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.

Furrry, fuzzy baby penguin chick holding a bouquet of pink roses.

I’m Fine Without a Valentine

If you ask my closest friends, they will tell you I am a romantic. Of course, I will deny it at first, even though deep down I know it’s true.

I love love. I love doing nice things for those I love. I love giving unique gifts I know will be loved and appreciated by the recipient.

But I don’t love Valentine’s Day.

It’s not because I have spent the vast majority of Valentine’s Days without a romantic love. Granted, this will be the 24th Valentine’s Day since I was 18 years old and I have only had a romantic love for 4 of those days.

Yes, I love having a romantic partner when that is a part of my life. It is thrilling to have someone who honors your vulnerability and likes you anyway; someone who shares intimate secrets and sends your dopamine levels soaring with compliments and kisses.

However, my self-worth has never been tied to having a romantic relationship with a man. I have always been comfortable on my own, not really able to understand those people who felt like they needed someone to “complete them,” or make them “whole.”

Some of my friends tell me it’s just because I haven’t met my “soul mate,” the person I am “supposed to be with.” They tell me to just hang on and when the time is right, “Mr. Right will come along.” What if I’m alright without a Mr. Right?

My dislike of Valentine’s Day is not because I have not been exposed to extended romantic relationships. My parents celebrated their 63rd anniversary last July, six months prior to my father’s death in December. My grandparents, aunts and uncles, sisters and brothers-in-law, many friends – all examples of strong marriages and relationships I am blessed to witness.

I certainly don’t dislike Valentine’s Day because love is absent from my life. I am fortunate to have a wide circle of support, love and affection from a variety of friends and family. These connections are central to my feeling of well-being and happiness. They sustain me when times are challenging and help me celebrate the good.

Maybe my dislike of this day meant for lovers stems from the fact that even if I found romantic love and wanted to get married, marriage is not a realistic option for me due to my disability and my need for long term care. Like most people who receive home care for an extended length of time, I rely on Medicaid to pay for my Personal Assistants. Thanks to the New York Medicaid Buy-In Program for Working People with Disabilities (MBIWPD), I am allowed to work and earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. It also varies from state to state. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. However, as a single person receiving services through the MBIWPD in my state, I can earn up to approximately $60,000 annually (the exact amount changes each year) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy. Insurance does not pay for long term care though. Medicaid pays for the personal care I need to remain an active member in my community.

But if I marry? A married couple can only have a joint income of approximately $81,000 annually to qualify for services.

I am authorized to receive 70 hours of home care each week. If I were to pay out of pocket for this care, it would cost me approximately $20/hour. That is $1,400 each week, or $72,800 a year. Just for personal care. That is more than my current annual salary, since I cannot earn more than $60,000 and still qualify for home care.

I have always said I will never put myself in a situation where my safety and security are dependent on another person. Part of it is my own independent stubborn streak, and part of it comes from conditioning from my parents who told me repeatedly as I was growing up how important it is that I be able to take care of myself. If I were to marry, I would need to find another job with a higher salary to cover the cost of my care, never mind my living expenses.

Sure, I could find a job that pays more than $100,00/year. Those jobs exist. I have the degrees and skills to be successful at those jobs. But as much as I complain about playing the Medicaid game (proving my disability every six months, tolerating the home visits from nurses and social workers to assess my needs), I play it because I need to. I am dependent on these services to live independently in my community where I am loved and valued, and can give love to those who are important to me.

That’s the love that matters most to me.

However, if anyone has any leads on “Mr. Right,” I’m not opposed to having some fun… 😉

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.

When Personal Needs Are Met

When I started this blog almost a year ago, I knew I would write about disability. I had no idea my posts about my reality would be eye-opening for so many readers. I appreciate those who have told me something I wrote caused them to think differently or observe something with new understanding. Today, I am taking a deep breath and sharing a lengthy post about recent events in my world – explaining why the past few months have been difficult. I tend not to share this part of my reality widely, so this is a big step for me. If you read the entire post and feel a need to comment, please be kind with your words.

My disability requires me to rely on others to help me perform everyday tasks. I use a consumer directed program for home care, rather than rely on an agency to staff my needs. This comes with the responsibility of recruiting, hiring, training, and managing my own staff. It is work, and I know I could give up that work and control to let an agency manage that part of my life for me. But I have yet to find an agency that can guarantee me coverage at the hours I need, for the shifts I require. Everyone I know who uses an agency has moments when they have to phone friends and family for back up assistance because an agency is unable to get staff to their house in a timely manner when someone has called out due to illness or emergency. Plus, I like the control of knowing who is coming into my house and when. How would you feel if a complete stranger walked into your home tomorrow morning to help you get out of bed and into the shower?

