizabeth to come to the hospital to check on me, but that is what she did the day after I fell. She was just the first of many colleagues to come visit me in the hospital. Carol and Melissa stopped in before my surgery. Thabie brought chocolate and potato chips when she came because she heard I was craving junk food. MJ brought crossword books. I think it was Anne and Archana who brought the plant and tea, but that was during my “doped up on pain medication” days, so my memory is a little fuzzy. The point is – my work friends made life in the hospital more bearable.

My colleagues sent me flowers and cards throughout my hospital stay. When I went home, some of them brought me casseroles, soups and bagels. They stopped by for visits which helped to keep me involved with what was happening at work, allowing my mind to focus on something other than pain and rehabilitation.

My work friends also gave me the incredible gift of paid time off. Several donated their own sick time to me so I could receive my salary during the three months I was out on medical leave. This act allowed me to focus on my recovery without the stress of how I would pay my rent, car loan and other living expenses.

So, again this year I stop to give thanks to the people who I interact with each day at work. I am blessed to have caring and compassionate colleagues. As a team, we support each other through difficult days, and celebrate our joys. Your generosity this year made it possible for me to recover from a life-changing injury with less stress and anxiety. I am grateful to all of you.

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!