Advocating For Your Care


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Presentation given at ACT\'s Self-Advocacy Conference

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  • Advocating For Your Care

    1. 1. Advocating for Your Care<br />“Learning As We Go-Go-Go”<br />2011 Self-Advocacy Conference<br />Darrell Paulsen and Nikki Villavicencio<br />
    2. 2. Why Advocate for Your Care?<br />Gives you more independence!<br />Helps you gain the confidence to speak up for yourself in other situations<br />Simply: It is YOUR care and no one else knows it like you do<br />
    3. 3. How Can You Advocate for Your Care?<br />With your doctor<br />With your family<br />With your Personal Care Attendants (PCA)<br />
    4. 4. What is a PCA?<br />A Personal Care Assistant (PCA) is an individual, trained to help people with basic daily needs. <br />“A PCA may be able to help you if you have a physical, emotional or mental disability, a chronic illness or an injury.”<br />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. <br /><br />
    5. 5. What are the Day-to-Day Activities?<br />Physical Needs<br />Eating<br />Toileting<br />Grooming<br />Bathing<br />Dressing <br />Transferring<br />Positioning<br />Mobility<br />Other Complex Health-Related Activities <br />Practical Needs<br />Meal Planning/Preparation<br />Managing Finances<br />Grocery Shopping<br />Household Chores<br />Communication Assistance<br />Participating in Community Activities<br />Behavior Assistance<br /><br />
    6. 6. PCA Experience: Beginning to End<br />Assessment<br />Gaining a PCA<br />Balancing Your Life<br />Work<br />Transportation<br />Social Life<br />Relationship with PCA<br />Relationship with Partner<br />Letting Go<br />
    7. 7. Assessment<br />Public Health Nurse (PHN) comes to your home<br />PHN asks you about you and your disability(ies)<br />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. <br />
    8. 8. Gaining a PCA<br />If you have PCA traditional, your agency will pick your PCAs for you<br />You can let them know if you have any preferences<br />In Example: I prefer only women. <br />If you have PCA Choice, you will hire your own PCAs<br />Word of Mouth<br />Family/Friends<br />Place an Ad<br />
    9. 9. Balancing Your LifeWork<br />PCA services allows people with disabilities, the ability to work.<br /> According to DHS, ¼ of consumers of PCA services work. Only 22% of those workers use their PCA hours during work.<br />Ways your PCA can assist you at work: <br />Eating <br />Communicating<br />Toileting <br />Transporting to and fro<br />Winter Dressing<br />Other Health-Related<br />
    10. 10. Balancing Your LifeTransportation<br />On Metro Mobility and City Buses PCAs ride for Free, all of the time!<br />It is a vital connection to the community<br />Work/School<br />Doctor Appointments<br />Social Events<br />Church<br />Grocery Store<br />
    11. 11. Balancing Your LifeSocial Life<br />When planning social events, communicate ahead of time your strategy on how to still receive your cares and still have fun.<br />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.<br />Be mindful of Time and Parking.<br />
    12. 12. Balancing Your LifeRelationship with Your PCA<br />When you first meet with your PCA be very clear about your expectations and ask them what their expectations are as well.<br />i.e. If being on time is very important to you, make sure you let them know that and why<br />Be consistent with what your expectations are<br />Boundaries are very important!<br />PCAs are not your friends-This is their job and these are your needs<br />If something bothers you, let them know (gently) right a way!<br />Letting it go, will usually only make it worse<br />
    13. 13. Balancing Your LifeRelationship with Your Partner<br />Sexuality is an important, normal aspect of life.<br />Communicate with your PCA, ahead of time, that they are walking into your private life.<br />Spontaneous lovemaking and privacy if timed to PCA assistants schedules is sometimes lost.<br />Be mindful of sharing too much with PCA, because it blurs the lines of boundaries. <br />
    14. 14. Balancing Your LifeLetting Go<br />It is inevitable: At some point, you will have to let go of a PCA!<br />Try not to be too disappointed<br />Do not feel bad, just because you like your PCA as a person, does not mean you will work the best together.<br />Do not have unreasonable expectations of seeing your PCA after you let him/her go.<br />According to DHS, in 2003 47% of PCAs that quit, was due to finding another job that pays more.<br />
    15. 15. Questions??<br />