When You Need It, or
Solving the Home Care Dilemma
Raymond J. Aguilera, Brian Bennett, Erica, Bob Feinstein, Chris
Isherton, Ken Moses, Larry Roberts, and Randolph Warren
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I'd like to start
a discussion about home attendants and home helpers. I have had
to hire people to help me and I am paying for it out of pocket.
I'd like to know what a fair rate is for someone who helps with
shopping, takes me for walks, reads mail, and does some cleaning.
Also, how do those of you who pay for help view the person helping
you? Is it strictly a business arrangement? Is it wrong to have
a relaxed rapport? If I like a helper I'm tempted to treat him more
like a friend, but I know he's an employee. How do you keep the
line between helper and friend? It seems blurry to me at times,
maybe because I don't have many friends in NYC.
Do those of you who
pay for help tell your helpers you are gay, or is that private information
you don't divulge? I am in some ways leading a fuller life now that
I am paying for help, but in a strange way, I almost feel like I'm
paying for friendship, and that makes me uneasy. Thanks for helping
me with this troubling matter.
How much to pay is
the easiest question to answer. Here in Ontario, the going government
subsidy rate for helpers in the home can vary from $10.95 an hour
to start with up to about $12. Rates vary between so-called attendant
care and standard housecleaning rates. It depends on what you need.
I think it's safer to go with attendant care rates because the person
is likely to be willing to provide a broader range of services.
As you will not likely have a set routine, attendant care gives
you more flexibility. Call an agency to determine what the rates
are in your area. If you're paying privately you can probably pay
a lower hourly, since an agency gets no cut.
When it comes to
the friendship/business question, my rule is to hire on a strictly
business basis. Always keep in mind that you may have to fire someone.
I employed someone for three years and became concerned that I would
not be able to fire him or have the same expectations that I deserved,
so I slowly let him fade away and replaced him. Remember that you
are the one who's paying, and have rights as an employer to expect
first- rate service.
The rapport between
employer and employee can be tough to manage. Many people have a
relaxed rapport with attendants. I view it as a team thing, but
you, as the person needing the service, must always keep the upper
hand. When the line becomes blurred too much there is likely to
be a drop in servicethe person arriving late, putting things
off, extending time because of conversation, or even you feeling
like you are imposing.
Some of my care can
be very intimate, and when having those needs met, it can be very
easy to develop feelings. This complicates the relationship and
is something you should try to avoid at all times. Simply put, do
not confuse respect and trust with friendship, but I there is no
right or wrong about this, it depends on your comfort level. Remember
one question to ask yourself about an employee: if you weren't paying
him, would he be in your life? These are all hard truths best faced
When I let an attendant
go, I impose a one-year no-contact rule that works well for me,
because the potential transition to friendship is a delicate one.
Only one of my former attendants is a friend today. The others,
however, do stay in touch for their own reasons, whether it's because
of the need for references or just out of loyalty.
Should you tell those
you employ that you are gay? That really depends on circumstances,
needs, and your own comfort level. When I use attendant care, I
am usually traveling. In order to lead my life the way I prefergo
to gay bars, for example, or meet with gay friendsI find it's
better for attendants to know, so they are not made uncomfortable.
In some cases, though, if a helper is not needed in my "gay life,"
I simply do not bother to come out. If they figure it out fine,
but it is not really their business. This is not to say I am hiding
anything, it's simply a judgment call. I will say that my best attendants
were those who knew the whole picture.
Bob, the fact that
some of the contradictory circumstances in your life make you feel
uneasy ("I almost feel like I'm paying for friendship.") is a testament
to your good instincts. If you are feeling that way, then likely
you already have a good feeling for the lines that should not be
crossed, but also keep in mind that another human being is involved.
I suggest that you establish a regular free-wheeling assessment
time, when you and your helpers can exchange views candidly. You
want them to know what's on your mind but you should encourage them
to tell you what's on theirs, as well. Above all, trust your instincts
and follow the number one rule in attendant care: communicate effectively.
