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… 😉

Why I Have Not Written About Japan

On July 26, a day when I should have been celebrating the anniversary of the Americans with Disabilities Act, I was attempting to process the news of an unimaginable hate crime. Instead of gathering with my disabled peers in joy, I was sobbing as I imagined what the victims had experienced during and after the massacre in Sagamihara, Japan.

You haven’t heard about the massacre? I would bet you aren’t the only one.

Around 2:20 AM, a former employee of a residential facility for the disabled in Sagamihara committed the largest mass killing in Japan since World War II. He broke into the building, tied up the staff members, and stabbed the disabled residents, killing 19 and injuring 26. The victims ranged in age from 18 to 70, both male and female. Most were stabbed in the neck. throat, and chest as they slept in their beds.

I waited for the “mainstream media” to cover the story. After all, hate crimes and terrorist acts have been receiving a great deal of attention. Nice, Brussels, Orlando, Paris, Munich – I’m guessing you recognize recent stories related to these places.

Instead, I read stories like this Japan Times article which described the crime as a “mercy killing.” According to the article, the killer believed he was providing mercy to the victims’ caregivers because “it would be better if the disabled disappeared.”

There was no mass outcry of horror and disbelief. There were no large expressions of sympathy and solidarity.

Then, slowly the messages began to come from the worldwide disability community as they wrote social media updates, blog posts and essays. Reading them, I was grateful for these brave writers who took the time to capture the loss, rage, sadness and fear so many of us felt. I was able to share their work when I lacked the energy and stamina to compose my own response to this terrible act.

I tried to write. I attempted to find words to express my emotional response. If ever there was a time when I needed to add my voice to help draw attention to an event, this was it. But whenever I tried, I got stuck in the same mental prison.

Those nameless victims? They were me. If I had been a resident in that facility, I would have been one of those who went to sleep one night in July only to have my throat slashed while trapped in my bed, unable to escape injury or death.

The victims’ only crime – my only crime? Being born disabled. Less than. A burden. Incompetent.

Murders of disabled people are incorrectly called “mercy killings” by media outlets because of the ableist belief that disabled lives are so invaluable or unbearable that our murders are acts of mercy. Don’t believe me? Remember Tania Clarence – the mother who killed her three disabled children and was only charged with manslaughter? I wrote about the case in this post. How about the mother who received a charge of involuntary manslaughter for VOLUNTARILY poisoning her disabled daughter and killing her? If the victims of these crimes had not been disabled, would the charges have been more severe?

Writing about the massacre has also been difficult because my own personal care situation has been strained for the past month. Last summer – almost exactly a year ago – I wrote about how life is different when personal needs are met. Just this past month, I have had two Personal Assistants (PAs) out of work for hospitalizations; one out due to a broken foot; one out due to complications with her pregnancy; and one out due to a family emergency. These are legitimate reasons to be absent from work. But my need to use the toilet, get dressed, eat, get in and out of bed, work, live – insert action of your choice here – does not stop just because I do not have my regular staff available to work for me. Yes, I have other staff but they are not always available to work at a moment’s notice. If it were not for the support and assistance from family and friends, I would have no choice but to rely on institutional care like my disabled peers in Japan.

Facing a crisis in personal care, knowing that I would be institutionalized without the generosity and kindness of a support network I have carefully cultivated, and reading about the murder of innocent disabled people in a setting where they should have been safe – well, writing has not been a priority in my life. It is a shame, because I need the therapeutic outlet of writing even more when I am stressed and emotional.

I really need to write. I am a writer – and writers need to write.

So, I set a goal to post something – anything – about Japan this weekend. I am not certain this post captures everything I want to say about it, but at this point it is the best I can do. To the friends and family who have reached out to me since the tragedy in late July, I appreciate your kind words. Thank you for sharing stories and for helping to call attention to this tragedy. We owe it to the victims to continue to fight against the stigma and negative attitudes towards the disability community. We must ensure all life is valued, so nobody has to fear that society views their life as a burden or expendable.

Because that disabled person trapped in an institutional bed? That person is not just me. It’s you.

Medical DeeScriptions

Today is Monday, January 25, 2016. Twenty-five days into a new year and my life has already had one year of action packed in. Here’s what is happening, and a brief glance at where 2016 will take DeeScribes.

