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.

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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.

 

 

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!

 

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.