Self-Advocacy and Negotiations (#1083)
Thursday, July 26, 2007
By
Pat Risser (parisser@att.net)
and
Scott Snedecor (Scott.Snedecor@state.or.us)
The consumer-driven self-advocacy movement for recovery and transformation has awakened the need for change at all levels of the mental health and substance use system. One particular call for change encourages consumers and their families to become advocates for their rights and treatment needs. This interactive workshop will engage participants in identifying and developing strategies for self-advocacy and negotiation within the mental health and substance abuse system. Topics will include developing tools for active participation in the treatment team and treatment planning process. Role-play and other forms of practice will help to reinforce these tools and strategies. There will also be a discussion of the consumer-driven progress accomplished thus far, and areas of yet-needed change for achieving true systems transformation.
Learning Objectives:
- Describe various ways in which a person might be
an advocate
- Explain three tools of negotiation
- Describe skills for accomplishing positive change
Self-Advocacy
Self-Advocacy means working by yourself, or with someone's help, to
get what you need. Self-advocacy
at it's most basic means standing up for yourself.
Freedom Self-advocacy
curriculum can be found at:
http://www.mhselfhelp.org/freedom/index.html
Important Points of
Self-Advocacy
ÿ Kno
w
and assert your rights
ÿ Write
and maintain an "advance directive"
ÿ Research
your medications and keep records of what you've used
… ask a pharmacist for fact sheets
or "drug insert" information
… talk to other people who have
used the same medications
… at clinics
… drop-in centers
… self-help groups
… on the internet
… look in the PDR or similar books
ÿ Take
an active role in your own treatment
ÿ Take
a class in "Assertiveness" training
ÿ Know
what's in your medical records
You may want to question because
of:
… Feelings that treatment is (or was) inadequate;
… Concerns that emotional problems have been incorrectly
diagnosed;
… Worries about information that might be shared with other
parties such as insurers;
… Being told that certain medications/treatments are required
(or not permissible); or
… Wanting to leave (or continue) hospitalization.
In many states, people have the
right to see their own medical records, unless viewing the records would be
harmful. This is a vague standard
and is often invoked to deny access to records. Other factors that might be covered by your state's law include:
… Whether the right is invoked during or
after treatment;
… Whether the records are held by a
state-funded facility;
… What type of facility holds the records
(e.g., hospital or personal care home);
… Whether the records are medical,
psychiatric, or personal data; or
… Whether consumers have the right to
correct the records or append information.
An Overview of Self-Advocacy Skills
Problem Solving
1. Break the problem down
into smaller pieces.
2. Find out who's causing
the problem.
3. Set a goal for what you
want to happen.
4. Develop an action plan.
Verbal Communication
1. Outline what you want to
say.
2. Practice saying it.
3. Have a support person.
4. Be
assertive—insist on what you want.
5. Don't attack or insult.
6. List
en actively to the
other person.
7. Negotiate for what you
want.
8. Keep records.
9. Follow up.
Verbal Communication
(Face to Face)
1. Be on time!
2. Sit up straight.
3. Don't fidget.
4. Dress and groom neatly.
5. Maintain eye contact.
Self-Advocacy Skills
®
Believe in yourself as
someone who is worth self-advocating for.
®
Improve your
assertiveness skills by working with other people to improve these skills.
®
Take every opportunity
to educate yourself about issues at local, regional, state and national
meetings.
®
Create your own resource
library and contacts list. Use the Internet at your library to do research.
®
Save all documents related to health
care, insurance, benefits, income or laws and regulations.
®
Get information about
diagnoses, treatments, and medications.
®
Learn your rights (check
with your local Protection and Advocacy)
®
Read every viewpoint,
and then decide for yourself what you want to do. Form your own opinions and
develop your own goals.
®
Problem solve: break
down the problem into smaller problems or steps.
®
Develop a solution-
determine what you want to happen.
®
Develop a plan for handling
the obstacles that you encounter.
®
Plan a strategy- consult
with others who may be more objective.
®
Spend some time
reflecting on your plan before you do it. Do not act impulsively.
®
Take into account
various problem solving strategies:
®
Making phone calls
®
Holding an informal
meeting
®
Writing a letter of
complaint
®
Filing a formal
complaint
®
Contacting key officials
®
Going to city or county
council meetings
®
Write letters to the
editor
®
Write letters to your
legislators, senators and congressman
®
Treat others with
dignity, compassion and respect; listen to their views and challenge them when
necessary.