I spent an enjoyable week at my sister Caroline’s house for Christmas/New Year vacation. It seems like years ago, not just three weeks. I played with puppies, crocheted projects, wrote, and visited with friends and family. It was a perfect week.

Just before leaving my sister’s house, I checked my bank account balance online. I planned to make a few returns and needed to check on my status. I discovered someone had written over $1000 of fraudulent checks.

The fraud caused me to take additional time off work to process the paperwork and fraud protection account changes. I have always had good relationships with my local police officers. Unfortunately, it is not the first time I have been the victim of theft.

At the end of the first week, I began to get sick. An ear and sinus infection kept me home for five days, coughing and congested. Of course, my wheelchair decided this would be a good time to die, so before I could go back to work Wednesday, January 13, I had to get my chair fixed.

With a working chair, I powered through 4 hours in the office before heading home. I am trying a new work schedule which permits me to work part of my day at home so I have access to an accessible rest room. Good thing, since that Wednesday my body decided to surprise me by starting my menstrual cycle. I know I don’t typically share this much personal detail here, but trust me – it’s relevant.

It’s relevant because it is why I used the bathroom with urgency on Wednesday afternoon. Or, at least, I tried to.

Instead, my leg gave out as my Personal Assistant was transferring me onto the commode. She didn’t listen to my commands, and she dropped me.

SNAP!

I heard it crack as my butt hit the floor. My left femur broke in two places.

Imagine the scene – me, half naked on the floor by the commode, bleeding profusely, knee blown the size of a basketball, a whimpering Personal Assistant trying too late to make things better, with the police officer who worked with me for five days to arrest the women who stole from me. Can you see me sobbing on the floor, in a puddle of blood, with the policeman rubbing hair out of my face while we wait for the ambulance? It wasn’t pretty.

It definitely wasn’t pretty as they moved me to a backboard and lifted me to a stretcher. It was downright ugly as I swore in pain while they secured me in the rig.

Competition at the operating rooms meant surgery did not happen until Friday. For 36 hours I lay in agony, anxiety about impending surgery coursing through me. The last time I had “routine” surgery in 2013, I spent four days on life-support in the Intensive Care Unit.

Thankfully, surgery happened on Friday. According to my surgeon, my leg is now held together with (his exact words) “plates, rods, some chicken wire and a little bubble gum.” I don’t know the exact ratio of those components. I’ll do some investigating.

For the past ten days I have slowly started the healing process. My body has been drastically changed and I don’t know what the end result will be. I don’t know where I will come out but I do know these things:

  1. Orthopedic surgery still hurts worse than any other pain I have ever felt. I forget sometimes, and then things happen to remind me.
  2. Friends and allies who speak up for you are worth their weight in gold. Once again, I was in a position to require others to have detailed conversations about my heath wishes. We have had these discussions amongst ourselves before, so when emergencies occur they know what I want. I am blessed to have Sandy, Sally, Stephanie and so many others to advocate for me when I am weak.
  3. Nurses and patient care technicians deserve to earn far more than they make. Especially the ones who answer your call bell at 2:30 AM because your eye is tearing and you can’t reach your face to itch it. And the ones who clean you up after your laxative decides to start working. And the ones who heat the soup your sister makes for you because nothing tastes good. And the ones who have to try to make you comfortable after your urinary tract infection causes you to void with urgency every half an hour. And the ones who listen to you and respect you as an expert on your body.
  4. Complementary medical treatments need to be funded and supported. The massage I received reduced my leg pain more effectively than the narcotics. And human touch is so essential for healing.

I am waiting to learn where I will go for rehabilitation. I will be non-weightbearing for at least five more weeks according to the doctors. The real work is just beginning. Transferring, driving, working, living arrangements – all of these unknown factors are still to be faced. This injury is a game-changer. There is no doubt about it.

But I am a tough cookie. And I have too many things to do. There are books to write, people to reach, hearts to touch. I am overwhelmed by the love and support given to me these past ten days. I am gathering such great fodder for future work! And I am witnessing countless acts of service and love which make me want to work harder.

To the nurses and doctors at St. Peter’s Hospital, especially McAuley 2, you are rock stars. It has been great to get to know you. I’m going to have fun writing about our times together!

I’ll blog as I am able. Letters and cards from friends have been positive and keep me focused. If you reach out to me and I don’t respond, please try again because I know I am not at 100%.

