It’s not easy to live with another person. “Stuff” comes up, like privacy (“stay out of my stuff”), cleanliness (“pick up your stuff”), respect (“get that stuff outta my face”) and trust (“where’s my stuff?”).
Yet many people with physically disabling conditions find that living with a personal care attendant solves more “stuff” than it creates — critical stuff like needing reliable help getting in and out of bed, dressing, cooking, or going to the bathroom.
A live-in personal care attendant (PCA) — while not the right choice for everybody — is a good solution for many adults with neuromuscular diseases who want to:
The variety of live-in arrangements is limited only by imagination. Here are a few examples:
Armand Legault, who has spinal muscular atrophy type 2 (SMA), lived with his mother until she died in 1992. Then he bought a four-bedroom home in Newington, Conn., with the express purpose of sharing it.
“Outside PCAs have all these excuses why they can’t make it — snowstorms, traffic jams, children getting sick,” he explains. “But I don’t want excuses, I want to get up in the morning.”
Legault, 56, a former Connecticut Internal Revenue Service auditor, provides free housing to three individuals who also have outside jobs. Although he doesn’t pay salaries, he pays for a phone line, cable TV, Internet, utilities and groceries (if they eat what he eats, otherwise they buy their own) for each attendant — a package, with rent, he estimates is worth about $820 per person per month.
In return, they help him get up, toileted, bathed, dressed, and back into bed at night. They cook his meals, do his laundry, keep his house and yard tidy, and run small errands. They ensure someone is home whenever he’s in bed, and that he has coverage on the weekends. As spelled out in a detailed contract and monthly posted schedule, each person does from a half-hour to an hour and a half of direct, hands-on care or chores a day. (For more about contracts, see “Pros and Cons.”)
Because his live-ins enable him to work, he deducts some of the cost of their groceries and extra utilities on his income taxes, as an “impairment-related work expense.” Other expenses associated with live-ins also can be deducted as medical expenses, he advises. (For more information, contact your tax accountant, or check with Legault at firstname.lastname@example.org.)
Rent-free, plus a salary
Scott Bennett, 41, hired his first live-in as an 18-year-old Boston college student living in a two-bedroom government-subsidized apartment. He figured he was paying so little for rent it didn’t make sense to charge a roommate.
Besides free rent, Bennett, who has Duchenne muscular dystrophy, paid his live-ins the small amount that Medicaid allowed for overnight care (equal to two hours’ salary).
The system worked so well he continued it long after he graduated from college and became a software engineer for Mitre Corp. He’s had to hire only eight live-in PCAs since 1983 — as compared to more than 150 outside PCAs.
“Why the difference? It’s a better deal,” he explains. “Living rent-free in Boston is huge, because Boston is such an expensive city.”
Bennett, who bought a house in 1999, requires that his live-ins (he only has one at a time) pay half the cable TV bill and utilities, get their own phone lines and buy their own groceries.
In return for the free rent, they help put him to bed, stay home all night and occasionally help him turn over — or carry him from the building, as happened once when there was a fire in the elevator shaft. Bennett, who uses noninvasive ventilation, uses his Medicaid allocation to hire outside PCAs for the rest of his daily care: cooking, feeding him, shopping, laundry, hygiene, etc.
“As long as I’m up and in my wheelchair, they [live-ins] don’t have to be around,” he says, adding that he’ll pay them to do more personal care duties if they choose. “The best way to hang on to someone and have low turnover is to let them stay rent-free.”
|Regan Collier (right) goofs around with her friend and roommate/caregiver Joy Parker.|
Like many other roommates, Regan Collier, 21, and her friend Joy Parker, 26, have a lot of fun together, including attending the same church and going skydiving. Like most roommates, they split the rent and utilities for their apartment in Baton Rouge, La. But then the arrangement becomes a little more unusual.
Parker is paid (through a Medicaid waiver) to provide up to 16 hours a day of personal care assistance for Collier, who has Friedreich’s ataxia. She does all of Collier’s personal hygiene and grooming, transfers, laundry, dishes and vacuuming, and makes most of the meals.
It actually was Parker who suggested they live together, because she wanted to move out on her own. She already was working as Collier’s daytime PCA, driving her friend from her parents’ house to Louisiana State University, where Collier is a junior.
“I’ve never lived independently and it’s quite a stretch,” Collier says. “I actually don’t know what I’d do if I didn’t have a live-in arrangement. I consider myself extremely blessed that Joy has come into my life and I’m able to do this.”
Although the arrangement began informally, as is typical among friends, “we soon realized that wasn’t going to work,” Collier says. For example, they had differing ideas of when laundry and housekeeping chores should be done. Being a friend as well as an employer became kind of tricky.
“I don’t like conflict but I couldn’t expect my mother to step in, so I finally stepped out of my comfort zone and spoke up,” Collier says. “Joy handled it amazingly well, although we still have conversations about our differing ideas of clean.”
Karen (who asked that real names not be used in her story) has had amyotrophic lateral sclerosis (ALS) for 20 years. In her late 50s with grown children, she lives with her retired husband, Allen.