®
Insist that others treat
you well, even when you are saying things that they don't want to hear.
®
Stay as calm as possible
when speaking out. If you "lose your
cool" you will be accused of being "just another mental patient." You can let your frustrations out when
you are alone or with good friends.
®
It takes many people
to create a system change, not just one very strong individual. Beware
of people who want to be the only one in charge or speaking out. Circumvent them as kindly as possible.
®
As you find your voice
you may be tempted to go on and on.
If you do this, you silence the voices of others that also need to be
heard. It is the voices of
many, not just one, that will make the difference!
Self-Advocacy in Person
When preparing to meet
with someone in person:
®
Write down the
appointment as soon as you make it.
Once you schedule the appointment, you have to keep it. The person you are meeting with may
have other commitments; if you do not keep your appointments, that person may
decide to spend more time with people who are keeping their appointments and
following through.
®
If you absolutely cannot
make a scheduled appointment, call in advance to reschedule. Try to give the other person as much
notice as possible; you should not cancel a meeting on the same day unless it
is a sudden, unanticipated emergency.
®
When you schedule the
meeting, inquire if there is any type of documentation that you will need to
bring to your meeting. Ask if you
must meet certain qualifications in order to get what you're asking for. If the other party initiated the
meeting, make sure that you understand the purpose of the meeting completely.
®
Another important step
in planning for a meeting at which you will advocate for yourself is to find a
friend who will come with you. The
presence of another person will help to assure that the people you're meeting
with behave in a civil fashion.
®
In preparing for the
meeting, think ahead about
®
What do I want to happen
at the meeting?
®
What do I want to learn
at the meeting?
®
What could happen as a
result of the meeting?
®
Think through your
strategy for the meeting. You
should prepare an agenda for what you would like to say, what you would like to
ask the other person, and how you would respond to the other person's
suggestions of what they might like to happen.
®
Bring to the meeting
copies of all relevant documents.
If you will be citing particular laws or regulations, bring photocopies
of those as well. Don't just say,
"There's a law somewhere." Give
the person a chance to look at the law.
By demonstrating that you know your rights, it makes it much more
difficult for the other person to ignore your rights. It also often makes them treat you with a more respectful
attitude in negotiating for what you want to come out of the meeting.
At the meeting:
®
Show up on
time!!! Dress and groom yourself appropriately for the
meeting. It results in you being treated with more respect and gives
the other person less power in the situation.
®
Shake hands firmly while you look the other person in the eyes.
®
Do your best to
maintain eye contact. It helps you to maintain control over the meeting.
®
Use good
posture. It conveys confidence in what you are seeking and
shows respect for the other person.
®
Try not to fidget. Wringing
your hands or squirming in your chair conveys your nervousness, making the
other person feel more confident in his position. You can practice
body language skills before the meeting.
®
Ask for clarification
if you do not understand something. Restate the other person's position so
that you both understand what the other person is offering or requiring.
®
Take careful notes of
what is said. Write down:
®
Any promises the other
person makes
®
Any actions that you
must take.
®
Any explanations the
other person makes for granting or denying your requests
®
Anything the person says
that is supportive of your position.
Self-Advocacy in Writing:
® The shorter the letter, the better. Keep a copy or photocopy in your files.
® Follow the standard format used for business letter. Include your return address, the date, the other person's address, a greeting, and signature. You may want to "cc" the letter to the person's boss; if you do not "cc" someone, it is easier for the person to put your letter aside. However, doing so before you give them an opportunity to resolve the problem may show anger on your part, and end up hurting you.
® Open the letter by explaining to the recipient why you are writing.
® Pay attention to the tone of your letter; do not be rude or insulting. Simply state what is wrong and what the recipient can do to rectify it.
® Include photocopies of relevant documents, or offer to provide whatever documentation may be necessary.
® Explain the reason why you are asking for action by the recipient.
® If the action needed is urgent, explain why.
® If applicable, summarize the steps that you have taken to try to resolve the problem.
® If you are considering legal action or a formal complaint, note that you are considering it. However, reserve this tactic for situations in which you feel that you have a valid case and could follow through; other wise, the other party could call your bluff.
® In the closing paragraph, give a time by which you expect the recipient to respond or take action. This should be a reasonable amount of time in relationship to the urgency of the situation.
® Also, in the closing paragraph, thank the recipient, or if the recipient has not proven helpful so far, then express your hope that they will resolve the matter as soon as possible.
