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 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!

 

Redefining Disability Challenge – Question 27

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

What is your opinion about forced treatment, and who should decide when a person is or is not capable of making sound decisions about treatment?

Personal autonomy is important to me. My body is my own, and I expect to be part of any discussions related to my care or my life. I was raised by parents who supported this idea and taught me how important it was for me to be an expert on “Denise.”

As a child, I was never excluded from discussions between my doctors and my parents. They included me in every medical visit, even when the doctors wanted to talk to my parents about “things I wouldn’t understand.” My questions were answered with patience at a level appropriate to my cognitive ability and maturity. If doctors or interns asked my parents about having me removed from the room, they would explain this was my appointment, my body, and I had a right to be there. As a result, I learned about my disability at a young age and was able to explain it to other children who often asked, “Why do you walk funny?”

I am skeptical of any medical professional who does not treat me as an equal member of my care team, an expert on my body, capable of self-direction. I have ended relationships with doctors who came highly recommended as “experts” because they did not listen to me or acknowledge my questions or concerns. It is important for me to feel heard and respected as the expert on my body.

For the most part, I have never been in a situation where I have had to endure forced treatment, unless you count all of those years my parents forced me to do physical therapy as a child. I hated physical therapy. PT, which in my mind stood for Pain and Torture, consisted of having my contracted joints and muscles stretched two or three times each week by women who seemed nice enough on the surface but never quite convinced me they didn’t secretly want to see how much agony I could endure before crying out. It was a contest of wills. How long could I lay on the mat doing deep breathing while they manipulated my arms and legs? If I made them break a sweat trying to stretch my hamstrings, I won. I almost always won.

Looking back on the PT I received as a child, I know my parents were doing what they felt was best for me – and it was good for me to be active. I maintained the ability to walk until I was twenty years old. I lived without needing daily homecare until I was thirty four years old. My muscles would have atrophied at a faster rate and my joint contractures would have progressed at a more rapid pace without exercise and stretching.

My experiences with forced treatment as a child are much different than adults who live with intellectual disabilities or mental illness. Questions of capacity, or the ability to make decisions and understand the consequences of your actions, are grey areas and cause feelings of unease in many. Many feel they are acting “in the best interest of a patient” when they advocate for forced treatment, and maybe they are.

I don’t have answers. I have questions.

Should adults with intellectual disabilities be seen as capable of consenting to sex and receive appropriate sexual education? Should adults with a diagnosis of mental illness be forced to take medication in order to receive public assistance or crisis housing? Should single parents who acquire a disability automatically lose custody of their children just because of their new physical or mental disability? Should people in the early stages of Alzheimer’s be engaged in discussions about advanced directives and end of life care?

When I worked as a speech-language pathologist, I was often involved in conversations regarding a person’s ability to safely eat and swallow. My goal as a medical professional was to give as much information as I could so my clients could make informed decisions. I never told anyone, “You can’t eat anything by mouth ever again.” I did my best to explain the risks related to their specific case knowing they had the right to refuse the recommendations I made to their doctors, who had the power to change medical orders related to diet and food and fluid consistency.

Sometimes my clients went along with my recommendations and the prescribed diet changes. Sometimes they chose to refuse. I was never angry when my recommendations were ignored by a client. After all, I routinely ignore recommendations made by medical professionals who are “only concerned about me.”

If I demand the right to self-direct my own care, it is important to me that I take a stand for others who demand the same right. In my daily work activities, which now include advocating for self-directed home care, I try to educate others about the importance of autonomy. Fellow blogger Hannah, who writes over at The Pen is Mightier than the Sword, wrote a great post about a bill of rights as an autonomous disabled person.  In it she writes, “If I say that a solution does not work for me, people need to listen to that and respect that.”

Respect. Isn’t that what everyone wants? Isn’t it what we all deserve?