ADVOCATING FOR YOUR CARE

“Learning As We Go-Go-Go”2011 Self-Advocacy Conference

Darrell Paulsen and Nikki Villavicencio

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

How Can You Advocate for Your Care?

•With your doctor

•With your family

•With your Personal Care Attendants (PCA)

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

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

PCA Experience: Beginning to End

1. Assessment

2. Gaining a PCA

3. Balancing Your Life1. Work

2. Transportation

3. Social Life

4. Relationship with PCA

5. Relationship with Partner

4. Letting Go

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.

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

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

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

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.

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

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.

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.

Questions??