® For a few extra dollars, you can send your letter via certified mail, return receipt requested. Not only will this make your letter stand out to the recipient, the recipient will know that you will have proof when the letter arrived.
® Do
not hesitate to ask a friend to check your letter for errors in spelling or
grammar; also their objective advice can help assure that the letter is less
antagonistic.
® One
source of assistance in letter writing may be your state Protection and
Advocacy system.
Hints for Writing a Better Letter
u
Follow standard format. Include your name and return address, as well as that of
the person receiving the letter.
u
Explain what you want. Don't just complain; suggest a solution.
l
Open by explaining to the recipient why you are
writing.
u
Include documentation. Send a photocopy whenever possible.
u
Explain reasons action is needed. Explain why the problem is harming
you.
l
Explain the reason why you are asking for action by the
recipient.
l
If the action needed is urgent, explain why.
u
Explain steps you've taken. Show that you're working toward a
solution.
u
Set timelines for response or action. Show that you mean business.
l
In the closing paragraph, give a time by which you
expect the recipient to respond or take action. This should be a reasonable amount of time in relationship
to the urgency of the situation.
u
Watch your tone. Don't threaten or insult.
l
Also in the closing paragraph, thank the recipient, or
if the recipient has not proven helpful so far, then express your hope that
they will resolve the matter as soon as possible.
l
When writing your letter, pay special attention to your
tone. Put yourself in the place of
the intended recipient. Respect
their point of view. By not antagonizing or insulting the recipient of the
letter, you reinforce that you are in the right and that your request should be
granted.
u
Keep a copy.
Good record keeping is important.
u
Proofread!
Ask a friend if you need help.
l
You shouldn't hesitate to ask friends for help in
writing letters. You can rely on
friends to help with the writing and to check your letters for errors in
spelling or grammar. Having
someone else to be supportive and objective can help make the letter less
antagonistic.
u
Send the letter. For a few extra dollars, you can send a
letter via certified mail, return receipt requested. Not only will this make your letter stand out to the
recipient, you'll know exactly when the letter arrived. Depending on the severity or urgency of
the situation, you might also consider faxing your letter or using express
delivery.
Self-Advocacy on phone
®
Be assertive by being
persistent enough to get in touch with someone who can help you. One
alternative is to call once a day until they realize you won't stop calling
until they resolve the situation.
®
Being a persistent and
tireless advocate for yourself does not give you the right to shout at, insult,
or attack the character of others. Assertiveness is being able to say what you
need in a respectful and dignified manner. If needed, use your support group or therapist to work on
controlling your anger. By managing your anger, you can avoid a developing
reputation as a "difficult caller."
Being assertive without raising your voice or being rude is a skill of
an effective advocate.
®
Keep accurate and
complete records of your telephone conversations. Often your
records will be the best documentation of your attempts to resolve a situation
or of another party's suggested solutions. Keep an accurate record of every person with whom you speak,
their name, title, and what they said.
Sometimes it will str
engthen your position if you can demonstrate that
the other party was not helpful, so document every time that you couldn't get
through to someone on the phone, as well as when you left messages for that
person. Doing so will prevent
someone from saying that your inactivity is the cause of the problem. Use the Sample phone log as your guide.
®
Ask for clarification if
the person says something you do not understand. Leave the door open; state that you would like to reserve
the right to submit additional information. Do your research and know the standards: "My insurance policy says that I have
the right to appeal this decision, and I would like to appeal."
®
If the person to whom
you are speaking cannot meet your request, or fails to resolve your problem to
your satisfaction, ask to speak with that person's supervisor. Go up the chain of command slowly;
going to a supervisor before giving someone a fair chance to resolve your
problem can create bad feelings.
If you go up the supervisory ladder one level at a time, you give more
people the opportunity to give you what you want. If you go straight to the top, and that person says
no, you probably won't get what you're after.
®
If the person cannot
respond to your request immediately, ask when they will get back to you, and
the date on which you can expect action on what you've requested. If the person promises a specific
action, ask when that action will be taken. Record this information in your phone log.
®
Mark a calendar to keep
track of dates when action is promised. If you have not heard or seen results
by the agreed upon date, you should call back. Be polite, but firm. Remind the person that he promised to
respond or take action by a certain date, and ask why this has not happened.
®
Seek a new contact
person if the one with whom you have dealt:
®
Is new to the job based
on what the person has said or your best guess
®
Has not gotten in touch
with you after you have left three messages
®
Has told you three times
he must appeal to a supervisor for information or authority, without results
®
Hesitates before
answering important questions
®
Asks you to supply the
same information or file the same forms more than once
®
Or is defensive, moody,
or combative without being provoked by you.
