Lilianna grabbed the company laptop out of her leather briefcase and blew her nose. She was early for her first appointment and decided to review her notes before knocking on the door to the duplex that sat one hundred feet beside her. She had to pee. She always had to pee when nervous, and since this was her first day on the job as a case manager for Visions of Ability, she knew that she was probably going to spend half of it in the bathroom. She gazed longingly behind her at the package of Depends undergarments in her Honda Fit’s backseat. Those were meant for the next consumer on her list to visit today. She was tempted to grab one out of the package, but Lilianna guessed that it probably wouldn’t be too professional or comfortable to spend her morning peeing in a diaper. She would have to probably just woman-up and ask this first consumer if she could use her bathroom.
The consumer, according to the paperwork and her boss’s notes, was up for her annual reevaluation of personal care attendant services under a state-funded Medicaid waiver for working adults. Well, that’s pretty cool, Lilianna thought. This one has a job. Maybe she works at one of those workshops where people with disabilities get paid a few dollars an hour to put together binders or wrap plastic utensils? Oh wait. Lilianna scrolled down the page a bit more. This one has a, “progressive, genetic, neuromuscular disease”, “Spinal Muscular Atrophy”, with “normal intellectual functioning”. The doctor’s letter stated that the “consumer” was “non-weight bearing”, had “40% vital lung capacity” and “required full assistance for most activities of daily living (dressing, transfer, positioning, grooming, toileting, meal preparation, laundry).” Man, she thought. She can barely breathe or move. Guess she ain’t working in one of those workshops.
The alarm on Lilianna’s phone went off. In two minutes she would need to be at Constance Mumford’s front door. Right on time. This was one of Visions of Ability’s consumer satisfaction promises. Her boss had mentioned to her that consumers complained in the not so recent past about case managers showing up thirty-minutes to four hours late to meet with clients.
“I don’t really get it,” her supervisor confessed, “it’s not like these people have much going on in their lives.”
Her supervisor explained that most of the consumers on Lilianna’s caseload were elderly and some were even “vegetables". Lilianna looked down at her lap when her boss said that. This went completely against her graduate thesis on Person-First Language in Social Work. She was kind of surprised that the director of Visions of Ability could even utter the word “vegetable” in front of a new case manager.
Lilianna gathered her briefcase and made sure that the sixty-page manual and packet of forms were included. She needed to make sure that all this paperwork was signed within the hour. Lillian figured she’d spend about ten minutes making small talk, thirty minutes going through the packet, and maybe twenty minutes or so doing the assessment.
Knock. Knock. Knock.
“Hold on!” The voice behind the door was strained and had a bit of a phlegmy gurgle to it. Lilianna had an urge to clear her throat. She heard a lot of commotion.
“Do you need help? This is Lilianna Steck from Visions of Ability.”
“Hold on!” Scraping noise. “Dammit! Okay! Yeah, come on in.”
Lilianna grabbed the door handle and held her breath in anticipation. The urge to pee came back with a vengeance. The door creaked open and before her sat a person she recognized.
Her first thought was Sally. Sally was an acquaintance from high school who died a few years before. Sally was a Jerry’s Kid.
But this girl wasn’t Sally. This was Constance Mumford, who sat upright in her power wheelchair wearing a pair of cut-off jean shorts that showed off her pale bony legs, and a thin baby blue t-shirt that showed off her pale bony arms. Her gorgeous mane of thick, curly, long hair and eye-makeup made her think of some kind of beautiful, doll-like, bobblehead. While her high school friend, Sally, was very conservative in appearance, Constance had a nose stud and a wheelchair heart tattoo on her lower forearm. Despite some differences in style, Constance’s frame and movements were identical to Sally’s. They could have been sisters.
She entered an open living area that included a small kitchenette. The living area had a big window, which faced the street. Constance’s desk and laptop sat under the window and next to a huge bookshelf. Lilianna instantly recognized a few of Constance’s textbooks on counseling techniques. When she looked up from the shelf, she saw two framed degrees. The master’s degree was from Lilianna’s alma mater.