Instead of looking
at attendant care as something you're stuck with, think of it as
empowering. It has made my relationships with friends and family
stronger because they are freed from those helper roles. It was
difficult for me to get used to having my more intimate needs met
by strangers, but once you get the right attendant and learn to
handle things in a matter-of-fact way, it becomes much easier.
Know the people you
are hiring and make sure you are always capable of firing them.
When it feels like you can't, then I would say the line between
you is too blurred. Remember that attendant care is meant to help
you live your life your way. It's not about buying a new circle
of friends. Like everything in life, you will need to work these
things out by trial and error, but I think you are on the right
track just by raising these issues!
London, Ontario, Canada
Although I don't
use attendants myself, I spent several years running the attendant
referral department at an Independent Living Center. In my experience,
sexuality in general is an "iffy" topic for most people, especially
when it comes to dealing with home helpers.
I don't mean to minimize
the difficulty in how we need to tackle the issue, but experience
has taught me that some people just have a problem with disabled
folks being sexual at all. Gay or straight, it seemed like many
people we worked with at the ILC had the same problem. It turned
out that attendants who weren't spooked by sex in general weren't
bothered if someone was gay or straight, so that may be a good way
to sort of feel someone out (no pun intended) without having to
come out to them. Anyway, it may be a good place to start.
For nearly twenty
years I did in-home personal services work (as well as disability
education and advocacy, legislative lobbying, committee work that
included writing the rules for a state-wide Personal Assistance
program, and agency management), so I know exactly what it's like
from the other side of the fence. Before addressing Bob's questions,
however, I want to make what I believe is an important point about
language, one that originated with the Independent Living movement
in the United States. "Home Care," "Home Health Care," "Personal
Care Attendant" and similar terms are demeaning to otherwise healthy
people with disabilities. I've been working, with some success,
for the adoption of "Personal-Service Assistant" as a preferable
alternative. Here in Minnesota our peculiar Vulnerable Adults law,
which defines people with disabilities as automatically being incompetent
invalids who must be protected from themselves, was a key factor
in trying to clean up such language and promote Independent Living.
The going rate for
agency employees in Minneapolis-St.Paul is $10-$14 per hour, usually
without benefits like health insurance. The agencies then charge
the clients (or the state, for those on government subsidy) about
30% above that wage for overhead and taxes. If you plan to hire
someone privately and pay out-of-pocket, you can pay either by the
hour or by the visit, and you will need to negotiate directly with
your helperwho is an employee only if you withhold taxes and
file quarterly returns. Otherwise, the helper is a "private contractor,"
a situation that can put you both on shaky ground if the IRS investigates.
Regardless, the pay is deductible from your taxes as a "medical
expense," assuming you have enough income to pay taxes on.
Keep in mind that
employment and tax laws (and, in fact, laws of all kinds that have
an impact on disability) will vary from country to country, or even
from state to state in the United States. Here in Minnesota, for
example, the big downer is the Vulnerable Adults law, referred to
earlier, which means the state is hovering to jump in and "protect"
disabled citizens, whether or not they want or need such protection.
Bob, you ask if it's
OK to have a "relaxed rapport" with people you pay to help you.
The relaxed rapport is fine, and you can socialize like friends,
but remember it is a business relationship first, and you're the
boss. You both have to be careful not to get too attached and to
treat each other with respect.
There's no arguing
that the line between helper and friend can get blurry. It's a lot
like paying for physical trainers or therapists, or for shrinks
or doctors. You're buying a service, however personal and friendly
it gets, and it's up to you to maintain that attitude. Strategies
like keeping timesheets and writing paychecks together go a long
way toward establishing and keeping boundaries.