Thanks for reading, and for sending positive energy my way.

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.

Making “The Ask”

Do you like to ask for help? Do you do it as often as you should? Do you accept assistance from others willingly or as a last resort?

I ask for assistance daily, and have for as long as I can remember, because of my progressive neuromuscular disease. This doesn’t mean I enjoy doing it. It also doesn’t mean I do it as often as I should. I am stubborn, and if there is a way I can do something on my own, I will. Even if it takes longer and wastes precious energy I could better spend on another task.

It can be difficult to admit we are dependent, but the truth is none of us can survive without assistance from others. Everyone relies on other people to get through life. However, knowing we all rely on outside assistance to varying degrees doesn’t make it any easier to ask for help when we need it.

As is often the case for many seniors or people with disabilities, my decision to let others help me with my daily tasks was made when I fell. I lay on my bathroom floor on November 15, 2007, at 1:14 AM, waiting for the paramedics, sobbing not due to my injuries but because I knew an era of my life was coming to an end. I recognized that moving forward, I would have no choice but to allow others to assist me with daily living.

Can you pinpoint the exact time and date you realized it was time to ask for help with something? Do you know the precise instant you decided to stop worrying about making the ask and allowed yourself to expose your vulnerability?

A year ago, I received an invitation to speak at a conference in Tasmania, Australia. I jumped at the opportunity without thinking it through completely. Once the euphoria settled, I realized the only way I would be able to afford to bring a personal assistant with me was to ask those in my circle of support to help me financially. For months, I agonized and worried about how to make this request, what method of communication would be best, the message to convey.

Eventually, I bit the bullet and created a crowdfunding page. I spent a few hours writing my message and then sent it out to the world. Within four weeks, I had achieved my goal. The messages of support from family, friends and complete strangers were overwhelming, causing me to cry with gratitude almost daily. People had been waiting for me to ask and were glad I finally let them help.

It never occurred to me that others could anticipate and see my needs before I was ready to ask. Instead, I put myself through months of fits of anxiety and useless worry. I could have saved myself so much wasted energy if I had just had faith that when I asked, those around me would answer my request.

Last weekend, I received a message from my friend Crystal. Crystal has been a generous mentor to me on my writing journey, offering encouragement and support on days I have had questions and doubt. I grow and learn by reading her work on a regular basis. As can happen, she is feeling overwhelmed by life events. Crystal bravely reached out to her circle of support to explain her situation and make her requests, hoping we would help alleviate her stress. We all responded positively and by the end of the weekend, most of her requests were met. As friends, we can’t take away all of her concerns, but knowing we can help with some is gratifying to those who care about her (at least, it is to me).

Crystal wrote about her thoughts on “the ask” in a lovely post you should go read. She ends the post by describing the joy which can be found in giving, summing it up with this apt thought:

When we can’t fix what’s wrong, but we can help to ease a burden, it brings a particular joy which can neither be measured nor duplicated. It’s one of the mysteries for which logic is useless.

I hope we have all felt that joy. I know it is one of the reasons I find it rewarding to help others when I am able. I strive to express my gratitude and joy to others when they respond positively to my requests for assistance.

Asking for help is difficult because it requires us to expose our vulnerabilities. But in asking for help, we allow those who care about us the opportunity to experience the joy of giving. Why would we deny those who care about us the gift of that joy which can be found in selfless giving?

Maybe we can remember that joy the next time we find ourselves anxious to make the ask. Yes, asking can be scary, but allowing others the gift of giving brings blessings to both parties involved. Thank you Crystal for giving me the opportunity to create and feel the joy this week.Rainbow

Has anxiety prevented you from making an ask? How have you felt when you have helped fulfill someone else’s ask?  

Share your thoughts in the comments!

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…..

 

 

Redefining Disability Challenge – Question 13

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirteenth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.

Here is this week’s question:

Describe a bad day in relation to the ways your life is affected by disability.

Last week when writing about good days, I referenced a post written by Christine Miserandino. I used the “spoon post” to explain my process of energy conservation. You can find her explanation here. If you didn’t read it last week, I urge you to take the time to read it now.