I have managed a team of Personal Assistants (PAs) for eight years and usually have 12-14 staff at any given time. Three are out of town PAs who are either in other locations I visit frequently or they only work with me when I travel. Five are my ‘regulars’ who are scheduled for various shifts throughout the week. The rest are back-ups, who get called upon to cover illness, vacations or instances when my regular PAs need time off. These dedicated and caring women make my active life possible.

Occasionally, I need to call upon my friends and family to help me manage gaps when a PA calls out sick or I can’t find a back up PA from my list of staff. Most of my friends who use home care dislike having to do this, even though we are eternally grateful for those in our circles of support who help us when we are in need. But none of us like being a burden. And even though my sisters and friends never make me feel as if I am a burden on them, I hate having to disrupt their busy lives so I can go pee. Or shower. Or get into bed. Or eat. Or get my laundry done. Or anything!

I have staff for that! I have used that explanation for years when people ask me how I “cope.”

Except – for most of the past three months, I have not had staff.

Since I returned from Australia at the end of March, my personal care schedule has taken a beating for many reasons. One Personal Assistant (PA) had to take early maternity leave due to complications with her pregnancy (she’s fine, and her new baby boy is also fine). Another had to have foot surgery. One PA had to take personal leave because of the unexpected death of her son. Another one moved. My primary weekend PA got a better paying job and gave her notice. My team was falling apart.

I started recruiting new staff back in mid-April, and began interviewing candidates in early May. I hired two women I thought would be good. I fired one when she called out on multiple occasions within a few hours of her shift. Then the other quit just as I was starting to feel comfortable with her.

I continued recruiting and interviewing, praying some good candidates would come my way before my friends and sisters became sick of me calling to ask for help. I did my best to maintain my regular schedule, thankful for an employer who understood my situation and granted me flexibility. I ran away to my sister Caroline’s house a few times because it was easier than trying to find coverage for holiday weekends. I had a wheelchair emergency. I used a glass of wine more nights than I should have to take the edge off my frustrations.

My regular staff (those still working) were patient, taking on as many extra shifts as they could given their other commitments. Thank goodness for Tina, who made sure I got out of bed every morning for work. I have always said the right morning PA makes all the difference in the world and Tina has been a blessing in my world for the past two years. No matter what happened the past three months, I never had to worry about whether or not I would be getting out of bed on a weekday morning. Unless you have had that particular stress in your life, I don’t know if I can adequately explain what it is like to wake up and not know how you will get to a toilet, much less get dressed and out the door. Sally came running whenever I called, even in the middle of her own family crisis. Sarah and Ronda filled in whenever they could as well, despite sometimes having health issues of their own.

People use the phrase “it takes a village” in relation to raising a child, meaning a communal effort is required. The same might be applied to my life. It takes a team of paid staff, caring friends and family, and kind neighbors to maintain my independent lifestyle in the community where I belong. Without the “village” I have curated over the years, I would not be able to function as I do.

How do I know this? I know this because when I did not have a complete team of PAs, this is what life looked like:

  • I did not socialize with friends in person. During the week, I went to work and then came home. I didn’t go out with friends. I tried not to schedule anything after 6:00 PM. I didn’t always know how or when I would be going to the bathroom and going to bed, so I had to be available whenever I could find someone to help me rather than at the time of my choosing. I am an extrovert and recharge by spending time with others. It has been a long four months, especially dealing with the blues after returning home from Australia and finding my apartment a mess.
  • I did not cook as much during the week, because I did not always have people to help me make dinner. So, I ate more prepackaged meals and frequented more restaurants. This is more expensive than cooking yourself, and not as healthy.
  • I did clean out my freezer! How long has that container of chili been in the freezer? I don’t know – but I’m hungry and I can put it in the microwave without assistance. Dinner!
  • I wore clothes from the back of my closet some days because laundry wasn’t done. Sometimes I found someone who was available to help me go to the bathroom but they couldn’t stay long enough to help me do laundry. I know the reason I am hesitant to get rid of clothing is because I remember the days (back when I was still able to do my own laundry) when it was easier to just go buy a new skirt and underwear rather than expend the energy to do laundry. Even though I’ve weeded out my clothes three times within the past year, I can still go for almost three weeks without needing to do laundry, never repeat an outfit, and still have clean underwear. Old habits die hard.
  • I did not volunteer or complete service projects with my Rotary Club. The Rotary motto is “Service Above Self” which is difficult, almost impossible, to put into practice when you are focused on keeping your “Self” functioning.

