Presentation given at ACT\'s Self-Advocacy Conference

1. Advocating for Your Care “Learning As We Go-Go-Go” 2011 Self-Advocacy Conference Darrell Paulsen and Nikki Villavicencio

2. Why Advocate for Your Care? Gives you more independence! Helps you gain the confidence to speak up for yourself in other situations Simply: It is YOUR care and no one else knows it like you do

3. How Can You Advocate for Your Care? With your doctor With your family With your Personal Care Attendants (PCA)

4. What is a PCA? A Personal Care Assistant (PCA) is an individual, trained to help people with basic daily needs. “A PCA may be able to help you if you have a physical, emotional or mental disability, a chronic illness or an injury.” The PCA Program provides services to people who need help with day-to-day activities to allow them be more independent in their own home. http://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&dDocName=id_003867&RevisionSelectionMethod=LatestReleased

5. What are the Day-to-Day Activities? Physical Needs Eating Toileting Grooming Bathing Dressing Transferring Positioning Mobility Other Complex Health-Related Activities Practical Needs Meal Planning/Preparation Managing Finances Grocery Shopping Household Chores Communication Assistance Participating in Community Activities Behavior Assistance http://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&dDocName=id_003867&RevisionSelectionMethod=LatestReleased

6. PCA Experience: Beginning to End Assessment Gaining a PCA Balancing Your Life Work Transportation Social Life Relationship with PCA Relationship with Partner Letting Go

7. Assessment Public Health Nurse (PHN) comes to your home PHN asks you about you and your disability(ies) In this situation, it is best to be completely honest with the PHN! If you exaggerate what your ability is, you will not be assessed properly.

8. Gaining a PCA If you have PCA traditional, your agency will pick your PCAs for you You can let them know if you have any preferences In Example: I prefer only women. If you have PCA Choice, you will hire your own PCAs Word of Mouth Family/Friends Place an Ad

9. Balancing Your LifeWork PCA services allows people with disabilities, the ability to work. According to DHS, ¼ of consumers of PCA services work. Only 22% of those workers use their PCA hours during work. Ways your PCA can assist you at work: Eating Communicating Toileting Transporting to and fro Winter Dressing Other Health-Related

10. Balancing Your LifeTransportation On Metro Mobility and City Buses PCAs ride for Free, all of the time! It is a vital connection to the community Work/School Doctor Appointments Social Events Church Grocery Store

11. Balancing Your LifeSocial Life When planning social events, communicate ahead of time your strategy on how to still receive your cares and still have fun. i.e. During an evening event, I will meet up with my PCA for a bathroom break for 20 minutes, then for bed my PCA will come for only one or two hours. Because my PCA is traveling more than usual, my PCA and I will mutually adjust the schedule for that day. Be mindful of Time and Parking.

12. Balancing Your LifeRelationship with Your PCA When you first meet with your PCA be very clear about your expectations and ask them what their expectations are as well. i.e. If being on time is very important to you, make sure you let them know that and why Be consistent with what your expectations are Boundaries are very important! PCAs are not your friends-This is their job and these are your needs If something bothers you, let them know (gently) right a way! Letting it go, will usually only make it worse

13. Balancing Your LifeRelationship with Your Partner Sexuality is an important, normal aspect of life. Communicate with your PCA, ahead of time, that they are walking into your private life. Spontaneous lovemaking and privacy if timed to PCA assistants schedules is sometimes lost. Be mindful of sharing too much with PCA, because it blurs the lines of boundaries.

14. Balancing Your LifeLetting Go It is inevitable: At some point, you will have to let go of a PCA! Try not to be too disappointed Do not feel bad, just because you like your PCA as a person, does not mean you will work the best together. Do not have unreasonable expectations of seeing your PCA after you let him/her go. According to DHS, in 2003 47% of PCAs that quit, was due to finding another job that pays more.

15. Questions??