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INDEPENDENT LIVING WITH ATTENDANT CARE: A GUIDE FOR THE PERSON WITH A DISABILITY
INTRODUCTION
For many severely disabled people, the key to being able to live independently
is securing and maintaining attendant care. For most severely disabled people,
independent living could not be realized at all witout the physical assistance
(PCA's)
provided by personal care attendants. What are personal care attendants and how
are they different from nurses, nurses' aides, or even your parents who might also
be assisting you in your personal care? Personal care attendants are people hired
by you to assist you with your activities of daily living. Unlike professional
aides such as nurses, PCA's do not have specific and set ways of doing tasks but
instead, take directions from you. Sometimes parents have an annoying way of
taking over control of your life without any imput from you. In contrast, PCA's
depend upon your input to help them do their job in the most satisfactory way for
you. The concept of independent living is based upon the notion that the handi-
capped individual has the right to make his own decisions and to have control over
the direction of his life. Directing your own care with the assistance of a
personal care attendant is a, prime example of this concept in action.
This booklet is intended to provide you with information regarding the hiring
and management of personal care attendants, (PCA's) Much of the
data
and
comments
reflected in this presentation is the result of personal experiences related by
handicapped people who are currently living on their own and who have used PCA's
in a variety of settings and situations. Still other information was gathered from
PCA's themselves. The Attendant Management Module taught in the New Options Transitional
Living program, The Institute for Rehabilitation and Research, Houston, Texas,
provided a model for teaching and learning about PCA's and their relationships with
handicapped individuals.
This booklet will examine several major areas in attendant management:
page 2
(1) Models of Providing Attendant Care, (2) Interviewing and Hiring the PCA, (3) The
Relationship Between the Handicapped Individual and the PCA, and (4) Terminating the
PCA. It is hoped that you will benefit from the experiences related and that-you
will consider all of the options available in using PCA's to increase your own
opportunities in independent living.
MODELS OF ATTENDANT CARE
There are a number of attendant arrangements for disabled people who want to live
more independently. Basically, the models can be classified as: (1)private or (2) shared
attendant systems.
(1) Private Attendant Systems
One-to-one attendant situations occur most frequently in three settings: with a
handicapped person who is lioning alone in an integrated apartment complex or a house
in a residential neighborhood, with a handicapped person who is living with his family
or spouse and who has outside help for activities of daily living, and in a college
dormitory situation where the attendant might also be the disabled person's roommate.
In each of these settings, the disabled individual is generally responsible for hiring,
supervising, and terminating his own PCA.
(2) Shared Attendant Systems
Another option which is becoming available in several communities across the country
is clusteredliving arrangements. Groups of handicapped people with similar attendant
needs live within close proximity to each other (for instance, in the same
apartment complex), and attendant services are contracted for the entire group.
A
handicapped person might work with two or more attendants in one day, and PCA's are
usually available 24 hours per day. Most systems of this type maintain a full-time
staff attendant manager who is responsible for scheduling and supervising the PCA's.
Some clusters manage thier attendant systems through a board of directors and/or
page 3
a grievance committee. Shared attendant systems imply that residents share responsibility
for hiring, supervising and terminating PCA's.
There are several advantages and disadvantages with each system. Handicapped
people who prefer the private attendant system maintain that they have more control in
choosing a PCA who is compatible with their particular set of circumstances. Disabled
individuals in a shared attendant system often feel more secure knowing a PCA is
available throughout the day. The private attendant system allows more choices in
living arrangements for the handicapped person while the shared attendant system is
usually available in a specific location such as an apartment complex. Some handicapped
people prefer the friendships and closeness of living around others with similar dis-
abilities and needs; on the other hand, some disabled people feel more comforatble living
alone and enjoy interacting with able-bodied neighbors. In a shared attendant system
problems might be easier to solve when approached by a group because more solutions
are generated. These are just a few of the considerations in choosing one type of
arrangement over another. Ultimately, you will be the one to decide on the system
that will enable you to participate fully in independent living.
INTERVIEWING AND HIRING PCA's
Where to Find Potential PCA's
Before discussing interviewing techniques, it seems logical to first examine the
ways and means of locating potential employees. This step involves knowing what you are
looking for and then advertising in the appropriate publications and/or agencies.
Even the wording of your ad is important in appealing to the type of individual you
are looking for.
These are some of the questions that must be answered before you begin the hiring
process.