Maslow’s theory of the hierarchy of needs proposes if our basic needs for survival, such as physiological and safety needs, are not met, humans cannot reach self-actualization. While struggling to ensure coverage for my basic needs, I was content just maintaining employment so I could keep a roof over my head. Forget about self-actualization! Finding fulfillment and achieving my purpose (whatever that may be) were not even considerations. I was happy just to show up.

I am excited to report I have hired new PAs and for the first time in months, I have a complete team and feel as if I am back to living my life again – the way I want to live it, when I want to live it, how I want to live it. I have time to focus on goals and future projects. I am writing more and my writing is less negative. I even manage to crochet more days than not. I’m still not consistent on 15 minutes of crochet per day as I pledged, but I am getting better.

To everyone who listened to me whine and complain for months about the difficulty finding good staff, thank you for letting me vent. Friends and family who helped – your assistance quite literally made it possible for me to make it through the weeks with my physical health intact. I did not get sick, or develop injuries or skin breakdowns.

Home care is a basic need, just like shelter and food. Those who work as PAs or home health staff deserve credit for the crucial tasks they perform. I wish I could compensate my staff with higher wages, but because I rely on a publicly funded program (Medicaid) I have very little control over their salary. So, I continue to join others who educate legislators and advocate for increased reimbursement rates.

Sharing my experiences with others has made me realize the value in continuing to write about them on my blog.  I am not the only one reliant on these services. As long as I have a voice, and a platform (modest though it may be), I will continue to use it to inform others. If you live long enough, you or someone you know will need these services too. And you will be glad to have an ally who is not so afraid to tell it like it is.

Redefining Disability Challenge – Question 15

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the fifteenth 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 are the biggest challenges that you face in regard to disability?

One of the biggest challenges I face related to my disability is currently wreaking havoc on my personal life. So I thought I’d use today’s challenge to allow myself to rant about the difficulties involved with finding, and keeping, good staff.

I live independently in the community, in my own apartment, because I have access to home health care. I use Consumer Directed Personal Assistance (CDPA) which means I am responsible for recruiting, hiring, training, managing/supervising and (if necessary) terminating my Personal Assistant (PA) staff. Or, as I often say as part of my “paid schtick” while working, I am the CEO of me and I get to handle personnel.

CDPA is an alternative to the medical model of home care. Rather than a nursing agency sending staff to my house, I have control of who enters my house, what tasks they perform, when they work, and how the job is done. Without access to CDPA and the PAs who work for me, I would have no choice but to live in an institutional setting or rely on the regulations imposed by a nursing agency.

Instead, I manage a staff of six primary PAs and six back-up PAs. These women provide the forty nine hours of assistance I require each week to maintain my active schedule.

In essence, I work two full time jobs. There’s the paid gig I referred to before – forty hours per week for the non-profit organization that employs me. Then there are the forty nine hours per week I spend being the CEO of me.

Only for the past month I have spent at least ten additional hours each week recruiting, interviewing and training new PA staff. For many reasons (maternity leave, injury, family illness and death to name a few) my PA staff are dropping like flies. Right now, I only have five of my twelve local PA staff available to work.

I am extremely short staffed for my life, which means I am living in a constant state of high stress. Because being short staffed means:

  • I don’t know who will help me go to the bathroom after I get out of work tonight.
  • I don’t know who will help me go to bed tonight or tomorrow night.
  • I don’t know who will do my laundry and I only have two more pairs of clean underwear.
  • I don’t know if I will be able to cook the chicken in my refrigerator before it goes bad since I don’t know who is working for the next two nights.
  • I don’t know how I will get out of bed if my one remaining weekday morning PA has an accident or illness because my back-up morning PA is out with an injury.
  • I can’t even think about the weekend because I have to get through the work week.

OK, so I may be acting a bit dramatic. I have friends and family. Someone will come to help me go to the bathroom and someone will help me go to bed. I always find “someone.”

But the point is, right now, I don’t know who those “someones” will be. And it will take many “someones” so I don’t burn out the goodwill of the friends and family I have been calling on for the past month. And not knowing means I have to take time out of my life to plan. Which means I am not as attentive or productive at work, and I am not available for the volunteer service I enjoy. It also means every little annoyance bothers me ten times more than it would – like just last night when I cried because the new PA who has worked for me for two weeks was a no call, no show, and I just didn’t have the energy to find assistance at the last minute once again.

I could keep writing, but I need to go conduct phone interviews with two more potential PAs. With any luck, they will be available for some of the shifts I have open.