For years, Allen was her sole caregiver, with the exception of a couple of friends who came by a few hours a week. Karen requires total, round-the-clock care, and she realized Allen was burning out. He needed some help and a chance to get away.
“I didn’t want a business arrangement — an employer-employee relationship,” she says via e-mail. “I wanted an ‘extended family’ feel with someone who would simply pitch in and do what was needed.
“Since our daughters were out of the nest we had space for a live-in. It would offer us far more flexibility than an agency and be more affordable.”
Six years ago, Karen was considering checking with the local nursing schools when a casual friend mentioned she was getting divorced. Karen suggested she move in.
In exchange for free use of a bedroom, private bathroom, sitting room, garage space and full access to the kitchen and laundry, Peggy provides 12 to 14 hours of coverage a week, mainly during the evenings and on weekends. She also does part of the cooking, pays half the grocery bills, helps with laundry and yard work, and keeps the kitchen clean.
|Angela Wrigglesworth says she's had good luck asking friends to be her roommates/caregivers because they care about her and "are fun to be around."|
“Because she works fulltime, privacy has not been a problem,” Karen says. “My husband and I have weekdays to ourselves, and then she has her rooms upstairs to retreat to, so we aren’t in each other's faces all that much,”
But the situation isn’t ideal.
“Although the arrangement works, the personalities don’t always!” Karen says. She and Allen are “don’t-make-waves kind of people. [Peggy] … isn’t. That creates a level of stress — but so far not enough to make us want to find someone new and risk falling into something worse!”
In the big picture, the pluses outweigh the minuses, she says.
“This arrangement has worked out well for us, letting my husband bowl, golf, work out, etc., as well as providing very flexible help when big and little emergencies arise. “As I said, I wanted an extended family situation if possible. Well, we’ve got it, squabbles, moods and all!
“Like any family we have learned to tolerate each other’s faults and quirks, appreciate the good traits and not sweat the details.”
For many years, foreign students ages 18-26 have been permitted to spend up to a year in the United States serving as au pairs — live-in babysitters for young children (including children with disabilities).
Now legislation has been proposed that would allow these students to serve adults with disabilities, providing live-in personal care assistance for up to a year.
The Independent Living Assistance Access Act of 2005 (H.R. 3998) was introduced in April by Rep. Jim Cooper (D-Tenn.). It creates a new category of visa allowing foreign students to visit the United States for the purpose of helping disabled adults with bathing, dressing, shopping, meal preparation and routine household chores, but not medical care.
In the current au pair program, host families give students a stipend of about $140 a week, plus room and board, for up to 45 hours of child care a week. Students must be enrolled in an approved study exchange program and host families pay a portion of that cost. The academic requirement also is part of the Independent Living bill.
At press time, the bill (which has attracted bipartisan support) was lodged in the House Judiciary Committee’s Subcommittee on Immigration. Cooper’s office encourages interested citizens to contact their congressional representatives to urge support.
A similar bill was introduced in the House last year, but died in committee.
Having a successful relationship with a live-in personal care attendant is a balancing act. It takes both planning and instinct, both the flexibility to let go of old habits and the firmness to maintain clear boundaries about behaviors and expectations.
There are definite pros and cons to having a live-in personal care attendant (PCA), says Christine Gaynor, project coordinator of the Community-Integrated Personal Assistance Support Services (CPASS) program at the University of Connecticut Center on Disabilities in Farmington.
You can get consistent, reliable support, usually at a more affordable price, and a chance to make a lifelong friend. While it can be hard to find a male part-time PCA, more males seem to be willing to be live-in PCAs.
You risk entering a nightmare roommate situation, compounded by the fact that “now you have an adversarial relationship with someone you’re relying on for care,” Gaynor says.
What can go wrong
Therese Nadeau, 35, who has spinal muscular atrophy type 2 (SMA2), thought she’d love having a live-in because she enjoyed her college roommates so much, and because she’s a “people person.”
Instead, she discovered that the woman she hired through a newspaper ad was her opposite in personality and “wanted to control me."
“When she wanted to put me to bed I had to go to bed. She didn’t want to cook, so basically she made me the same thing every day. She didn’t allow me to have my choices. I felt like my house was not my house. I’m an easygoing person, so I didn’t know what to do with that.”
What Nadeau did was terminate the relationship after several months, and for the past three years she’s lived alone with her service dog, Sassy, relying on outside PCAs for care.
“I don’t think she knew what she was getting herself into,” Nadeau says of the live-in. “She basically needed a place to live right away. It’s really important to be careful.”
“Amen!” agree proponents of live-in care. Here are some ways to set yourself up for success:
Know and say what you need
The late June Price, in her book Avoiding Attendants from Hell: A Practical Guide to Finding, Hiring & Keeping Personal Care Attendants, advised making a complete list of your care needs, times you need help, and the kind of person and relationship that would suit you best. This allows you to target your search, and be very clear from the beginning about your expectations.
