Can you describe your living situation and the job that you do? What might a typical week look like?

I live in a 2-bedroom condo on the 3^rd floor of a 4-story building in Falls Church, Virginia. My job title is Deputy Director of the Division of Extramural Research, at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).  NICHD is one of the 27 institutes and centers that make up the National Institutes of Health (NIH), the world’s largest funding source for biomedical research.  NICHD’s mission NICHD’s mission is to lead research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all.

My typical week (before COVID-19) was focused on work Monday-Friday, for a total of about 50 hours/week on average.  I worked in my office in Bethesda 2-3 times/week and telework the other days.  I use public transportation (subway and bus) to commute, and it’s a long trip: 1 hour 45 minutes each way.  So teleworking is a big plus for me!  On a typical workday I’m booked pretty solidly with meetings, teleconferences, reviewing documents, and responding to email.  I do work some weekends too, but always from home.

Because of COVID-19, all of the NIH staff have been working from home since the middle of March. Those of us who can do all of our work from home without much difficulty will continue teleworking for the foreseeable future. I have a feeling it’s going to be even longer for me than others, I am not that enthusiastic about getting back on mass transit anytime soon. My work is still essentially the same, but now largely refocused on supporting research to understand the effects of the Novel Coronavirus on pregnant women, children, and people with disabilities.

How many different people are a part of your support team and how long have they been with you? What do they do for you? Who pays their salaries?

My longest standing support team members are my three personal care assistants. I have been truly blessed that they all have been with me now for close to 20 years. Since I have a cervical spinal cord injury and tetraplegia I need their help with the physical aspects of my activities of daily living: transfers in and out of bed (using a lift), bathing, bowel and bladder management, and dressing. In addition, they do some light housekeeping for me, like making the bed, some laundry, and washing a few dishes. They work on a planned schedule, one for three days a week, and the other two for two days a week. They will come to my home at night (usually between 8 and 10 PM), put me to bed, spend the night here, and then get me up and ready for work in the morning. They then go to other jobs for the rest of the day.

The three of them are “private duty” employees of mine: I pay their salaries out of pocket, including their portion of Social Security taxes and I directly manage all aspects of their employment with me. Two of them are also private duty employees for other clients, but those cases are managed through a home care agency. I do not work with an agency; I prefer not having that middleman. It also frees me from certain regulatory constraints that I’ll discuss below.

More recently, through the recommendation of a friend, I hired a person who does my grocery shopping and meal preparation for the week. She comes once a week, and based on recipes I choose, will purchase the needed groceries and prepare both lunch and dinner dishes for me to have throughout the week. I wish I had found her earlier! I pay her out of pocket as well.

My life is enriched by having pets, whom I also have considered part of my support team. I am fortunate to have a friend who is also an animal lover, and he helps me with the extra hands on duties of pet ownership: primarily, emptying my cat’s litter box! He comes 2 to 3 times per week just to check in and see if we need anything. He doesn’t accept payment from me, but I do try to do nice things for him when I can to show my appreciation.

How and why did you start managing all your support staff yourself?

When I was first injured, I lived in Colorado, where home health services by certified nursing assistants employed by an agency were covered by my insurance and licensed to do all aspects of my care. When we moved to northern Virginia about a year later, the situation was different. My new insurance did not cover home services. Finding assistance through an agency had to be a two-tiered structure due to professional regulations: nursing board regulations do not allow certified nursing assistants to do bowel and bladder management. In Virginia, that must be done by registered nurses. This was a big concern for me, both from a scheduling perspective and cost differentials. That is when I started looking into becoming a household employer and hiring people myself.

How did you find your support staff? Did you advertise? And what questions did you ask?

 I don’t remember all the steps, but somewhere along the line I was advised about a local organization, the ENDependence Center of Northern Virginia that had a personal care assistants registry—a list of people who were interested in providing services to people with disabilities. At first, this was not the salvation I had hoped for: none of the first ten people I called ever responded. Finally there was one: Fatina, and she has worked for me ever since!

I have never placed an advertisement for care assistants: new people have joined the team through direct referrals from Fatima. I’m sorry to say that I only specifically remember one question that I asked of Fatima when she came for an interview.  Expecting her to say no, I asked if she had any experience caring for people with spinal cord injuries. To my surprise and delight, she said yes, and handed me a letter of reference from a current client of hers, a woman my age who also has a cervical spinal cord injury.  Not only did this woman provide a good reference, she became my first friend in our new city. By that time, I was so keen to hire someone, had found only one interested candidate, and yet someone with the right kind of experience– I hired Fatima without interviewing anyone else.

In the 20+ years since, Fatima has introduced me to a total of four other caregivers, all of whom are members of her family. Of these four, two did not work out long-term and I had to let them go. The other 2 are part of my current team.

Can you identify hopeful ways you’ve kept your support team intact?

Here are five things that I believe have worked for me:

1.  Build relationships. Interestingly, I had a neighbor in our first apartment building in Virginia who was also about my age and also had a cervical spinal cord injury. We became friends, and since she had been injured for many years, and had been living independently, she would give me advice. I remember her saying to me once that I should avoid allowing myself to become too close to my personal assistants. She said it was risky, that a person could get burned that way. When I would spend time with her in her apartment, I could see the way she behaved toward her assistants. It was reserved, some might even say cold and aloof. It’s not really my style to treat people that way, but I made a conscious decision to reject her advice. From the very beginning, I have tried to get to know my caregivers, and encouraged dialogue and sharing of experience, talking about our families, other ways of just building relationships with them. Over time, I began to view them as family, and I think they feel the same about me. This engenders mutual caring and trust and makes this more than just a job for them.
2. Try not to micromanage. Everyone has ways they would prefer things to be done. And no one likes to be micromanaged. The friend I talked about who provided the reference for Fatima: she also had been injured for many years by the time I met her, and I often sought her advice. She also managed her own team and paid out of pocket.  I remember her saying to me that when it comes to managing a support team, you have to choose what’s really important to you, and let a lot of other stuff go. This is advice I chose to accept. What’s really important to me is that I’m safely prepared for every day and that my health needs are met. If other things are done differently than I would do them myself…so be it. I can tell you, I would do my dishes and make my bed way differently!
3. Manage expectations up front. This is a little bit related to the one above. Especially when you’re working with somebody new, if there are important particular things you know you will want or need on a regular basis, be specific about them up front.  By way of example, if the way my bed is made was really super important to me, then I should point out how I want it done on the very first visit, not after a few weeks or months when it has started to get on my nerves that it isn’t the way I would do it. A kind of funny story about this, which goes back to the not micromanaging: I think I must have been reading a website before I hired Fatima that was giving advice on how to bring someone on board and be clear up front about what you want and expect. As was suggested, I put together a twenty-something page manual of all kinds of rules and expectations and handed it to Fatima at her interview. This almost backfired on me. It wasn’t long before I realized that Fatima wasn’t operating strictly “by the book.” But I was safe and getting my needs met, so I let it go. Months later, or maybe even years, after we had built a trusting relationship, she said she almost didn’t show up the first day at work because of that manual. It was too much – too micromanaging, and unlike anything she’d ever seen before. It made her think I was going to be difficult. Looking back, I think I can see why! I’m sure there is a middle ground to be walked here that makes a lot of sense, but I never made another procedure manual

4. Practice kindness. If I’m aggravated, if I feel unsafe, or if a fundamental need is not being met, I need to let people know, but I always try to do that from a place of kindness. No one likes getting yelled at.  I’ve known these three women for twenty years, and I have heard their stories about many other clients who have ultimately caused them to quit. Almost always, it’s because they feel disrespected and unappreciated by them.

   As often as I can, I try to be helpful to my helpers too. I ask how things are going for them and offer emotional or other support. Things as simple as writing a nice letter of reference, or offering to talk with an immigration lawyer, or printing out and faxing a document for them, go a long way.

    

5. Be appreciative. Even after all of these years, the last thing my ladies hear from me when they leave in the morning is “thank you.” 

Are you able to live the life you imagined for yourself?

Like everyone, I’ve had some major setbacks in life, and wouldn’t be being honest if I said the life I’m living today is what I envisioned it would be, say, the day before my accident.  But who’s to say realizing those dreams would have been my best life?  I have come to realize that sources of heartbreak have offered opportunities that I might never have otherwise enjoyed.

If you were to “best” your life, what else would you want to change/add to it? What does that life and those dreams entail?

My new dream is about retirement and what comes next for me after I’m not as consumed by my demanding job.  If I could “best” that life, I would spend that extra time on personal relationships, learning new things, and supporting people and causes that are important to me.  Importantly, I dream and hope that I stay healthy enough to enjoy this new phase, and will make taking care of myself more of a priority than it has been. 

What keeps you from adding/changing those things that would let you live your best life?

I am really looking forward to that transition, but I’m not yet fully comfortable taking that big step into the unknown.  The main issue is being uncertain about whether my nest egg will cover my health and assistance needs as I age.  So I’m doing a lot of thinking and planning.

