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

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

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!!!

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

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

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…

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!!!

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

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

“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 

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 

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 

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 

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.

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

References http://www.headinjury.com/advocacy.htm http://accessproject.colostate.edu/presentations/udl/consortium/LeeShare_generated /html http://www.wrightslaw.com/info/sec504.selfadvo.nancy.james.htm http://braininjurynetwork.org/braininjuryadvocacy.html