1. Self-Advocacy & Advocacy: What to say, do and teach!
Jennifer Niec, LMSW, CBIS
Saturday May 13, 2017

2. What is Self-Advocacy?
Self Advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert their own interests, desires, needs and rights
To make informed decisions and taking responsibility for those decisions
Understanding your strengths and weaknesses
Developing Personal Goals

3. What is Self-Determination?
The power of oneself to make their own decisions
The process in which a person controls their own life
The act or power of making up one's own mind about what to think or do, without outside influence or compulsion
You need Self-Determination
to be a Self-Advocate!!!

4. Who is or can be a (self)-advocate?
YOURSELF!!!!! First and foremost
A Durable Power of Attorney when you no longer have the capacity to be your own advocate.
Guardian
Parent

5. What does it take to be a Self-Advocate?
Being a effective self-advocate takes strength, knowledge and determination of a person!
KNOW Yourself
Know WHAT you need
Know WHEN you need it
Know HOW to what you need and/or want

6. Know Yourself… The journey of knowing yourself is an ongoing process
You change over time as do your needs, wants and desires
Your personality changes as you encounter life experiences
Your responses change over time as you prioritize your life differently
Taking an aptitude test, achievement test or individual counseling can help you understand yourself better and therefore become a more effective self- advocate…

7. Know what you need…
Know your interventions
Increased knowledge
Benefits and risks
Know what accommodations you will need
Tools to help you accomplish your goal
Things that compensate for disabilities or shortfalls
Know what modifications you need
Alterations to complete the overall task
This is NOT “special treatment”
As a baseball player would use a bat a patient who is wheelchair bound needs a ramp!!!

8. Know How to Get what you Need…
Become familiar with the Americans with Disabilities Act of 1990
Guarantees equal access and opportunities to individuals with physical and/or hidden learning disabilities that significantly interfere with one or more major life activities.
Keep a journal
This will help significantly if a complaint needs to be filed or you need evidence to support your requests
Network
Reach out to others who have gone through similar situations to learn from their mistakes and successes
Stay Educated
Review journal articles, medical advances and talk to experts

9. Brain Injury and (Self) Advocacy…
Many patients who suffer a TBI/ABI will need a designated advocate initially
This may be a DPOA, guardian, surrogate decision maker or next of kin
Their roles and responsibilities may include
Deciding appropriate medical interventions
Providing a history to better treat the patient
Observing care of patient and reporting concerns
Educating themselves on the patient’s injury to respond to the doctors better
Ask questions
Listen to clinicians
Emotionally support the patient
Handle finances to ensure resources are available when patient recovers

10. “RECIPE” to teach (Self) Advocacy…
First, LISTEN to your patient
Second, VALIDATE their frustrations, concerns and worries
Third, EXPLORE options to accommodate them
Fourth, PROVIDE encouragement to continue to request accommodations and modifications
Fifth, ADVOCATE for the patient with the appropriate team members
Sixth, REPEAT as need 

11. Examples of Advocacy in your Daily Work…
A patient starts yelling and demanding a pain pill when you have just spent 40 minutes passing medications to patients at 7:00am.
Listen to where their pain is
Validate their feelings of uncomfortableness and pain
Explore different pain medications, modalities (heating pad) or timing of administration
Provide instruction such as when “If this new plan is not effective when then nurse returns in the morning, make sure you let them know so that can help you develop a different plan.”
Advocate with the doctor to get a different plan in place
Repeat next day at 7:00am if needed 

12. Examples continued…
A patient adamantly refuses to participate in a therapy technique and become angry and states “This is stupid, this will never work.”
Listen to why they do not want to do the activity
Validate their frustrations and decreased knowledge of benefits
Explore scientific and/or proven reasons why this is appropriate
Provide alternative techniques to reach the same goals
Advocate for patient to continue to be involved in their treatment plan
Repeat during next therapy session if needed 

13. Examples continued…
An employee is new to the agency/hospital and keeps missing the important daily huddle and staff state “Let’s just continue because they never come anyway!”
Listen to the frustrations of the team members
Validate their concerns for the lack of involvement
Explore options to increase participation and/or barriers for not attending
Provide education and reminders to that team member of the importance of daily rounds
Advocate for all team members to attend daily rounds
Repeat daily if needed 

14. Community Advocacy…
As professionals it is our responsibility to advocate on a larger level.
We cannot make change in our small population without advocating on a bigger scale.
Involve yourself in a community group that you have a connections with either personally or professionally.
Be mindful when attending conferences and seminars of how it can apply to your workforce and begin discussion amongst your colleagues.

15. The Better you Understand your disability/problem, needs and rights, the Better you can Communicate and the Easier it will be to Self-Advocate.

16. References http://www.headinjury.com/advocacy.htm
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