Christine’s theory uses spoons as a metaphor for energy. Every day you are given a set amount of spoons to use. The number may vary based on how your body is functioning on a given day. Each daily task you perform requires you to use one or more spoons. You have to accomplish certain tasks, no matter how many spoons you have, so you make choices and sacrifices based on your energy levels.

Monday when I woke up, I knew I would not have enough spoons to get through the day. Monday was what I call a “bad energy day.” To illustrate how this played out in my decision making process and choices, let me take you through my morning two days ago:

5:30 AM – Alarm clock goes off. I have a headache because I dozed for a bit without my bi-pap machine after waking naturally at 4:45 and the oxygen level in my blood is low. I try to move my arm to push off the blankets but the muscles in my arm don’t react to the message I am sending them. My arm falls limply and I sigh. I know already this is not going to be a good energy day. My Personal Assistant (PA) helps me sit up but I fall back against the pillow because my muscles aren’t responding when I tell them to contract and hold my torso upright. I curse under my breath. I don’t have time for this. I am supposed to be out of the house by 7:45 AM because I am working part of the day at Legislative Disability Awareness Day at the New York State Assembly and I am scheduled to meet my colleague, Melissa, at 8:30 in downtown Albany.

Total spoons available today: 30 

5:40 AM – Transfer onto the toilet. My ankles are swollen because I got to bed late last night and didn’t spend enough time out of my wheelchair so the fluid has not gone down. Extra fluid means extra weight. The extra weight will make every future transfer take more energy today. I think about this in my head and ask my PA to get me a granola bar as I mentally adjust my schedule. I eat the granola bar as I sit on the toilet, and send a quick text to Melissa to let her know I may be late. I’m sure others do not have breakfast in this manner, but I have to eat something and this is the only time to do it.

Total spoons used: 3; 27 remaining

6:00 AM – I consider skipping a shower. If I skip the shower, I would need to shower after work. If I don’t have the energy now, I know I won’t have it later. I also don’t know who is going to be working at night because the PA who is scheduled to work sent me a text late last night from the emergency room. She dropped a frozen chicken on her foot, potentially breaking bones. I decide to shower and my PA helps me transfer onto the bench. I can’t lift my leg over the side of the tub as usual so my PA helps me move. Showering takes longer because my tired body does not want to rush. I let my PA help me more than normal because it is taking far too much energy to maintain my balance on the tub transfer bench, let alone attempt to bend over and soap up my legs.

Total spoons used: 4; 23 remaining

6:50 AM – It’s time to get dressed. I have to wear a dress for work because of the event I’ll be attending. Transferring in and out of my van seat wearing a dress takes more energy than when I am wearing pants. I consider wearing pants as a concession but the forecast is for a hot, humid day and the air conditioning in my van is not working. A dress will be cooler, even though transfers will take me at least five minutes longer than usual.

Total spoons used: 3; 20 remaning

7:20 AM – My PA has to blow dry and brush my hair because I don’t have the strength to hold up the hair dryer. I decide not to attempt full make up. Lipstick will suffice.

Total spoons used: 1; 19 remaining

7:53 AM – I am in my van, about to pull out of my parking space. I am only seven minutes late, which I consider pretty amazing.

Total spoons used: 3; 16 remaining and I am just leaving the house

8:33 AM – I smile to the parking lot attendant and ask for assistance taking the parking ticket out of the machine. I don’t have the strength to reach for and pull the ticket. The attendant grumbles something to me which sounds like, “I’m so tired today and now I have to help you.” Those may not have been her exact words, but that was the meaning. I smile and thank her sweetly for her assistance, while the voice in my head is cursing her out. I snag a parking spot right next to the elevators and commend myself for arriving at my destination relatively on time. Melissa is already there and I have her assist me after I transfer back in my wheelchair by lifting my heavy legs so I can re-position my dress. She is used to helping prevent wardrobe malfunctions and I warn her about my lack of energy this day.

Total spoons used: 2; 14 remaining

8:45 AM – We approach the security checkpoint at the entrance to the Capitol and Legislative Office Building. I have to place my keys, purse and cell phone in the x-ray bin. I use my right arm to lever my left arm up to drop each item in one by one. After wheeling through the barricade, I must attempt to lift my arms and lean forward so they can wand me down for contraband I might be hiding on my body. I’m already wondering if I absolutely must go to the office after this event ends or if I will be able to just go home.

