PAS
Independent living program (ILP) and peer-counseling course in IL center inform methods of independent living as knowledge. Personal assistant (PA) service should be provided together with these services for severely disabled persons. PA service plays a role to support life of PWDs when each PWD decides their objectives in life through ILP and peer-counseling. Since PA service is necessary to maintain independent living, any recognized problem in PA service has to be solved through methods of rebuilding human relationship by peer-counseling and problem solution by ILP.
Philosophy of personal assistant service
Major difference between general care service and PA service by IL
center is that while general care service targets elderly persons,
PA service is provided especially to PWDs. Care service for elderly
persons evaluates good credit to care givers if they give service
with consideration of preference ahead of request from users. On the
contrary, personal assistants in PA service by IL center listen to
requests from users and support what users want to do. In general
care service, care givers are the center of activities. On the other
hand, PWD users are the center in PA service.
In PA service, one of the purposes of assistance is to accompany with
young PWDs for that they can accumulate experiences in society and
grow up through failures and successes. Since assistance can lead
to PWDs’ acquisition of new knowledge and enhancement of the
sense of self-reliance for managing their own life, PA is very meaningful
work. This job, however, may sometimes stressful. This is because
PA service is user-centered. Some personal assistants already know
the result of behaviors that PWDs have not experienced yet. However,
personal assistants have to reserve their intervention even they know
better ways of behaviors, and leave behaviors to PWDs’ subjectivity.
Hence, PA service is sometimes stressful to personal assistants.
In comparison with care service to elderly persons, PA service needs
to spend longer hours for observation or escort of users. Sometimes
personal assistants have to commit to long-hour assistance and night
shift.
Personal assistants also sometimes play a role to bridge communication
for those who have difficulty in communication due to language or
intellectual disabilities. Personal assistants support to inform users’
will to other persons with understandable manner. This kind of support,
however, requires certain amount of experiences in order to inform
other persons not from the standpoint of personal assistants but as
users’ own words. Hence, personal assistants have to brush up
their skills constantly.
It is better that same organization provides both PA service and ILP/peer-counseling.
This is because PA service section can share problems with peer-counselors
and PWD staff for ILP, and work for solution together. Some organizations,
however, provide only PA service that is coordinated by non-disabled
staff. From these organizations, one can see many examples of which
their PA services became authoritative and protective that interfere
PWDs’ empowerment.
System of PA Service
When IL center received a request of personal assistants, coordinator
of PA service and peer-counselor make a team and visit to PWD’s
house at first. There, they interview to gather necessary information,
such as, what types of PA service is necessary in which hours in a
day, or what is necessary PA service in monthly unit. They also ask
questions, for example, usage of welfare equipments, available assistants
from family, housing renovation that was already made, or degree of
utilization of public welfare services. Presence of peer-counselor
in interview is important because it becomes possible for PWD to inform
and ask about some sensitive issues such as, bathing or toileting,
with relaxed atmosphere. Consultation with peer-counselor also leads
to recognition of hidden needs.
After the interview, they return to IL center and hold a meeting with
other coordinators and peer-counselors. In the meeting, they discuss
whether completion of PA service is possible within current registered
personal assistants and other resources. If difficulties are found,
the meeting also make decisions, such as, calling for help from other
organizations, or recruiting new personal assistants, for realization
of service.
After the meeting, coordinator chooses the most suitable personal
assistant with consideration of some elements, such as, user’s
needs, personal characteristics, and distance of houses between user
and personal assistant. Then, coordinator brings personal assistant
to user’s house and teaches how to assist. If personal assistant
cannot learn at a time, trainings should be held twice or three times.
At the time of personal assistant reaches to satisfactory level for
user, IL center offer continuous commitment to assistance.
If personal assistant has health or other problem and finds out difficulty
in continuing assistant job during contract term, IL center has to
dispatch a person for substitute. In case of emergency, coordinator
goes to user’s place as substitute. In case of long-term contract,
IL center has to find other personal assistant for replacement.
Sometimes user and personal assistant cannot communicate well. Or
claims are raised from either side. In such cases, problems are discussed
and scrutinized at the weekly meeting by coordinators and peer-counselors.
The meeting indicates solutions. Then, peer-counselor consults with
PA user, and coordinator to personal assistant, respectively. Through
consultations, they accommodate problems. Please remember that the
purpose of consultation is to seek for better solutions for both side
in order to maintain provision of PA service. If trying to punish
either side, coordination may end up with failure.