Lilianna extended her hand forward and Constance just looked at it and smiled. Constance leaned over a bit and thrust her left hand forward using her right hand to steady it. She was poised to shake hands, but Lilianna would have to do the work to make it happen. She did. Constance’s hand felt boneless and soft, but the determined look on her face conveyed nothing boneless or soft about her character.
“I’m Lilianna Steck.”
“I’m Constance. Do you want to -”
Hey, I’m so sorry about this, but can I borrow your bathroom?“
"Oh, yeah, sure. You’ll need to go through the bedroom. You may have to move the shower chair out of the way, but go for it."
Constance spun her wheelchair around pointing it in the direction of where to go.
Lilianna thanked Constance, put her briefcase on a futon, and headed toward the door. The first thing she noticed was that there wasn’t a door on the bathroom. It had obviously been modified to fit Constance’s equipment. In order to get privacy, she had to shut the main bedroom door. Constance’s shower chair sat covered by a wet towel. The cupboards in the bathroom had dents and scratches all over them. Not much room for storage existed. As Lilianna peed, she noticed a packet of birth control pills on the dresser in the bedroom and a nebulizer on a shelf next to a twin-sized hospital bed. Sex and breathing. Similar priorities, she thought. Makes sense.
Pulled up to a fold out table in the kitchen area, Constance looked up and smiled as Lilianna came out of the bedroom. "Shall we do this here?”
“Let’s.” Lilianna grabbed her briefcase with the paperwork and her laptop and carried it over to the table with a plastic chair. She sat down. Her mind went blank for a second and then she remembered to build rapport. “Thanks again for letting me use your bathroom.”
“Sure thing. Anytime. Would you like something to drink or eat? There are some peanut butter cookies over there on the counter.”
Constance turned her power wheelchair in the direction of kitchen.
“Oh, no thank you. Visions won’t allow me to accept food or drink from consumers. Plus, I have a pretty severe nut allergy.”
“Oh, that sucks.”
“It’s okay. I’ve just had to learn to adapt over the years, but I’m sure you get that,” Lilianna smiled bravely like she used to for the doctors.
“Yep, we’re exactly alike. So how long do you think this is going to take?” Constance asked and looked up at the digital clock sitting on her fridge.
“About an hour. We have some paperwork to fill out; I have to review the rules on the Consumer Directed Services option; and then we do our needs assessment.”
“Oh, okay, the woman on the phone said it would take twenty minutes. I’ll have to text my attendant and let her know to wait.”
“I’m sorry. I’ll try to rush through this.” She could feel Constance’s frustration and Lilianna wondered who at Visions told her that it would take twenty minutes. Screw rapport building. Lilianna grabbed the paperwork and they quickly went through the preliminary stuff. A lot of pointing and signing and pointing and signing until they got to the emergency back-up form.
“Okay, so here you need to list three emergency contacts to call if your attendant doesn’t show up."
Lilianna pointed to the area on the form where the consumer was to write in her contacts.
"Wait. I thought that this is consumer directed?”
“So why do I need to tell you who my emergency contacts are?” Constance looked irritated and Lilianna honestly didn’t prepare for the question. She was told that some people may not have emergency contacts and that was a good sign that they wouldn’t be the right fit for the consumer directed model, where consumers hire, manage and fire their own employees, but that wasn’t the question Constance was asking.
“Do you not have emergency back-up?”
“Is it your business if I don’t?”
“This form is required by the Medicaid waiver program. If you do not have three back-up contacts, you may not be a good candidate for this program and -”
“I have back-up. Of course I have back-up. I’m sorry, but it seems futile to have to explain my plan for back-up if nothing is going to be done on your end if I end up in an emergency anyway since it’s consumer directed. It just seems a bit silly and Big Brother like - that’s all. Sorry. I’ll give you the contacts.”
“You can just put your parents names down or siblings,”
Constance laughed. Her voice twisted like her spine. “My mommy and daddy?”
Lilianna felt the urge to pee again. “Well, whomever.”
“My parents live two-thousand miles away. I moved here for graduate school. My sister is still in high school and she’s just as crippled as I am, so I doubt she’d make a good back-up.”