Total spoons used: 1; 13 remaining

I wish I could tell you my energy level improved as the day went on, but it did not. There were great moments during the day which energized my spirit, but my body did not respond in kind. By 2:30 PM when we were headed to the office, I knew I had about thirteen spoons left in my reserves and at least twenty spoons worth of tasks left.

I share this with you to show how I adjust my day based on my energy level, not in any attempt to impress you with my strength and determination. I talk about good and bad energy days, but rarely explain in detail what I mean by those terms. There are a few friends and family members who have seen me break down on bad energy days but that vulnerability is something I prefer to keep hidden from others.

I have often said we all make choices as we move through our lives. My choices may not be the same as yours, but they are the choices which allow me to live as independently as possible with a body which occasionally rebels.

All of us are given a set of spoons each day. How do you use yours?

 

Prove It!

Monday afternoon, I glanced at Facebook while eating my lunch. A friend of mine who also uses a wheelchair had posted the following, which I am sharing with his permission. I have edited to protect the privacy of everyone involved:

“I just received word that my formal medical appeal to my insurance for my wheelchair has been approved. A bit of history:

I took delivery of my custom ultralight wheelchair last July. My claim was denied by insurance as the wheelchair was deemed medically unnecessary. My provider has been amazing in not sending this to collections and working with me on the $8,000 outstanding bill, even though the invoice is now 9 months old. They have held billing as they knew it was in appeal, and have not sent me past due notices.

With the help of a retained third party, I sent my insurer a packet of medical documentation (over an inch thick!) and crafted a letter with professional legalese accompanying the documentation explaining the provisions they needed to follow, and demanding a neutral board certified neurologist familiar with my condition assess the records.

Thirty days after receiving my letter, they decided they are going to pay after all. I’m grateful for all of the assistance of my third party advocate (he is a former claim reviewer, an attorney, and I could not have done it without him, truly), my equipment provider for holding onto the billing, and my physician office in assisting with medical documentation.

HOWEVER…I am very saddened and disappointed by the state of our healthcare reimbursement system. This is my EIGHTH ultralight chair, I have an incurable genetic condition, and will not see a cure in my lifetime. It is not like my need has, or will ever, change. It took all of my brain power to navigate the spaghetti of the appeal process, and I have three college degrees, am a business executive, and have over six years of experience managing medical insurance programs at large Fortune 500 companies.

If it has taken me nine months, and the assistance of outside professionals, while personally quarterbacking all of the players, what hope does the average person on the street have?

I’m very grateful by the resolution, it’s a great start to the week. I’m a bit disheartened though, as I’m reminded there are many people, with needs far greater than mine, facing equally complex up hill battles, but with not nearly the resources I can bring to bear to resolve them. What of their needs?”

His post struck a chord with me because my Monday morning started with a trip to the doctor. Not because I was sick – well, that’s really not true. I was sick last week and spent several days home in bed with a bad cold and laryngitis. But on Monday morning, I was feeling the best I had felt in a week.

The trip to the doctor was made for one reason: the government made me go. The government makes me go to the doctor every six months to prove I still have a disability.

I rely on a Medicaid-funded (read: funded by tax dollars) program for the personal care I require to live independently in the community. Since I use a publicly-funded program, there are rules. One of the rules requires me to see my doctor every six months. I call it the “prove I’m still disabled” appointment.

I go to the local medical center. I always make an early morning appointment so I can go before work when I have more energy. The nurse takes my blood pressure (114/74) and my temperature (97.4 F), talks to me about preventive screenings and verifies my information is still accurate. The doctor comes in and asks me if anything has changed since my last visit. We discuss life and my health. Monday we talked about Australia. She takes the form certifying my continued need for home care and asks when the completed form must be returned to the local Department of Social Services. During the October visit she performs my annual physical. I make an appointment to return in six months and leave for work.

Every. Six. Months. Whether or not I am sick. Since I began using the program in 2008, I have never been sick for one of these visits.

I have a progressive neuromuscular disability. My need for continued home care has not magically gone away. There is no magic pill I can take to make my mobility impairment disappear. But I have to prove I need assistance and because I am dependent on the program, I resign myself to playing the game.

People with disabilities are used to justifying their needs for adaptive equipment, medical treatment and services. My friend had to prove his need for his specific wheelchair. I have had to do the same, and also justify my continued need for home care.

Why? I suspect it is because somewhere there are people who are telling lies and committing fraud. And the insurance companies are businesses that want to make a profit so they have decided they will save money by making it difficult to access care, services or technology. If they make it difficult and deny a claim, maybe the patient won’t appeal and will just pay it.

I don’t have data to back up that claim. It’s just my opinion, as someone experienced in the game. Much like my friend, I anticipate I will be required to prove my need. I give my doctors specific examples when we are discussing my care so they can use the language in their reports and letters. My friend engaged a third party to assist him in his appeal and it took him NINE MONTHS to get approval for his chair.

A wheelchair is not a toy. It is not an accessory which is convenient to have. Those of us who rely on Personal Assistants literally cannot live or function without them.

My friend’s insurance company thought his independence was not worth $8,000. If my friend does not have access to the chair he needs, he will not work, he will not independently go shopping, do his laundry, make his own meals or any other activity of daily living.

The invoice for my wheelchair listed the value at $33,647. I am pretty sure my insurance company paid a reduced price, but I’m guessing it was still over $20,000.

What is your independence worth? Can you put a price tag on it? Can you prove you deserve it? Should you have to?

Redefining Disability Challenge – Question 7

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the seventh question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

Is your work or school life affected by disability? Describe some of these challenges.

Last week I wrote about how my dependence on a publicly funded program for personal care impacts my financial situation and my ability to earn money. To answer this week’s challenge, I will write about my educational experiences as a student with a disability and how my professional choices have been influenced by my disability.

In the United States, all children with disabilities are entitled to receive a free and appropriate education in the least restrictive environment. I was one of the first students with a mobility impairment to attend my small hometown school. My parents advocated for my right to be mainstreamed, rather than receive my education in a self-contained classroom for children with disabilities. I received all of my education in the same classroom as my peers, with the exception of the classes I attended with the other students who were part of the gifted and talented program.

All students with disabilities have Individualized Education Programs (IEP). The IEP is the plan which contains the goals and objectives for a student. Because I had an orthopedic impairment, my IEP had goals related to my physical disability as well as my academic performance. The IEP is developed by the Special Education Committee – professionals involved in the education of students with disabilities.

When I was in eighth grade, my mother began to involve me in my IEP meetings. I read my IEP and the reports from the teachers, school psychologist and physical therapist. I attended some of my IEP meetings in high school where we discussed goals and objectives. Back in the late 1980’s, involving the student in what is now called “transition planning” was a new concept. Thankfully, more and more students are becoming involved in these meetings. My mother’s reasons for including me were simple – it was my plan, my education, and my future so I ought to have a say in the discussions. I remain eternally grateful for her early advocacy to include me in planning for my future.

From the day I started kindergarten at four years of age, I knew my parents expected me to do well in school, graduate, and attend college. There was never a question about my ability to do this.  I remember having a conversation about school with my father just before I stated second grade. He told me, “Denise, you’ll never be able to earn a living doing physical labor, so you have to continue to do well in school. Develop your brain so you can find a job where you can use your intelligence instead of your muscles.” Because my parents and teachers expected me to do well and continue my studies, I expected it for myself. Everything I did in high school was meant to prepare me for further education.

Early in high school, I began to explore colleges and universities. My grades and academic success meant several schools approached me but I was selective in my search. I wanted to attend a small liberal arts college where I would be able to make myself part of a campus community. I did not want to attend a large public university where I would be just a number. I needed to find a school where I would be recognized as Denise, not just another student in the back of a lecture hall. I also needed a small campus which was accessible.

The minute I stepped out of the car in the parking lot at The College of Saint Rose, I knew I had found my next home. At the end of our visit and tour, I told my parents this was the school I was going to attend. They were nervous, and asked how I could be certain when we hadn’t visited any other schools. But I knew St. Rose had everything I wanted. It was accessible, small, academically strong in my chosen course of study, and everyone we met that day had been friendly. I applied for early acceptance, not even considering a plan B in case they didn’t accept me. I was going to St. Rose.

Thankfully, they accepted me because I never did apply to another college before I left for my exchange student year. I started St. Rose excited to throw myself into the college experience. I took full advantage of the state vocational rehabilitation programs which offered assistance for students with disabilities. Book scholarships, tuition assistance, personal care assistance – all helped me fully participate in secondary education. I did not require classroom modifications other than the occasional assistance moving a desk or chair when I had to make a presentation. When it came time for me to complete my student teaching and clinical practicum, the placement office worked with me to locate accessible sites.

I have remained employed full time since completing my graduate degree in 1996. My occupations have always been tied to disability in some way. Disability is my life. My years working as a speech-language pathologist allowed me to help others with disabilities in meaningful ways. When I decided to leave clinical life, I tried cubicle work in an office. But I am too strong of an ESFJ personality to work in a cube farm.

My employment experience is not typical for adults with disabilities. According to the 2012 American Community Survey (the most recent data on their website) only twenty percent of non-institutionalized persons with disabilities aged 21-64 in the United States were employed full time for a full year. The percentage for women aged 21-64 years is even less – fourteen percent.

There are many reasons for the disparities but I am an outlier because those who influenced my education expected me to succeed. I wrote about this last year in a blog post for the US Department of Labor, Office of Disability Employment Disability.Blog. I was empowered by those who did not see my disability as an educational or vocational barrier.

I will continue to work as long as I am physically able. The financial realities I wrote of last week for this challenge limit my ability to accrue assets, making continued employment a necessity. My current job allows me to combine my passion and advocacy with my skills as a communicator. The taxpayers spent too much money getting me educated to have me stop working now after just twenty years! I owe it to them to use that education in an occupation serving others for as long as I can.

Redefining Disability Challenge – Question 6

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the sixth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

Are your activities of daily living affected by disability? If you’re comfortable, share a little of your daily routine.

I’ve written before about how my disability impacts my activities of daily living and my need to employ Personal Assistants (PAs). Last October I wrote a guest post for the AbleBodies blog describing how I “manage” living with my disability. The post is one of the most honest and blunt descriptions I have ever written about something many wheelchair users refer to as “pee math.” Please, click this link and read it now if you want to learn more. You can read about my daily routine in this post, and in this post you learn why I call myself the “CEO of Me.”

I don’t want to repeat what I have already written so I will use this week to speak about the financial reality of life as a person with a disability. I am writing from the perspective of someone who lives with a disability in the United States. I cannot presume to speak for others, and I am only presenting my experiences. I am not writing as an employee or agent of my employer, a nonprofit disability related organization. The views and opinions below are mine. The programs I am going to discuss are government programs, thus they have acronyms and abbreviations. I am using these, but I will define each of them.

To help explain my reality, it helps if I talk a bit about long term care (LTC). The United States Department of Health and Human Services has useful basic information about LTC on their website and it is written in plain language. You can find links to your state (if you are in the USA) and you can also find information about other topics such as considerations for LGBT adults and adults with Alzheimer’s.

LTC refers to the services and supports a person requires to meet personal care needs. This includes help with tasks known as Activities of Daily Living (ADLs) such as bathing, toileting and grooming, as well as tasks known as Instrumental Activities of Daily Living (IADLs). These tasks are the skills needed to successfully live independently, such as doing laundry, preparing food, shopping and housework. Since most LTC is related to assistance with ADLs and IADLs, it is not considered “skilled medical care.” Often this help is performed by unpaid family caregivers. According to the US Administration on Aging, unpaid caregivers provide almost eighty percent of LTC in this country. The average unpaid caregiver spends twenty hours per week providing this assistance. Twenty hours – it’s like having an unpaid part time job in addition to all your other work and family responsibilities.

There are several common misconceptions about who pays for LTC in the United States. Medicare DOES NOT pay for extended LTC. Medicare WILL pay for skilled nursing services, or rehabilitative care but generally only for a short period of time. Medicare DOES NOT pay for what is considered “non-skilled” assistance with ADLs or IADLs, which as I said before is the majority of LTC. Private health insurance, like the insurance provided by my employer, DOES NOT pay for extended LTC.

What pays for extended (longer than 120 days) LTC? Medicaid is the public option used by most people with disabilities. There are some public programs through the Department of Veteran’s Affairs or local Offices for the Aging which pay for LTC in certain populations. There are private options such as LTC insurance and annuities. I am not an expert on these and I encourage you to do your research if you feel these may be options for you as the rules for eligibility and cost vary. I know Medicaid as this is the program I have used since 2008 to obtain the services I require.