At the end of month, user of PA service has to submit the monthly
usage report about amount of PA service to IL center. Based upon the
report, IL center makes out invoice and collects service fee from
user. Sometime in the early part of next month, salary is paid to
personal assistant at the office of IL center. At that time, coordinator
asks personal assistant to inform about any problems in PA service
and requests to IL center. Feedback from personal assistant is significant
opportunity for IL center to grasp any change and problem in PA service
in a month.
Volunteer- and Paid-systems
Equal relationship between user and personal assistant is ideal for
IL center. For a long time, PWDs have had to rely upon volunteer assistants.
Since they have to rely upon good will of volunteers, many PWDs have
felt hesitation or even the sense of guilty whey they ask some assistance.
It is true that many of them have also felt that they had better not
to do anything if they bothered other persons and spent inactive life.
Despite of such problem, however, IL center at initial stage may have
to use volunteer-based PA service by necessity when public support
for PA system is not established yet. In such situation, IL center
have to be really careful to establish and maintain equal relationship
between users and personal assistants. For this purpose, staff of
IL center constantly have to discuss how to train personal assistants
and their mental attitudes. IL center may also need to care for certain
issues about assistants, such as, fees for transportation and meals.
It is also necessary for IL center to be careful about sexuality of
user and assistant. It is often reported that some provision of PA
service, especially in rural area, use assistance in different sex
due to difficulty in finding male personal assistants. Assistance
in different sex, however, often cause of troubles. Hence, IL center
should cling to assistance in same sex as general rule.
When PWD receives assistance, he/she owes certain sense of debts to
personal assistant. In volunteer-system, PWDs have paid debts by saying
“thank you” or “I am sorry for bothering you.”
For PWDs, however, asking volunteers for a long period, such as, asking
to wake him/her up 7 o’clock every morning for a year, is surely
heavy psychological burden. In such situation, paid-system of PA service
is the most effective method to reduce psychological burden because
PWDs can pay back debts by cash. There are some other merits in paid-system.
For example, IL center can establish equal relationship between users
and personal assistants by users having rights to dismiss bad personal
assistants and maintaining employment of good assistants. Paid-system
also has merits in recruiting personal assistants for difficult or
severe assistance as paid work. Some PWDs may have difficulty in recruiting
personal assistants in volunteer system. In paid-system, however,
such difficulty is also resolved.
Due to above reasons, PA service with paid-system is ideal for IL
center. For realization of paid-system, IL center(s) have to negotiate
with public administration for establishment of institutionalized
public support for PA service. This negotiation is necessary because
there is difficulty for IL center sustaining this system only by its
own resources.
Fee for PA service are used for labor cost. Hourly wage of personal
assistant is set within payable amount in society. Both developed
and developing countries have their own standards of payable amount.
Hence, it is misunderstanding that only society of developed country
can establish paid-system of PA service.
Unlike the establishment of residential institutions, PA service does
not need huge amount of financial resources for operation. Any IL
center can begin PA service immediately if service is provided as
a model case.
The role of IL center is to launch a model case of PA service. It
is better for you to consider that the establishment of institutionalized
PA service system is the role of state or local administrations. For
the establishment of the system, however, IL center as social movement
organization has high responsibility to negotiate with state or local
administrations. Without activities as social movement organization,
PA service is remained as model case and cannot save many ordinary
PWDs.
Recruitment of Personal Assistants
PWDs tend to prefer personal assistants from young part-time workers
or students rather than senior persons. Such preference may cause
from that many PWDs feel assistance from senior persons as if they
are put under custody or control of parents. On the other hand, PWDs
feel easier to manage and give instructions to younger personal assistants.
It is also easier for them to say opinions and complaints. Active
PWDs may also prefer young personal assistants because they can go
out together for activities, such as, sports, hiking, walking town,
or watching movies.
Recruitment of personal assistants mainly targets students and young
part-time workers. For recruitment, we ask to universities to put
up posters on bulletin boards, and hand out leaflets on a street or
in front of a station. We also ask to university instructors for letting
us speak during lecture hours about necessity of personal assistants,
or ask some other persons to notice their friends about recruitment.