I think that everyone
is going to respond differently to the "Do you tell your helpers
you are gay?" question. It's not necessary, but keep in mind that
being closeted (whether it's you or your helper) can make things
more difficult. Better to be open, I think. And my own experience
tells me one more thing: same-sex helpers do better work when they're
gay, even if the client isn't!
The Twin Cities, Minnesota
blurry line between employer and employee makes me recall a bizarre
experience. The one PCA I had always arrived late, drank my booze,
popped my Vicodin, and was generally a shitty attendant, but made
up for it by sharing his amazing porn collection and giving excellent
head. Needless to say, my psyche was a little fucked up immediately
upon leaving rehab. Luckily, he never stole from me, or left me
for dead; but he did convince me to report him as working for two
weeks after I finally got rid of him, leaving me without even a
bad attendant for the remaining period for which I had insurance
coverage. However, I did draw the line at letting him move in!
of us had appropriate boundaries at the time. One thing that I should
add is that I was relatively physically independent when I left
rehab, but was an emotional train wreck. I had funding for a PCA
because it was part of an insurance settlement (more expenses =
larger settlement = higher fees for my attorneys). More than likely,
had that funding not been available, my own insurance would never
had paid. I was also intent on doing everything myself, and was
more worried about whether I could still trick than do my ADLs.
Add to that mix an inexperienced young PCA with a substance abuse
problem and not a lot to do, and things just happened. I don't mean
to sound harsh against the guy because it was as much my fault as
his, and at the time, I wanted the sex and companionship more than
anything else. Can't say for sure what he got out of it, but that's
my perspective. None of this is meant to indict the great PCAs out
there, by the way.
My attendant care
is paid for by United Rehabilitation Services. One time I needed
some extra cleaning done and hired an attendant for thirty dollars
for two hours. Fifteen dollars an hour seems about the going rate
here in Ohio for someone with a nurse's assistant certificate. I
have two attendants. Each comes once a week to help with household
chores like grocery shopping and cleaning. One attendant became
my friend because she was my ex-lover's attendant before she became
my attendant. We are quite friendly. Sometimes we do share about
relatives and friends. There are times when I wonder if I should
be sharing quite so openly with this person. I can forsee that it
might be emotionally tough to fire her if it ever becomes necessary.
My other attendant
will make small talk, talk about current events or church, or ask
about my parents. I ask about her family as well. However, when
she is done for the day I sign a time sheet where she checks off
the things she has done that day. "Provide conversation" is
one of the "tasks," which makes me feel like "hmm ... maybe she
wouldn't talk to me if she wasn't getting paid for it." So I do
understand your uneasiness, Bob, about the blurry line you described.
I have told my helpers
that I'm gay. It just seems more convenient to be up front about
my sexuality instead of having to worry about leaving a copy of
the "Advocate" PFLAG newsletter on the table and have questions
about it. I'm out to anyone that cares to ask, but I don't broadcast
Anybody looking into
home help should begin by answering some basic questions. Do you
have medicaid? Are you eligible for longterm care? Does your state
have a Medicaid Consumer Directed Personal Assistance Program?
In New York State,
Medicaid recipients who are eligible for longterm care can apply
for a program that allows them to hire, supervise and terminate
their own personal care aides. I don't know what level of skill
the program will pay for (can you hire RNs or LPNs thru the program,
for example?) Local Centers for Independent Living should be able
to answer questions like this.
Ken, I have to take
issue with your comment about same-sex helpers doing better work
when they're gay. Sounds to me like your stereotyping, and stereotypes,
whether negative, or positive, do not help anyone!
Bob, you wanted to
hear about some of the experiences other people have had using attendant
care. I employ attendants for travel. There was a period about ten
years ago when I was virtually helpless when using my manual wheelchair,
and was staying at a less-than-ideal hotel. Everything seemed to
be OK, when all of a sudden my attendant went ballistic, slamming
drawers and throwing things around, yelling and screaming. This
happened after my evening routine was done, so I was stranded in
bed. He then stomped off and disappeared into the night!
It turned out he
had some problems at home, but whatever the reason, he freaked,
and scared the hell out of me. I got no sleep and waited for more
than six hours for him to return. When he showed up, I was petrified,
but I stayed calm. Because I was fully dependent on him at the time
I chose not to confront him simply in order to get through the trip.
Needless to say, he never worked for me again.
It did make me more
aware of what can go wrong, however, and now I have back-up plans
and pay far more attention to what is going on with an attendant.
A close friend who was abandoned
on a trip to Egypt had to be rescued and taken care of in a hospital
before being sent home on a medical flight!
When your safety
depends on the stability of the person you're paying to help you,
you need to learn to be a nosy consumer. I don't want to conclude
on a "nervous-nellie" note, however, so I want to be careful to
say that for all the strange and scary moments, I have had ten times
more positive experiences, and some that were downright wonderful.
One last thing: be
very careful never to hire a devotee as an attendant.
Randy, your mishap
really, really upset me. Just reading about it made me almost cry.
I would have been scared beyond words; I don't know what I would
I had one peculiar
experience after a recent heart attack when I hired a guy to spend
nights with me because I was afraid to stay alone. He also took
me for walks and helped with other things. He told me he was on
lithium and I noticed a few unusual comments, but he seemed okay.
Toward the end of his stay (after having been with me for about
a week), I woke up one morning to find him on a rampage. He was
shouting that he was a student of film and shouldn't have to be
taking care of a blind man, and that he couldn't stand the fact
that I walked around in my underwear and that one of my testicles
was hanging out (!).
I was really scared
and just asked him to leave. He did, and then banged on the door
and asked for a written statement that he had never stolen from
me. I told him, through the door, that I would give him no such
statement, and that if hadn't stolen anything he had nothing to
worry about. To my horror, he called my aunt Sylvia, a woman of
86, (I had given him her phone number in case I had to go back into
the hospital) and he told her the same thing about my wandering
around in my underwear, and how disgusting it was. I told her that
this guy had proved to be very unstable. Luckily, my aunt's memory
is not good, and she promptly forgot the incident.
That's nothing in
comparison with what happened to you or to your friend who was stranded
in Egypt, but it was totally weird and scary nevertheless. My latest
helper is not gay, but is very soft-spoken and sensitive and willing
to do whatever I need. I feel my life is fuller now, and I don't
care if other blind people think of me as less independent because
I have paid, sighted help.
I appreciate your
empathy, Bob. My intention is not to cause fear, but to educate.
I must confess though that the incident I described was terrifying.
Because of it I changed my hiring practices. Now I insist on several
trial trips before hiring someone permanently, always going to destinations
where I either have a close circle of friends, or to places where
I know I can find alternative attendant care in an emergency. I
also make sure, to the point of obsession, that a phone is within
my reach at all times, and I try, whenever possible, to get to know
a hotel's desk staff so I know who I can ask for what!
You raised the issue
of confidentiality. I have now taken to having employees sign a
confidentiality agreement. Such things are not really worth their
salt here in Canada, but if you word them carefully they can create
a basis for dismissal. The shame of a confidence betrayed lingers
on for many years. I had a similar situation to yours when an attendant
was picking me up for a trip. I was running a little late, so I
had to get something at the far end of my condo. Unbeknownst to
me, my attendant got into a bedside drawer, which (I blush to say)
contained memorabilia of some youthful conquests. My attendant,
on a break, took it upon himself to have coffee with my boss and
fully describe my collection. My boss then confronted me in a very
homophobic manner. I needed the attendant in order to get back home,
many miles away, so I had to keep my mouth shut. What a nightmare.
Part of the fault
was mine. I had never come out to this attendant, since we had always
traveled for business and never for personal reasons. Nevertheless,
the betrayal of confidence, the personal snooping, was a bitter
lesson. As a result of that experience I've concluded that full
disclosure saves me grief in the long run. Ironically, I never ask
attendants if they are gay. This has never been a criterion for
me; as an employer, I just think it's none of my business.
One stereotype of
people with disabilities is that we live vicariously through the
lives of others, and most especially the lives of attendants. The
truth is quite different in my experience. Maybe the opposite happened
in my case: my life and my memorabilia were so exciting that my
attendant decided to share. Sorry, bad jokebut I've learned
to cope with humor! I guess I still feel raw over these and other
incidents, but the subject is important and I couldn't think of
a way of discussing it without sharing a personal moment or two.
My "real live" circle of friends would be shocked to read how open
I am becoming in writing.
Randy, with respect
to my comment about same-sex helpers being better if they're gay,
I disagree with your disagreement, though not with your objection
to stereotyping. I really believe it's a matter of practical facts:
in my experience gay same-sex helpers are simply far less squeamish
about the intimate physical contact involved in the work we're talking
about here. I had one PCA from an uptight educational background
(private church schools) who, when his client needed to use condom
catheters, could not bring himself to handle them or the client's
The same-sex part
of it is based on consistent observations that opposite-sex helpers
(even medically-trained people like nurses) are not as familiar
with the anatomy of their clients, regardless of the client's gender
identification. Returning to the example of condom catheters, they
fall off much more often when they are applied by women, notoriously
so in hospitals. And I, as a man, never quite caught on to how to
put a brassiere on a female client satisfactorily, though I had
no difficulty with supportive garments for men.
When making generalizations
(which are not the same as "stereotypes"), one has to acknowledge
that there are always exceptions. Generalities should be prefaced
with a stated or assumed "All other things being equal..." which
of course they rarely are.
Actually, Ken, I
don't disagree with you. The moral of my story is really one of
not staying in the closet. My reference to stereotypes was meant
to be a minor point, but whether it's a stereotype or a generalization,
I can say that I have never had a good shave from a female attendant!
I also agree with your remarks about gay caregivers being better
equipped on the whole, but I most appreciate your comments about
there always being exceptions. My best attendant was straight--not
squeamish at all about intimate care. But you are right, he was
I am just starting
to look into the whole attendant care thing, but I hardly know where
to begin. Where and how do you find a caregiver? Are there agencies
that help pay for a caregiver? How can I find someone willing to
accept the fact that I am transsexual? What would I do if a caregiver
didn't show up? Etc., etc.
I went and contacted
several Independent Living organizations in my area and beyond,
but instead of answering any of my questions, they referred me to
other Independent Living groups which I had already spoken to. To
top it off, I can't seem to convince my parents how important it
is that I start looking into independent living. My parents are
both up in age with health problems, and I fear that they won't
help me look into independent living possibilities until it is a
matter of having no choice.
Right now, I am in
a Catch 22 situation. My Spinal Muscular Atrophy means that I am
in a wheelchair and need a caregiver to stay overnight and to help
me wash and dress in the morning, but I need to find affordable
accessible housing before I can hire a caregiver. I don't desire
to live in my parent's house anymore, especially since they are
unaware of my sexuality, which means dating or socializing is nearly
impossible. But my parents won't help me investigate housing options
until they feel certain that they can trust that I'll be safe living
on my own with help.
Meanwhile, the safe
and accessible affordable housing I could have bought a year ago
has all but disappeared. Soon I won't be able to afford anything
more than a cardboard box. My parents agree that my desire for independence
is important, but only half-heartedly agree to help.
I've considered going
back to work, but that would mean even more reliance on my parents,
since they would have to get me dressed early and drive me to and
from work, plus I might risk losing my health insurance. Once I
am moved in and settled in my own place, perhaps going back to work
would be feasible, but for now it seems more of a potential hindrance.
Even so, I get pressure from family and friends who wonder why I
haven't gone back to work.
I don't expect anyone
to have easy answers, but for those with similar problems, I just
wanted to say, I'm in the same sinking boat.
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