1. Are you looking for full-time or part-time help?
2. When do you require the most assistance, i.e., at peak hours (morning and
evening) or consistently throughout the day and evening? Examine your personal daily
page 4
routine to determine you individual needs.
3. Do you want the PCA to provide his own transportation or to live on or near
a bus line? Or do you prefer to have your attendant live with you such as in a
university dormitory?
4. What are your transportation needs? Do you want the PCA to have a driver's
license and to be able to drive for you?
5. Do you prefer a male or female PCA or does it matter?
6. Is the age of the PCA important to you? Strength (that is, ability to lift,
turn, etc.)? How about race? Religious affiliation?
7. Do you want the PCA to perform only physical care tasks or do you also need
homemaker services such as cooking and household cleaning?
8. What are your financial resources to pay for attendant services ?
It is also important that you examine your priorities in having a PCA. Do you
want an employee exclusively? Or are you looking for a friend, companion, housekeeper,
and/or substitute mother who will take care of all your needs with little decision-
making on your part? Knowing the type of person you are looking for will require
you to carefully examine your own values as well as your motivations for wanting
to live independently. Additionally, this initial self-examination will help you avoid
conflict with your attendant later in your relationship (see section on The Relationship
Between the Handicapped Individual and the PCA).
Once you answer these questions and know what attributes you are looking for, then
you are ready to write your ad. In the ad, you should give just enough information to
attract qualified prospects without being too wordy or, turning people off because of
unrealistic expectations.
Here are some possibilities:
WANTED: Dependable person to provide physical care assistance to handicapped
adult 6-9 pm M-F. Salary: $3.25/hour. Call Jim at 000-0000.
or
WANTED: Female to assist in personal care activities of physically disabled
adult; full-time; light housekeeping and cooking required. Salary: $125/week.
page 5
Call Jill at 000-0000.
Placing Your Ad
Many handicapped people have an elaborate communication network for locating
attendants. Depending on the size of your community, you may or may not want to
advertise in your local newspaper. Several disabled people have related that in a very
large city, they have had little response when advertising in the city newspaper. They
prefer to advertise in more localized publications such as neighborhood newsletters.
Here is aflist of possible places to post your ad:
city newspapers
college newspapers
college employment offices
neighborhood newspapers or newsletters
church bulletins
employment agencies
college dormitory bulletin boards
library bulletin boards
supermarket bulletin boards
ethnic newspapers
YMCA/YWCA bulletin boards
vocational rehabilitation agencies
hospital bulletin boards
organizations that provide services to handicapped people
consumer organizations for handicapped people
In addition to placing ads in various locations, handicapped people also rely
on word-of-mouth to make their need for a PCA known. They might talk to friends,
neighbors, co-workers, relatives, medical personnel, social workers, other attendants,
and other handicapped people. Even if these people aren't able to help directly,
page 6
they might be able to give you some good leads.
Interviewing
Once you have located one or two potential candidates through your ad campaign,
it is important that the two of you meet face-to-face to determine if you will be able
to work together. The interview has several purposes:
1. to allow you to assess the skills of the potential PCA through specific
questioning and/or demonstration,
2. to allow the candidate to assess your specific needs,
3. to assess personalities and ability to work together.
In an actual interview, some people ask the potential PCA to complete an application
form; others feel that this step is too formal and prefer to conduct an interview through
informal conversation. Although you should never rely on an application form alone,
a combination of a form and a face-to-face conversation would probably yield the most
information. Through the interviewing process, you can double check the information
recorded on the application. The types of items that should be included on an application
form could include such things as previous work experience, health record, convictions,
type of transportation, driving record, and references.
The following interviewing issues and techniques were compiled by disabled people
who participated in the New Options program at The Institute for Rehabilitation and
Research in Houston, Texas. They reflect areas of importance to handicapped people who
have used PCA's for a number of years.
1. Personality is very important. Think in advance about the kinds of traits
you think are important to look for. Does the applicant appear to be passive, aggressive,
or somewhere in between? How does this relate to the type of personality that you
have?
2. Discuss previous work record--dependability, how long the person stayed on
the job, salary, responsibility, how he got along with other employees, how he got along
page 7
with supervisors. The answers to these questions will give you some idea of the
applicant's reliability which all handicapped people who were interviewed in preparation
for this publication consider to be the number one consideration and the most important
trait a PCA should have.