Lilianna just stared at her. What was she sorry for? Maybe it was because Constance’s parents were so far away and she was obviously pretty feeble to be without support. Maybe it was because her sister also had a disability. That must have been so hard for her poor parents.
"I’m sorry that you are here without your family.”
“Most of our consumers have support from their families.”
“Like what kind of support?” Constance asked.
This back and forth was starting to make Lilianna dizzy and feel defensive.
“Well, like if there’s an emergency. A family member can get them out of bed, help them eat, that kind of thing.” Lilliana felt like she gave the right answer, but Constance didn’t look pleased.
"Is that the same support you get from your family as a woman in her twenties?”
Lilianna sat dumbfounded. Why was this chick always throwing questions back at her?
"No, but I don’t have a disabil— I mean a physical challenge.” She knew that Constance probably wouldn’t have appreciated the political correction like her professors would have.
“So you’re saying that that’s my family’s job - to be enslaved to do my care for the rest of their lives?” Constance’s doll-eyes got big.
“I’m not saying that!” Lilianna’s voice cracked.
Constance smiled. She pulled out her phone and motioned for the form.
“Look, I’m sorry. I’ll list three friends. Let’s just get this done.”
Lilianna was sweating. This very fragile girl in front of her intimidated her. She fumbled a bit as she went through more forms. They finally got to the nitty-gritty of the paperwork after a few minutes. It took time for Constance to write the contacts on the form. It seemed to require every inch of her body to move her pen along the paper. Her breathing even changed. Constance’s handwriting was labored, messy, and Lilianna knew that this wasn’t because she was careless or unable to make words. She was just weak.
“So now I have to ask you a series of questions about your activities of daily living for this formula sheet.”
Lilianna pulled out the form and Constance’s facial expression went hard again.
"Formula sheet? There’s a formula?”
“Yes, a formula. The state has strict rules pertaining to how much care someone can receive in the home.”
“What about my doctor’s recommendation?”
Constance pointed to her file that had copies of all the paperwork she had given to Medicaid.
"Well, most doctors want to give their patients everything and the kitchen sink.” Constance blinked and immediately Lilianna could feel the claws come out.
“So you’re saying that the State knows more about my care than my doctor who I’ve seen for years?”
Lilianna knew where this was going.
“Look, Constance. I don’t make the rules, okay? I just have to get this paperwork done. There’s no point in arguing.”
“I need significant hours,” Constance’s strained voice rose and shook. “I could die without significant hours!“
"Well, if you need that many hours how can you work? How can you live in this apartment?”
"You seriously just asked me that. How dare you suggest what I think you’re trying to suggest? Do you see the degrees from Cornell and Rice on the wall behind you? Do you think I deserve to be put in a nursing home? Don’t you get it?”
“I’m sorry. It’s none of my business.” Lilianna wanted to cry and pee at the same time.
“Just ask me the first goddamn question.“
She read the first question on the assessment form that was both in English and Spanish.
"Do you have any problems taking a bath or shower?” Lilianna asked.
“I do. I can’t take a bath or shower independently.”
“Do you shower everyday?”
“I do. Do you?”
Lilianna ignored her question and filled in the formula. Seven days per week, forty-five minutes per day.
"It takes me longer than forty-five minutes in the shower. It takes me at least an hour and fifteen minutes, and that’s on a good day.”
“I’m sorry, that’s the maximum.”
Constance rolled her eyes and then stopped making eye contact for the next few questions. She answered with a flat disassociated tone, and Lilianna awarded maximum minutes based on her answers.
Thirty minutes per day to get dressed.
Twenty minutes per day to eat.
There were no minutes for grooming.
“Wait. You can’t give me minutes for teeth brushing, shampooing, and combing my hair?”
“As I said, I don’t make the rules.”
“How long does it take you to do your hair in the morning?”
Lilianna thought about the time she spent straightening her hair and putting on her makeup. She was also a religious flosser.
“It takes a while,” she answered honestly, but she didn’t know exactly how long because she never had to count the minutes.
“So according to the State, I am just supposed to have bad breath and uncombed dirty hair?”
“Let’s move on.”