“The thing is, you can ask someone to do pretty much whatever it is you need,” advises Angela Wrigglesworth, 28, of Houston, who has SMA2. Wrigglesworth, an elementary school teacher, splits her rent with a good friend and uses Medicaid funds to pay the friend for personal care help.
“But you have to tell them from the beginning the possible things that they could be doing. Springing a new demand on someone out of the blue is not the best way to establish a good working relationship.”
If possible, try not to put too much responsibility on live-ins, using them primarily for overnight supervision, minimal care and as a backup when regular PCAs don’t show.
“If the live-in is doing all the personal care and all the household stuff, that can spell doom,” says Nadeau, of Glastonbury, Conn. “You’re spending so much time together that way. Then, if you’re upset with that person, you still have to ask them to put you to bed or take you to the bathroom. That doesn’t work out so well.”
Be up-front about the amount of private space available to the live-in — the more the better, such as a private bedroom, bath, kitchen cupboard, refrigerator shelf, phone line, etc.
“This makes them more comfortable and minimizes the usual roommate conflicts,” says Scott Bennett, 41, of Boston.
Also spell out any monetary compensation they can expect in return for their services.
The amount paid by Medicaid for in-home care varies greatly from state to state. The American Network of Community Options and Resources, an organization of providers offering supports to people with disabilities, says that in 2002 the median PCA wage was $7.97 an hour.
An excellent live-in could be a student, recent divorcee, retiree, or even someone just released from jail or rehab, says Jens Krause, who hires live-ins for Hope Services, a program serving people with developmental disabilities in San Jose, Calif.
The key is to know as much about the person as you can before committing. This can be partially achieved through interviewing and following up on references, but intuition also plays a part, Krause says.
“There’s something that has to come across in the way the person presents himself that makes me want to hire him.”
Bennett says a telling factor is how many questions the applicant asks him. Do they just want to know about the money and the hours, or are they truly interested in the job? He prefers to hire people who are training or working in the health care field, such as nursing or physical therapy students, because they have an innate interest and want to gain experience.
Background checks are a must, and can be done online for between $30 and $70, says Armand Legault, who shares his Connecticut home with three live-ins.
|Therese Nadeau with her service dog/roommate Sassy.|
He once hired a man who disclosed he’d been in prison in his youth, “and he was one of the best live-ins I ever had.” But if an applicant doesn’t disclose a criminal past and you discover it in a background check, don’t hire him, he advised.
Legault’s found the best way to find a potential live-in is to take out an ad in the “roommates wanted” or “rooms for rent” section of the classifieds, not the employment section. Another fruitful venue is university bulletin boards, Bennett says.
A key question Legault likes to ask is “Why do you want to be a live-in?” If the answer comes back “because I like taking care of people,” steer clear, he advises. He’s learned the hard way that means “they want to be in control of my life. You want somebody who says they want to save money — period.”
Sign a detailed contract
Carefully spell out responsibilities, hours, living spaces, household privileges, shared expenses, pay, days off, vacations, and policies on cleanliness, overnight guests, parties, drinking, smoking, your right to inspect their rooms (with notice) — and anything else that’s important to you.
Make the contract for one year, and review and renew annually. Having a contract gives you a lot of leverage if your roommate “forgets” a responsibility or agreement.
Legault has turned his live-in experiences into a how-to booklet called “Roommates Plus,” which is available for free by contacting him at email@example.com. The booklet contains sample contracts, as well as interview questions, a way to rank applicants, and general advice.
Set and enforce clear boundaries
“You have to be an expert at asking for help,” Wrigglesworth says. “Unlike family, a roommate cannot be expected to sense your every need.”
But at the same time, you have to be wary when a roommate asks for your help. Lending money, or allowing them to do something that makes you uncomfortable, or not saying something when they’re late or leave you stranded, is a no-no.
“Setting boundaries takes a lot of practice,” says Gaynor, of the CPASS program. “You have to be comfortable telling someone else what to do. Because you’re dependent on them, you don’t want to lose them, you don’t want the repercussions. There’s a certain element of fear. That’s why it’s best to set up all the limits in advance.”
Because of the hassle involved in finding a good PCA, everyone bends the rules, Bennett admits. “You have to be realistic. I never let anyone borrow my van or give them access to my bank accounts, but if a roommate doesn’t pay half the TV cable, I let it slide. Some things you let go by, but when it comes to your health or well-being, you don’t.
“For example, I’ll forgive being late, but not forgetting to show up. I won’t tolerate someone being drunk or doing drugs when they’re working for me, but I knew one roommate smoked marijuana when he wasn’t at the apartment.”
In other words, you must have a bottom line. If you’re going to bend, know where the breaking point is.
Give it a try
Like anything else in life, there’s no guarantee of success, but no promise of failure either. Weigh the pros and cons, and see if you might come out ahead by sharing your home with someone else.
“Don’t be so afraid,” Legault urges, adding that, in his experience, “99.9 percent of people are not going to hurt you or steal from you. They only want to do their job and do it right. Once you do this — and I’ve talked to others and they agree with me — you say, ‘Gee, I wish I’d done this a long time ago!’”