Putting up posters in town, or use of media, such as, community magazines,
newspapers, journals, or radio-television is also effective method
for recruitment.
After receiving a phone-call for application, IL center organizes
a briefing session within a week. In the session, we explain philosophy
of PA service by IL center, wage and transportation fee, and very
basics of assistance such as how to push a wheelchair. Those applicants
who understand and agree with the contents of PA service register
to IL center as members of PA service.
If a PWD personally wants to recruit assistants, IL center can also
assist that person. In such case, that person pays fee to IL center
for advertising. IL center can be a site for contact and interview
of applicants, and assists training of personal assistants.
Role of Coordinator
Coordinators stay at the office of IL center and coordinate PA service
based upon requests. They also take in charge of following works:
organization of interview with new users; introduction of new personal
assistants to users; substitute of personal assistants in case of
emergent requests of PA service for night or weekend. Coordinators
have to memorize every location of user’s house and grasp all
the contents of assistance. Coordination between users and personal
assistants is especially significant work of coordinators. They spend
considerable amount of energy for coordination in order to respect
wills of both users and assistants as well as not damaging anyone
in PA service.
Coordinators also have to take in charge of various office works,
such as, preparation of PA training meeting, management of office
documents, organizing assistance records, arrangement of monthly PA
schedule of each user, collection of service fee from users and payment
to personal assistant.
Generally, more than three male and three female coordinators work
as a team. In order that all coordinators can respond to any problem,
they have to share information. For example, responsible coordinators
in certain work period inform to next coordinators in charge about
requests of assistance and troubles that they received. Both male
and female coordinators are necessary for IL center because there
are various issues which are preferable for users to speak to coordinator
with same sex.
Role of Peer-counselor
Peer-counselors with other staff with disabilities participate into
coordination meeting that is held once in a week at IL center. They
lead the meeting in terms of PWDs for the provision of PA service
based upon user’s will. The meeting sometime reports certain
problems, which are derived from the user’s lack of social experience
or excessive preference to specific personal assistant and difficult
to be solved only with the effort of personal assistants. Along with
coordinators, peer-counselors seek for solutions of such problems.
Peer-counselors also work with users who have difficulty in using
personal assistants. Generally, IL center asks users to take peer-counseling
and independent living programs before they begin independent living
with PA service. However, sometimes there are users who have already
began independent living without taking these programs. Since some
of them still have not been able to accept their disabilities or cannot
consider of situations of personal assistants, they often have difficulty
in using assistants. Some of them spent more than 20 years in residential
institutions or family home and also have difficulty in using peer-counseling.
Peer-counselors and staff of IL center consider that their difficulties
are not attributed to themselves but derived as social problems, and
work with such users by taking plenty of time.
Coordination Meeting of PA Service
Coordination meeting is held once in a week. In the meeting, coordinators
report problems, which were happened in previous week and necessary
to be shared with all staff members. Through the solutions of these
problems, certain rules can be composed in order to respond to specific
needs of users, even though IL center is not willing to decide rules
that is applied to whole PA service. Examples of specific rules discussed
at coordination meetings are following: Those who serve to night shift
can take half-day off: If assistance to bathing is burden to a single
personal assistant, his/her burden should be reduced by increasing
the number of assistants to two: Different wage should be applied
when personal assistants accompany to one week trip of users. Coordination
meetings have also discussed following points: Who would pay meals
of personal assistant if shift of assistance covers meal time: Who
would pay transportation and entrance fees: How to deal with absence
of student personal assistants during long school holidays and at
the end of school years. Employment about new staff of IL center is
also discussed at coordination meetings.
Training of Personal Assistants
IL center organize training meeting of personal assistants once in
a month. In the morning section of the meeting, philosophy of personal
assistance, necessary attitude of personal assistant, way of assisting
persons with cerebral palsy, muscular dystrophy, and cervical cord
injury. During lunch hour, participants assist taking meals each other
and have experience as users. In the afternoon section of the meeting,
participants push wheelchair one after the other and have training
of assistance of outing even sometime by boarding on a train.
In case of difficult assistance based upon personal needs of users,
specific trainings are organized at user’s house. For example,
for assistance of users who use ventilators, training of how to operate
ventilators and how to vacuum up sputum is held with instructions
from doctor or family members. Assistance for bathing needs user by
user training because ways of bathing differ greatly in users.