3. Discuss convictions, driving record, health record, and drug and drinking
problems in detail. It has been the experience of some disabled people to find that
their medication, especially Valium, disappears quickly with some PCA's. Still others
have reported personal belongings or liquor missing. In addition to theft, reliability
is an issue with PCA's who drink excessively or use drugs.
4. Discuss modes of transportation in detail, including backup systems for those
inevitable occurrences of car trouble or broken down buses. Some disabled people
hesitate to hire a PCA who lives more than 5-10 miles away because of the increased
likelihood of transportation problems.
5. Discuss job tasks in detail including the time required for each task. Be
specific about bowel care, bladder care, dressing, transfers, showers, etc. This is
often the most difficult part of an interview because of a reluctance on the part of
the handicapped person to discuss such intimate, personal aspects of his/her daily
routine. The best way to approach these topics is in a matter-of-fact way with the
attitude that no matter how much you would like things to be different, this is the
way things are, this is the reality. There are several ways to approach intimate
subjects with a PCA candidate. You can start by saying something like: "Two of the
areas in which I need help are bowel and bladder care. This involves cleaning my
catheter and legbags daily to prevent infection. My bowel program takes place
every other day using suppositories and a commode chair.' Additionally, you will
likely have to clarify some terminology (such as "catheter") if the PCA is not medically
oriented. Remember that a potential PCA will probably be uncomfortable about talking
about these areas, too. You can help put him/her at ease by being clear, matter-of-fact
maintaining a good eye contact, and remaining calm. You will only increase the tension
page 8
if you are fidgety, look at the floor or ceiling, or fail to explain your situation
fully.
6. Discuss hours, rate of pay, time off, and weekend responsibilities. Also, let
the candidate know how he/she will be paid, i.e., through a third party payer such
as a state agency or a direct compensation from you.
7. Ask open ended questions (those that can't be answered with a yes or no). For
example, an open-ended question would be, "Why would you like this job?" rather than,
"Would you like this job?" You will get much more information from open ended
questions. The more information you have, the better your decision will be.
8. Finally, at some point in the hiring process, you should check the applicant's
references. This will give you the benefit of other's perceptions of the individual
and will prevent you from having a one-sided and perhaps distorted picture of the
applicant.
Training
Since you are a unique individual with special needs and established routines,
you will probably want to train your PCA yourself. Sometimes, though, a demonstration
is clearer than a verbal explanation; if this is the case, you might want to ask the
person who usually provides your care to be present the first couple of working
times with your PCA. It is important that you do not make assumptions about the know-
ledge base of the PCA. One handicapped person related that he once ended up on the
floor because he assumed his new PCA knew how to help him transfer from his bed to
his wheelchair. Explain your routine fully and in detail.
Another area that needs to be discussed early in the relationship is emergency
procedures. In general there are two types of emergencies you should be concerned
about. One type is a routine emergency such as a deep cut or a fall requiring a
standard first-aid procedure. The other type is an emergency directly associated with
your particular disability. The latter type of emergency might require that a PCA
have some specialized knowledge about your disability and the kinds of emergencies you
page ,9
might be prone to. For example, if you have a spinal cork injury, the PCA should be
familiar with dysreflexia and how to treat it. If you have a neurological disorder
the PCA should know something about seizures. In all cases, the PCA should know the
names and phone numbers of you doctor, an ambulance service, the fire department, your
pharmacy, and your closest relative or friend.
THE RELATIONSHIP BETWEEN YOU AND A PCA
Good or bad relationships with your attendant depend to a large extent on the
mix of values, motives, and personalities of both you and your PCA. Depending:upon the
setting and the type of attendant care you subscribe to (one-to-one vs. shared),
you will find yourself in numerous situations which will probably cause anxiety,
tension or conflict between you and your PCA. One reason for this is the fact that
you and your PCA do not have exactly the same personality type nor do you share exactly
the same values. Knowing your own values and being aware of the qualities you admire
in other people will help you realize your abilities to get along with and to work
with a variety of people.
The following character types are presented to illustrate specific traits you
might recognize in PCA's your friends, your family, or even yourself. The traits are
not exclusive to any one individual; that is, every person exhibits numerous characteristics
in his daily interactions with different people. There are many variables that affect
the way you communicate at any given time including the way you feel, the weather,
problems you're worried about, or impressions you hope to make. The illustrations below
present an analysis of a few types of behaviors along with the possible consequence
of each behavior.
Attendant Charcter Types
l. The NURSE: these are people who have developed their own medical techniques
and refuse to do a task any other way. They direct the handicapped person's care
rather than the disabled person assuming responsibility for his/her own care.
2. The "MOTHER": the attendants feel their job is to take care of disabled
people and to nurture them. This is the type of person who hovers sweetly, pats
page 10
disabled people on the head or arm, and does things that are not needed.
3. TheBEST FRIEND/COMPANION: the attendant allows no privacy for the handicapped
person and refuses to allow him/her to have other social relationships. This attendant
would probably expect to be included in all social activities planned by the disabled
individual and inded, would be hurt if left out.
4. The OVERPROTECTOR: this person's creed is "I know what's best for you. "
The attendant might try to prevent the handicapped person from taking even minor
risks, thus encouraging a dependent relationship.
5. The GOOD SAMARITAN: the attendant is a "do-gooder" whose primary objective
is to make himself/herself feel needed. This person's creed might be "You've suffered
enough already, let me take care of you". The GOOD SAMARITAN will do more for you
than is necessary and may treat you like a child.
6. The DRUG ABUSER: these attendants may do a good job when they are not
"spaced out". They are usually unreliable and/or inconsistent in behavior.
7. The PREACHER: these individuals insist upon imposing their religious
beliefs upon the handicapped individual. Some attendants have reportedly attempted
to perform their duties through prayer. They do not respect another person's rights
to his own beliefs and values.
8. The ASSERTIVE PERSONALITY; these individuals state their feelings and needs
in a direct yet non-threatening manner. They do not "put down" another person. They
behave in a consistent manner and have a strong sense of self.
Disability Character Types
1. The AGGRESSOR: these individuals are characterized by being overly demanding
and bossy. They show no appreciation to the attendant.
2. The MARTYR: this individual's favorite phrase is "Don't worry about me, "
followed by a big sigh. This attitude encourages feelings of pity and even guilt from the
attendant.
3. The PACIFIST: this is a passive personality whose main goal is to avoid
page 11
conflict. This often results in unmet needs because of a fear that the attendant
might be angry if asked to perform a task outside the normal routine.
4. The GUILT-MAKER: these people have difficulty accepting their disability
and attempt to place the blame on others. Their nonverbal message is "Oh, poor me"
or "The world owes something to me". Because no one wants to accept the blame or the
negative messages from the GUILT-MAKER, there is a tendency to avoid this type of
person.
5. The ROLLERCOASTER: these people experience extreme mood swings which cause
their behavior to be inconsistent. One minute this person is happy, the next, sad.
Not knowing what to expect can hinder effective communication.
6. The DRUG ABUSER: the handicapped person might behave in an inconsistent
manner and/or be unable to assume responsibility for his own care. This puts the
burden of care on someone else and is not conducive to the idea of self-direction
in independent living.
7. The PREACHER: the disabled individual attempts to convert the attendant to
accept his/her religious values, interspersing his conversation with quotes from the
Bible or other religious doctrine. Again, this person does not respect another
person's rights to his own beliefs and values.
8. The PERFECTIONIST: these individuals are often described as "picky" by their
attendants. Generally, the handicapped person insists that tasks be performed in
very specific, detailed ways with no flexibility. Setting realistic priorities might
be difficult for this disabled individual.
9. The ASSERTIVE PERSONALITY: like assertive attendants, assertive handicapped
people are able to express their needs in a direct yet non-threatening manner. They
do not manipulate other people. They know themselves and usually have an air of
self-assurance.
These descriptions are by no means exhaustive. As you can see, there is an
almost infinite variety of pairings in this sample. Some of these pairings are bound
page 12
to cause conflict while others might prove to be satisfying workable relationships.
Besides possible conflicts caused by different personalities and values, there
are also situational conflicts. These are conflicts which occur over specific indi-
dents at specific times. An example of a situational conflict is:
A PCA is helping a handicapped woman dress for work. The woman tells the PCA
that she would like to wear her wrap-around skirt today. The PCA chooses another
outfit saying it is too much trouble to put on the wrap-around skirt.
Situational conflicts can occur at any time during the day-to-day relationship
with your PCA. Another typical example of a situational conflict is:
A disabled person requests to go to bed later than his attendant who shares
his apartment.
How do you resolve these conflicts? Each person's response to a conflict situation
is important. There are three basic ways to respond to any situation: (1) the passive
response, (2) the aggressive response, and (3) the assertive response. These response
patterns and their consequences can bes t be illustrated using the two examples of
situational conflicts above..
Situation A: A PCA is helping a handicapped woman dress for work. The woman
tells the PCA that she would like to wear her wrap-around skirt today. The PCA
chooses another outfit saying it is too much trouble to put on the wrap-around skirt.
1. Passive response--The handicapped woman passively accepts her attendant's
decision to choose another outfit for her. Consequence: the disabled woman loses the
control over her own life and relinquishes her right to make her own decisions. The
PCA achieves her goal at the expense of the handicapped woman.
2. Aggressive response--The handicapped woman "blows up" at her PCA, calling the
PCA names and perhaps complaining about other grievances. Consequence: the handicapped
woman depreciates her attendant and achieves her goal through anger. The PCA on
the other hand, feels hurt, defensive, and humiliated. There is a possibility of
retaliation.
page 13
3. Assertive response--The handicapped woman politely but firmly restates her
wish to wear the wrap-around skirt and expresses her reasons. Consequence: the
handicapped woman chooses for herslf and feels good about herself. The PCA understands
the feelings of the handicapped woman and may increase sensitivity to her needs.
Situation B: A disabled person requests to go to bed later than his attendant
who shares his apartment.
1. Passive response--The handicapped person meekly succumbs to the PCA, rearranges
his plans and goes to bed at the same time as his PCA. Consequence: the handicapped
person feels resentment and anger towards the PCA. The PCA may be unaware that there
is a problem SO that there is no opportunity for open discussion and/or compromise.
2. Aggressive response--The handicapped person loudly procliams that he doesn't
care what time the PCA goes to bed and that he is going "out" and doesn't know when he
will return. He purposely slams the door as he leaves. Consequence: the PCA is
angry because the handicapped person has not considered his needs. The PCA decides
to retaliate by making the handicapped person wait several hours after he returns
before helping him to bed.
3. Assertive response--The handicapped person explains his need to stay up
later than the PCA. They agree to perform most of their nightly routine early in
the evening SO that the actual process of going to bed will take a minimal amount
of time. Consequence: through compromise both the handicapped individual and the PCA
get their needs met. No one's feelings are hurt.
As you can see, not only is it important that your PCA understand your needs
but it is equally important that you understand your PCA's needs. The assertive
response is the most honest way of dealing with conflict situations; using assertiveness
can lead to effective compromises where each person involved contributes and is comfortable
with the resulting solution. Open and direct communication will facilitate understanding
but is not guaranteed to get you what you want. Being an assertive person takes
practice. Remember that you can only control and be responsible for your own responses.
page 14
Even if you are honest and direct, your PCA could respond passively or aggressively.
In any relationship it is important to project what the possible consequences of
your actions are. Sometimes you may respond passively or choose to ignore a comment or
action because the end result is not that important to you. For example, does it
really matter to you that your PCA wears torn blue jeans to work and you prefer a
neater appearnace? On the other hand, there may be times when you feel so strongly
about a situation that you might be willing to risk damaging the relationship in
order to defend your values. For instance, suppose your PCA wants to use your apartment
to store his/her marijuana and you don't want anything to do with it. Are you willing
to risk losing your PCA by being aggressive about your feelings concerning this matter?
Your response to any situation is an individual choice. Each set of actions will
require individual consideration and evaluation.
use
small letters
BACK-UP SYSTEMS
Many handicapped people avoid confrontations with their attendant because of an
overriding fear that the PCA will retaliate through neglecting responsibilities or
by simply abandoning the disabled individual. It is a common mistake for the handi-
capped person to depend solely on one or two PCA's with no allowances for the PCA to
become ill, develop transportation problems, get weathered in, or experience some
other type of emergency. Although adequate notice for time off or for leaving the
job should be negotiated at the time the PCA is hired, there are occasions when prior
notice of absence cannot be given. For this reason, it seems imperative that you have
a back-up plan in mind if not one that is actually written down. Having a reliable
back-up plan can also substantially reduce fears of abandonment by a PCA who might
become angry at something you do or say: A back-up system assures that you are able
to remain in control of a situation.
There are probably several sources of temporary back-up help available in your
own community. In large cities, medical personnel services are a prime resource