®
One way to ensure your request gets
special attention is to follow a phone call with a fax summarizing the action
requested and the agreed upon follow up.
If the person does not seem to be responding adequately, send the fax to
the person you have spoken with and also to his supervisor. At the bottom of the fax, write "cc:'
followed by the supervisor's name so that the employee knows that the
supervisor has also seen the fax.
Self-Advocacy Negotiation:
®
Lead with the
strongest part of your argument. If you are dissatisfied with the treatment you are
receiving, you might start by pointing out that a staff person has violated
your patients' bill of rights.
®
Keep your
presentation short by focusing on the facts. Often, we want to tell
our life story when we are trying to spur people to action. But by taking too much of someone's
time, you run the risk of alienating that person. Instead, focus on details that are the responsibility of
that person. In other words, if
you are experiencing problems with a certain program or service, focus on that
program or service rather than other problems that you might be experiencing.
®
Focus on remedies,
not complaints. Unless your goal is
to simply make someone feel sympathy for you, then you should have an action
plan for what you want to happen.
®
Control your
emotions. No matter how much the other person upsets you, don't
resort to yelling or name-calling.
If you need to ask for a break to compose yourself, do so. "Blowing up" during the meeting
reflects poorly on you, and often gives people an excuse to deny what you want.
®
Have in mind a
minimum that you are willing to accept.
To be a good negotiator, you
should ask for more than you really want, but keep in your own mind a minimum
that you would be willing to accept.
®
Acknowledge the other
person's position. Demonstrate that you understand the limitations faced
by the other person. This will
help keep your demands realistic and make the other person feel more
comfortable in negotiating with you.
®
Reiterate your
position using "I" statements. Say
"I need a medication with fewer side effects" or "I need a safer place to
live."
®
Give the other person
a reason to want to help you. He might want to avoid complaints to
his supervisor, negative publicity, liability issues, or just give in to stop
hearing from you.
®
Ask for the chance to
offer additional information at a later time. Meetings sometimes put pressure on us, making it
difficult to remember everything we wanted to say. You might wish to reserve the right to provide additional
comments later.
®
Restate any actions
decided upon. If the other person makes any promises to you, restate
them as you end your meeting. If
you make promises, restate those as well, so that you are sure of what you need
to do.
®
Set a timeline for
action. A promise to " look into the problem "or "get to it as
soon as we can" doesn't help you much.
Insist on a timeline for action, then contact the person if deadlines
are not met.
®
Be prepared to walk
out without resolving the issue. If the meeting is not going well, don't agree to
something just because of the urgency of the moment. Be prepared to politely get up and walk away.
®
After the meeting,
write a short letter thanking the person for his time. In
your letter, you should also restate any agreements that were made in the
meeting. Read over your meeting
notes and make sure you understand them.
Keep your meeting notes with other documentation, such as copies of
letters and your phone log. If the
person with whom you met promised results by a certain time and these things do
not happen, then you should contact the person. When you call or write to the person, be sure to refer to
the date of the meeting and restate what you had agreed upon.
Common Obstacles Faced by
Mental Health Consumers
ÿ You
wanted to change your psychiatrist or therapist, but you were told that you
could not do so.
ÿ You
were trying to go back to work, and someone asked questions about your medical
history.
ÿ You
wanted to leave a hospital, but you were told that you were not ready.
ÿ You
wanted housing, but you were told that none was available.
ÿ You
wanted to change your case manager, but you were told that you couldn't.
ÿ You
needed to take time off from a job, but your employer wasn't understanding.
Responses to Obstacles
ÿ Do
research to support your position
ÿ Learn
Self-Advocacy Skills
ÿ Treat
others with dignity, compassion and respect; listen to their views and
challenge them when necessary
ÿ Insist
that others treat you well, even when you are saying things that they don't
want to hear
ÿ Stay
as calm as possible when speaking out.
If you "lose your cool" you will be accused of being "just another
mental patient." You can let your
frustrations out when you are alone or with good friends.
ÿ It
takes many people to create a system change, not just one very strong
individual. Beware of people who
want to be the only one in charge or speaking out. Circumvent them as kindly as possible.
ÿ As
you find your voice you may be tempted to go on and on. If you do this, you silence the voices
of others that also need to be heard.
It is the voices of many, not just one, that will make the difference!
WEB SITES: