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I. INTRODUCTION
For many severely disabled people, the key to being able to live independently is finding and maintaining personal care. Personal care assistants 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. 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 person with a disability 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 assistant is a prime example of this concept in action. A person with a disability is responsible for hiring, training, supervising, and terminating a PCA if necessary. A person with a disability who needs a PCA may work with two or more people in one day. This information is intended to provide you with tips regarding the hiring and management of personal care assistants.
II. PREPARATION
The first
step is to identify your needs. Making an outline or list is one
way to focus on all of your needs, including those things you
do not do everyday. The second step is to consider your financial
situation to evaluate what you can pay for PCA services. The amount
you can pay will depend upon your personal resources or the financial
assistance you might be eligible to receive. In addition, you
should check the going rate in your area for PCA services. The
Department of Social Services In-Home Support Services program
in California provides financial assistance if you are eligible.
If you live outside California, a program may be available in
your state. If you are paying for services yourself, you can check
your Telephone Directory in the Yellow Pages under Home Health
Care or an Independent Living Center nearest you for costs and
services.
Another option is to consider getting help through an agency or
home care services listed under nurses and nurses registries in
the yellow pages of your telephone directory. These services are
usually paid from your own funds. Another choice is a home care
referral service (or a registry). This service usually involves
a one-time fee for finding and screening workers for you. These
agencies cost more because you pay an agency fee. Some questions
to ask the agency include:
III.
INTERVIEWING AND HIRING
IIIa. Where to Find Potential PCA's
You can examine different ways 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 trying to find. These are useful questions to think about before you begin the hiring process:
It is important
to examine the type of relationship you want with your PCA. Do
you want an employee? Do you want a friend? Knowing the type of
person you are looking for will require you to carefully examine
your own needs. Additionally, this initial self-examination will
help you avoid conflict with your assistant later in your relationship.
Once you answer these questions you are ready to write your ad
with just enough information to attract qualified prospects without
being too wordy or turning people off because of unrealistic expectations.
If financing an ad is a problem, limit the ad to a few words.
There is also a possibility that there is free advertising in
a community newspaper or newsletter. Here are some possibilities
for ads:
HELP WANTED:
Disabled person needs personal care assistant. Must be dependable.
6-9 p.m. M-F. Call Jim at 000-0000.
HELP WANTED: Person needed full-time to assist in personal care
activities of physically disabled adult; light housekeeping and
cooking required. Salary: $125/week. Call Jill at 0000000.
IIIb. PLACING YOUR AD
Many people with a disability have an elaborate communication network for locating assistants. Several disabled people find that in large cities, they have had little response when advertising in the city newspaper. They prefer to advertise in more localized publications such as:
| Local newspapers | Library bulletin boards |
| College newspapers | Supermarket bulletin boards |
| College employment offices | Ethnic newspapers |
| Neighborhood newspapers or newsletters | YMCA/YWCA bulletin boards |
| Vocational rehabilitation agencies | Hospital bulletin boards |
| Church bulletins | Disability service organizations |
| Employment agencies | College dormitory bulletin boards |
| Consumer disability organizations | Independent Living Centers |
Do not list your address or give out personal information unless you are ready to schedule an interview.
In addition to placing ads in various locations, people with disabilities also rely on word-of-mouth to make their need for a PCA known. Talk to friends, neighbors, coworkers, relatives, medical personnel, social workers, other assistants, and other people with disabilities. Even if these people aren't able to help directly, they might be able to give you some good leads.
IIIc. SCREENING BY PHONE
Before you take the time to interview applicants, you will want to screen them by phone. You can give them a brief description about your needs, state the number of hours you need help, and how much you can pay. This is also a very good time to gather information about the applicant. You might ask very basic questions about the applicant's physical characteristics (height, weight, level of strength, etc.), whether or not he or she smokes, family makeup (does he/she have children? This is particularly important if you are looking for a live-in assistant.), work experience, special talents or skills (cooking, sewing, etc.) and long term availability. Spending a few minutes on the phone with someone can also give you information about the personality of the applicant. If the applicant sounds reliable and you feel there is a chance you will want this person to work for you, set up an interview to meet. Phone screening can decrease the number of interviews scheduled and increase the likelihood of success at finding an assistant that best meets your needs. If you are not happy with the phone screening or you know it will not work out, don't make an appointment for an interview. All you have to do is take their phone number and say, "I am doing other interviews, and I will get back to you. Even if you feel the applicant is not qualified for the job, thank them for calling.
IIId. INTERVIEWING
Once you
have located a potential candidate 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
questioning and/or demonstration, 2)
to allow the candidate to assess your specific needs, and 3)
to assess personalities and ability to work together.
For the most information, ask the potential PCA to complete an
application form followed by a face-to-face conversation. 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, driving record, and
references.
The following interviewing issues and techniques were compiled
by people who have used PCA's for a number of years:
IIIe. TRAINING
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 knowledge base of the PCA. Explain your routine fully and
in detail.
Emergency procedures should be discussed early in the relationship.
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 might be prone to. For example, if you have a spinal cord
injury, the PCA should be familiar with autonomic dysreflexia
and know how to treat it. In all cases, the PCA should know the
names and phone numbers of your doctor, an ambulance service,
the fire department, your pharmacy, and your closest relative
or friend.
IV. THE RELATIONSHIP BETWEEN YOU AND A PCA
Good or bad
relationships with your assistant 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 assistant
care you use, 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
the same values.
Besides possible conflicts caused by different personalities and
values, there are also situational conflicts. These are conflicts
that occur over specific incidents at specific times. Examples
of situational conflicts are shown below. How do you resolve these
conflicts? Each person's response to a conflict situation is important.
There are two different ways to respond to a situational conflict:
the non-negotiating response and the negotiating response. These
response patterns and their consequences are shown below:
Situation A: A PCA is helping a 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.
Non-negotiating response: The woman could respond either passively or aggressively. If the woman passively accepts her assistant's decision to choose another outfit for her, she loses the control over her own life and relinquishes her right to make her own decisions. This example does not require a negotiating response. The woman with a disability politely but firmly restates her wish to wear the wrap-around skirt and then she chooses for herself and feels good about herself. Someone with a disability has the right to select his/her own outfit without any explanation to a PCA, just as a person without a disability has the right to choose for him/herself.
Situation B: A man with a disability requests to go to bed later than his assistant who shares his apartment.
As you can see, it is not only 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. Remember, you can only control and be responsible for your own responses. Even if you are honest and direct, your PCA could respond passively or aggressively.
V. BACK-UP SYSTEMS
It is imperative
that you have a back-up plan in case the person scheduled to work
cannot make it. While a back-up plan can be crucial to one's survival,
it can be difficult to implement when needed. A back-up system
assures that you are able to remain in control of a situation.
If you have more than one person working for you, you can make
previous arrangements to see if they might be available occasionally
to provide back-up assistance. In addition, there may be several
sources of temporary back-up help available in your own community.
In large cities, medical personnel services are a prime resource
for nurse's aides and LVN's. Although these services can often
be expensive, the aids are usually available on short notice.
Another possibility includes nursing homes that might be willing
to refer aides who want to earn extra money during their off duty
hours. Once you have tested various back-up systems, it would
be a good idea to keep a running list of names and telephone numbers
of people you find to be reliable and the times that they are
available.
It is a common mistake for a person with a disability 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.
Terminating
an employee is rarely a pleasant experience. There can be many
reasons for terminating a PCA from consistent inability to follow
instructions, to consistent tardiness, to not showing up for work
at all. A key word here is "consistent." Generally, the PCA should
be told about an existing problem situation or behavior and then
be given a specified time in which to correct the problem. To
avoid misunderstandings about your expectations of an assistant
from the beginning of the relationship, it is a good idea to establish
a written contract. The contract is simply a way to be clear about
the expectations and responsibilities of an assistant and a person
with a disability.
Finding the words to tell someone you no longer need their services
is not easy. One woman with a disability says something like,
"This arrangement is not working out as I hoped. I feel that
I need to locate someone else who is more compatible to my lifestyle
and my needs." Unless the reason for termination is intolerable,
the PCA should be given one to two weeks notice of the end of
the job. Sometimes, your PCA will choose to leave at first sign
of dissatisfaction causing you to rely on your planned back-up
system.
If you are in doubt about whether or not to terminate your PCA,
consider this rule of thumb: if your assistant is consistently
interfering with or hindering your daily activities, then you
should think about finding someone else who is more compatible.
After all, the purpose of having a PCA is to enable you to live
a relatively normal life. If your PCA does not assist you in reaching
this goal, he/she essentially becomes another disability with
which to contend.
VII. MODELS OF PERSONAL CARE SERVICES
There are
different arrangements for personal care assistance that people
with disabilities have used who want to live more independently.
Basically, the models can be classified as: (1) private
or (2) shared attendant systems.
One-to-one attendant situations occur most frequently in
three settings: 1) with a disabled person who is living alone
in an integrated apartment complex or a house in a residential
neighborhood, 2) with a disabled person who is living with his
family or spouse and who has outside help for activities of daily
living, and 3) 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.
Another option that may be available in several communities across
the country is a clustered living arrangement. Groups of people
with disabilities with similar needs for assistance live within
close proximity to each other (for instance, in the same apartment
complex), and personal care assistance services are contracted
for the entire group. A disabled person might work with two or
more PCA's in one day, and PCA's are usually available 24
hours per day. Most systems of this type maintain a full-time
staff assistant manager who is responsible for scheduling and
supervising the PCA'S. Some clusters manage their PCA's system
through a board of directors and/or a grievance committee. Shared
systems imply that residents share responsibility for hiring,
supervising, and terminating PCA's.
There are several advantages and disadvantages with each system. Disabled 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 who live in a shared 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 disabled person while the shared system is usually available in a specific location such as an apartment complex. Some disabled people prefer the friendships and closeness of living around others with similar disabilities and needs; on the other hand, some disabled people feel more comfortable living alone and enjoy interacting with able-bodied neighbors. In a shared 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.
VIII. BIBLIOGRAPHY