And I need to go find someone who will help me pee and go to bed tonight.

In the meantime, I’m hiring – if anyone has any good candidates to send my way…..

 

 

30 Days of Thanks Day 6 – Constance

Constance
Constance Laymon. Photo courtesy of Consumer Directed Choices, Inc.

I met Constance Laymon for the first time in the halls of the New York State Capitol in early 2002. She was the founder and CEO of a new company, Consumer Directed Choices. (FULL DISCLOSURE – I am now an employee at Consumer Directed Choices but I am not getting paid to write this or promote my company on my personal blog.) Constance was at the Capitol that day advocating for increased access to Consumer Directed Personal Assistance (CDPA) as an alternative to traditional homecare. I was having my photo taken with some elected officials in my Ms. Wheelchair NY 2001 sash. I was not using CDPA at the time, nor was I an employee of Consumer Directed Choices. I had heard her name, and knew about this alternative model of homecare.  We were polite to each other, sizing each other up as fellow advocates and deciding what impressions we would take away. She later told me she thought my sash was a bit much. I confessed I was surprised to hear her drop so many F-bombs in front of the Assemblyman we were both waiting to see.

Over the next few years, Constance’s company began to take off, growing in budget and Consumer base. I continued to advocate with Ms. Wheelchair New York titleholders. We would see each other at disability conferences, lobby days and community events. Gradually, as we learned more about our shared experiences as wheelchair users and advocates, we became good friends.

Constance sustained a spinal cord injury in the 1980’s at the age of 17. Just a few weeks before her high school graduation, she fell over 100 feet from a cliff while running through the woods with friends. Constance went through rehabilitation, learning how to perform everyday tasks in new ways. She moved to Albany to have better access to reliable homecare and transportation. She believed education would be the key to empowerment and enrolled at a local college. After college, she began working at a local Independent Living Center, where she learned about CDPA – a new model for homecare. CDPA puts the decision making back in the hands of the Consumer, the senior or person with a disability, receiving the care. Constance was always a bit of a rebel so this model appealed to her. As a “patient” she was often viewed as “difficult to serve” or noncompliant by the traditional medical model.

Constance created her company to fill a need in the community. She knew first-hand how self-direction could change lives and worked tirelessly to build the infrastructure necessary to make self-direction a reality for others.  The company grew as the community learned how self-direction increased independence and empowerment. But even as she found business success, Constance always held the Consumers first in all of her actions. She was selfless in her activities and famously left an important policy meeting with the NYS Commissioner of Health to take a call on her cell phone from a Consumer in crisis.

I began using CDPA in 2008. Constance was a valuable resource as I navigated my role of employer to my care team. A night owl, we would have late night conversations about disability issues, dating, managing Personal Assistants, and living as single, independent “chicks in chairs.” In 2012, she called me to tell me of several job openings at Consumer Directed Choices. Constance knew I was unhappy and searching for another employment opportunity. I told her I didn’t want any special consideration but in all honesty, I was thrilled at the chance to work with another strong advocate. I accepted the job of Communications and Outreach Specialist and eagerly took on my new responsibilities for an organization which captured my passion.

On September 21, 2012, just a month after I joined Constance’s team, we received the terrible phone call telling us of her unexpected death. My colleagues and I sat in stunned silence in the conference room. It took weeks for the reality to set in – she wasn’t coming back. I’d never see her wheeling down the hall. I’d never hear her laugh as I put her on speaker phone while transferring into bed late at night – telling her to hang on while she said, “Come on – how long does it take you to get both ass cheeks on the bed?!” There was still so much I wanted to learn from her! I raged inside each time I went by her empty office – the room a stark reminder of what was gone.

Constance never apologized for who she was. She swore frequently, worked long hours, loved candy and Mountain Dew, and spoke the truth to everyone even when she knew it wasn’t what they wanted to hear. She was a devoted advocate and a source of strength for all of us who knew her.

Tonight Consumer Directed Choices will hold the annual Constance Laymon Personal Assistance Recognition Award Ceremony. This ceremony, now named in her honor, was started by Constance as a way to reward the Personal Assistants who provide such crucial work to those of us who rely on CDPA for our independence. I will join my colleagues, our award recipients and their employing Consumers in remembering a tireless advocate and a dear friend. I am grateful to Constance for offering me the opportunity to use my skills towards a mission which ignites me and gives me purpose. She rekindled my advocacy goals. I hope she is proud of us as we work to continue her legacy of self-direction for all.

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

30 Days of Thanks Day 1 – My Amazing Personal Assistants

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

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

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

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

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

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

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

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