I am really looking forward to that transition, but I’m not yet fully comfortable taking that big step into the unknown.  The main issue is being uncertain about whether my nest egg will cover my health and assistance needs as I age.  So I’m doing a lot of thinking and planning.

What natural supports do you rely on?

 In addition to my wonderful friend who helps me with the cat and my coworkers and friends, I do frequently enlist the help of strangers when I need something. Some prominent examples:

• When shopping. At the grocery store, drugstore, department store, just about anywhere, I will frequently need help looking for something, retrieving it off-the-shelf, or picking it up off the ground when I’ve knocked it off-the-shelf but missed the basket sitting in my lap. I usually just grab the first person who comes along, whether it’s another shopper or someone who works at the store. I really have never experienced someone refusing to lend a hand. That said, sometimes I just don’t want whatever the item is badly enough to ask for help.
• There was a period of time when my power wheelchair, which had grown old, would experience mechanical difficulties that would prevent me from safely traveling the distance between my Metro station and my office. In these cases, I would look around for someone who gave a vibe that they were handy or even an engineer – I got pretty lucky most of the time, and could explain to them what I needed them to do to get me back on the road. I’m glad those days are over though, with a new and reliable wheelchair!
• At restaurants, I haven’t even asked the waiter or the chef to cut my meal for me, since I’m not able to use a knife.
• One day when I got off the train, almost at my home, I faced a heavy thunderstorm. It didn’t look like it was going to stop anytime soon, and I just wanted to get home. But I was afraid the water would damage the electronics on my chair. So I went to the station manager and asked her if she could find a large plastic bag for me so I could cover up and keep certain things dry. She was great; I got home mostly intact. Through that experience, the station manager and I became friendly.
• One of the things I like best about where I live, is that it is near a shopping center that I use frequently. I’m there often enough, after all these years, the people who work there know me, and almost automatically offer to help when I need it. So that way the stranger you asked for help becomes a friend

Are you able to engage with your friends whenever you choose to?

Friends are really important to me, and an immense source of strength and comfort. I have a habit of keeping photographs of friends and family (real live printed ones, the old-fashioned way!) around my home so that I’m constantly “visiting” with people who are important to me.   

For people I know well, we can make accommodations: several families have literally built ramps for me so I could come over. Or we agree to meet in an accessible place (like a restaurant or my apartment). My book club always holds its meetings at my house so that it’s easier for me.

But when it’s something more like attending a party the boss is throwing, or being invited to a party by folks I don’t know well, it’s true: barriers can prevent me from attending. And sometimes there are limits from fatigue or lack of physical access (to transportation or stairs/physical barriers at friends’ homes, for example), but yes, I am able to spend time with friends almost whenever I choose to.

Like most people these days, I lament that there just doesn’t seem to be enough time to engage with friends as deeply or as often as I’d like, and the pandemic has added a new layer of separation. But the pandemic has taught me about the value of video calling, which I am finding a wonderful way of keeping in touch with my friends (like for my book club meetings!). Now we all have barriers, and Zoom is a great way to overcome them.

What is your job? Are you able to complete all of your work responsibilities without a support assistant?

The short answer to this question is that I don’t have a dedicated support assistant who’s assigned to help me accomplish my work responsibilities.  My job primarily entails managing people, developing and implementing policy, and solving problems.  I can accomplish those things more efficiently with certain technology supports, like voice-recognition software and adaptive phone and computer hardware, but I don’t feel I need a dedicated workplace assistant.  That said, not a day goes by when I’m in the office that I don’t ask a colleague for some manual assistance, like picking something up that I’ve dropped on the floor or plugging my laptop charger in at a conference.

Do you feel alone or do you feel your life is entwined with others’ lives?

A major blessing in my life is that I don’t feel alone.  I know that there are people who really care about me and who would always be ready to talk, listen, help, support me any way they could.  That means the world to me.

What would you tell your younger self or someone just starting out with self-direction?

For the longest time, I would feel hesitant or ashamed to ask for help from friends and loved ones, thinking that burdening them with my need would drive them away.  But it’s the opposite: helping each other brings people closer together and strengthens connection.  And being connected to people is life’s greatest reward.  So I’d advise the younger me to not be afraid to have needs and ask for help. 

And then there’s a quote from Eleanor Roosevelt that I often recall when I need some extra inspiration.  She wrote, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” I’d share this with someone just starting out.

Blog post and interview by DJ Savarese, Board of Directors, Alliance for Citizen Directed Supports