Constance didn’t complain about the thirty minutes for shaving, oral care, and nail care per day, or another forty-five minutes for routine hair and skin care.
“What’s the difference between routine hair care and combed hair? And what’s the difference between brushing my teeth and oral care? Who the hell came up with this stupid form?”
“I really don’t know.”
“Well, they suck.”
“Do you have problems getting to the bathroom and using the toilet?”
“What do you think?”
Constance smiled. Lilianna put in the max time of twenty minutes per day.
“Wait. Wait. Wait. Hold up. Twenty minutes! I get twenty minutes to use the bathroom?”
“Yes. That’s what it says. That’s the maximum”
“How many times per day do you go to the bathroom?” Constance scoffed.
“I go around six times.”
“I go three if I’m lucky, but I’d like to go six. And each time it takes me at least thirty minutes. Do you know how much it sucks to have to hold your pee for eight hours at a time? Can you imagine taking a shit on a schedule? I’m not telling you this to feel sorry for me, but this is fucking ridiculous.”
“It is ridiculous. I’m sorry, Constance.”
“Just call me Incontinence Constance.”
They both broke into hysterical laughter.
“I have some Depends out in the car!” Lilianna blurted out as she cried and caught her breath.
“Shut up!“ They both looked at each other and their smiles stopped. Lilliana wiped the tears from her face with the back of her sweater sleeve. The guilt returned like a heavy blanket being thrown at her from across the room.
By the time the needs assessment concluded, Constance had a total of 2620 minutes of care per week, which added up to approximately forty-four hours.
"So there it is. You have a budget of about six hours per day,” Lilianna sighed. Her bladder was screaming for relief.
“What about turning at night? Is that on the list?”
“Yes, you know, moving in bed.”
“There are no hours for turning.”
“I can’t move. I’m not sure if you haven’t figured that out yet, but I can’t move at all. The doctor even wrote it right there if you don’t believe me.”
She pointed at her stack of documentation.
“Oh, I believe you.”
“So, you realize how dangerous this is to not be able to move at night? The pain, the cramping, the bed sores -“
“I get it.”
“No. You fucking don’t.”
Looking at Constance’s face, her doll-eyes widest of all with tears welling up in them, made Lilianna wish she never took this job. She wished she could quit right then and there. No one told her that this would be her fate at Visions of Ability, giving people like Constance only twenty minutes to use the bathroom per day and no help at night.
“How do you handle not turning right now?”
“Maybe I don’t handle it. Maybe I sleep in my wheelchair every night. Maybe I invite some guy over from Craigslist and do whatever it takes to get turned at night. Frankly, it’s none of your business because nothing would change if it were your business. The only way this is going to change is to end up so ill from neglect that I end up hospitalized. Don’t you see how messed up this is?” Two thick tears fell out of her doll eyes. “Don’t answer that. Where do I sign?”
Lilianna didn’t know what to say, so she just handed her the needs assessment form and Constance approved the forty-four hours per week. She really had to pee again.
“Constance. I’m so sorry, but -”
“It’s okay. It’s not your fault. I’m sorry for getting so angry. I’m just really-“
“I’m so sorry, but I have to use the bathroom again,”
Constance turned to stone.
“So do I.”
“Would you mind if I…”
“I can’t use your bathroom?”
“Nope. Sorry. You’re only allowed to go once every eight hours,” Constance said and wheeled over to the bedroom blocking the door with her power chair.
Lilliana gathered her papers and laptop, trying desperately to avoid eye contact with the consumer.
“Thank you for your time,” she said to Constance.
“See you next year if I’m still here,” Constance voice cracked.
When Lilianna got to back to her Honda Fit she about collapsed onto the ground. She could feel Constance’s eyes staring at her from the living room window. She opened the back door to the car and threw her briefcase onto the backseat. The Depends undergarments fell onto the ground. Lilianna left them behind and drove away.
Image Description: A picture of a form titled, “Needs Assessment Questionnaire and Task/Hour Guide” filled-in by hand with blue pen. Many of the questions from the story are listed on this form with the total minutes and hours reflecting the total minutes and hours in the story.