Medicaid eligibility is based on income. Each state administers Medicaid differently, so you must meet the minimum eligibility requirements in your state to qualify for services. I complain about the winter, snow and cold in New York often enough to cause people to ask me frequently why I don’t just move. The answer is simple. I stay in New York because of the relatively generous Medicaid program which pays for my LTC. I qualify for LTC through a New York State Medicaid program called the Medicaid Buy-In Program for Working People with Disabilities (MBIWPD). This program allows working New Yorkers with disabilities to earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage. Forty-five states have buy-in programs and the eligibility guidelines and rules vary by state. I will explain how I benefit from MBIWPD after I talk about Medicaid eligibility and how the rules force people with disabilities to live in poverty.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. 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. That is a difference of $518 less per month, or $6,205 less per year, due to disability.

Let me repeat that so it’s clear. To qualify for Medicaid in my state, a person with a disability is allowed to earn up to $825 per month, $518 less per month than a person without a disability.  My rent is more than $825 per month. Let’s not even discuss food, the loan for my accessible vehicle, or any other expenses. I could not live the life I lead now on $825 per month. How would you survive if your income was limited to $825 per month? What changes would you have to make?

There is a reason many disability advocates talk about people with disabilities being forced by “the system” to live a life in poverty. For many, Medicaid is the only option. Medicaid pays for goods and services people with disabilities rely on and is often the only public funding source available to provide these necessary items. Living with a disability is expensive and most people would not be able to afford care without Medicaid. Have you priced wheelchairs? The price listed on the invoice for my power wheelchair, purchased in 2012, was $33,648. And my chair only elevates, it does not tilt or recline. It also doesn’t drive me to work, or protect me in a high speed crash, like a car at half that price would. I am authorized to receive 49 hours of personal care each week. If I were to pay out of pocket for this care, it would cost approximately $20/hour. That is $980 each week, or $50,960 a year. If you were dependent on medical equipment and personal care, would you jeopardize your eligibility for the program which provides these necessities? Or would you continue on just so you have access to required care?

People with disabilities become trapped in poverty because of another reason – the asset limitation. To qualify for Medicaid, a person cannot posses personal liquid assets of more than $2000. In my bank account, at this very minute, I have $789. If my accessible van breaks down tomorrow and requires any repairs, I have no choice but to put the repairs on my credit card and pay it off a little at a time because I have no access to a rainy day or emergency fund. In 2013, 29 percent of adults with disabilities lived in poverty – twice the rate of the general population. It is hard to break out of poverty if one is never permitted to acquire assets.

Earlier, I said I benefit from the New York MBIWPD. As a single person receiving services through this program in my state, I can earn up to approximately $59,000 annually (the exact amount changes each year and is different for married individuals) 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 and Medicaid pays for the personal care I need to remain an active member in my community.

I am grateful to have a program like the MBIWPD but using such a program comes with trade-offs. Every six months, even though I’m not sick, I must appear in person in front of my doctor so she can make sure I’m still disabled and still require personal assistance. I have had a progressive neuromuscular disease since birth, but every six months the government requires my doctor to verify some miracle hasn’t happened which would eliminate my need for care. After my doctor verifies my continued need for home care, a nurse and social worker visit me at home to assess my ability to be self-directing and to determine the number of hours of care I require. I understand my care is paid for with taxpayer money, and there must be a system to ensure the funds are not used inappropriately. Forcing me to go to a doctor, and spend taxpayer money on a doctor visit I don’t need, particularly when my disability is not going to disappear, seems like a waste.

But I play the game because I need the assistance. I grit my teeth and smile at the nurse and social worker when they ask me patronizing questions (or call me inspirational) because they are the gate keepers. They determine how many hours of personal care will be authorized. That’s the reality I live with until the regulations change or until I come into an unexpected and extended windfall of money. I accept this is the way things have to be, and I just do what needs to be done. I am a single woman who was told from an early age, “You’ll have to do well in school so you can grow up, get a good job and be able to take care of yourself Denise, without relying on anyone else to support you.” I followed those directions, went to college, got a Masters degree and have supported myself since 1996. Now, I work in a job which I enjoy, but where I earn significantly less than others with the same educational and professional background so I will qualify for the services I need. Do I like having to play the game? No. I continue to play because it’s the only way I can keep living the life I want to lead.