Approaching a Caregiver - PowerPoint Presentation

Approachinga Caregiver Speaker: Lainey Morrow PASSE Care Coordinator Training Series

About This Course Agenda Introduction Insights to parent and caregiver needs Insights to the community you serveBest practices for how to approach and communicate with a caregiverPractice ScenariosQuestion & Answer session 2

About Our Speaker: Lainey Morrow Experience Parent and Caregiver Advocate Communications SpecialistWhen her daughter was born with Down syndrome in 2013, Lainey’s life changed in more ways than one; she became not only a mother and caregiver but an advocate. Lainey and her husband Ron quickly learned all they could about Medicaid, services their daughter would need, and how to support their child. Soon, Lainey began to encounter others who also had questions about Medicaid. In 2016, she started “Medicaid Saves Lives” (MSL), a Medicaid information and advocacy group. In August of 2018, Lainey left MSL and began serving at the Arkansas Department of Human Services as the Medicaid Public Information Specialist, helping to shape communications about Medicaid programs and services. She’s remains an active advocate, influencing legislation that will bring increased rights, satisfaction, and security for people with special needs in Arkansas. She also serves on the boards of the Down Syndrome Advancement Coalition and GiGi’s Playhouse Little Rock. 3

Experience Parent and Caregiver Lainey knows what it is like to be a parent and caregiver of a high needs individual. 4

IF YOU HAD TO PICK ONE, WHICH WOULD YOU GIVE UP FOR LIFE? AIR CONDITIONING YOUR FAVORITE DESSERT YOUR FAVORITE DRINK YOUR FAVORITE SHOW Activity 5

WHICH BUTTON WOULD YOU PRESS? School loans forgiven 1 year of paid vacation from work/life 10 years of free gas Lifetime supply of coffee Permanent good bill of health 100 thousand dollars 1 true best friend nearby for life The perfect job for you (paid) 6

Insights into Parents’ & Caregivers’ Needs What is it like to be a parent or caregiver of one of your clients? Being a caregiver is often a 24/7 job that lasts for the lifetime of the individual. Caregivers you serve may be experiencing: Emotional stressPhysical stressFinancial stressIsolation Hopelessness, depression, and/or anxiety Loss of dreams and goals Loss of jobs Different priorities than a typical caregiver or parent An ever-changing situation 7

Insights into Parents’ & Caregivers’ Needs Tips about parents & caregivers: If you are not a parent or caregiver of a person with a higher level of need, avoid phrases like, “I totally understand.” All situations are different. Even caregivers in the community should avoid phrases like this. INSTEAD: Say “I can only imagine how hard that must be.”If you are also a parent or caregiver of a person with a higher level of need, avoid swapping stories until you have gotten to know that client better. INSTEAD: Give the relationship time to grow. When you are told of a person’s diagnosis, try not to say, “I’m sorry.” INSTEAD: Say, “tell me more about that/you.” Some parents and caregivers may find it hard to accept that they need help. TIP: Take some time to find out more about what the person wants and needs from you. 8

Experience Advocate Lainey has been an active advocate for the PASSE community, and she created the group Medicaid Saves Lives. 9

Insights into this community Many of your clients and their caregivers are becoming more active and are advocating for themselves. Some of your clients and their caregivers are collaborating together and with their providers. They talk to each other. TIP : When you speak to a client, anything you say can be repeated.Not every client is the same, and each client has different expectations of you. Since the clients are in contact, they may have a certain mindset about you and what your role is. Some clients may want heavy involvement from you, while others may not want much at all. TIP: It might help to ask clients what their expectations of you are at each first meeting, so you can clear up any misconceptions and work with them instead of clashing. Most clients expect that: your function is to serve them and advocate for them you know information about their diagnosis you remember what they already have told you you will help them and anticipate their needs 10

Experience Medicaid Information Specialist, DHS Gathering her experience as a caregiver and advocate, Lainey now helps to shape communications and provide information for Medicaid beneficiaries at the Arkansas Department of Human Services. Annual DHS Halloween Party for school kids Preparing for a PASSE Facebook Live Preparing for a PASSE Town hall Promoting The Blue Umbrella Visiting with clients 11

Best practices to approach and communicate with a caregiver or parent Put yourself in the client’s place. Think about how would you feel in the client’s position. Use plain, clear language that can be easily understood.What questions would you have? In the beginning of a meeting, tell the client the purpose of the meeting. Take time to listen to your client. Remember what the client says to you. TIP : Take good notes. Then review the facts about your client or notes from your last contact before you talk with the client. Follow through on what you say you’ll do in a timely manner. Give the client a timeline, so that he can have proper expectations. If you need a client to do something, tell the client: What the client needs to do What the deadline is Consequences of failing to act What does the client need before he takes the action (ex. which documents) How to take the action (ex. how to renew or fill out a form) Where the client can get more information or help Length of time the process usually takes 12

Best practices to approach and communicate with a caregiver or parent Communicate in advance when a big event or change is coming: Before a client hears it from someone or somewhere else In advance of a client losing a serviceWhen an action is requiredex. he or she needs to submit information, report something When someone is approved/denied for a service Approved - what does the client need to know about available services? Denied - what options does the client have? In advance of when you plan to make a change (proactive communication) Before changing a rule or policy that could affect clients Changing who provides a service to the client Changing how a client will qualify for a service When you want to educate clients on a specific topic Services offered, importance of certain services, contact us information, etc. When you see trending issues (reactive communication) Multiple people complaining/sharing negative interactions on social media Multiple people complaining to elected officials/providers Multiple people who have similar negative experiences In advance of when you are taking an action clients need to know about Ending a program, eliminating a provider 13

Best practices to approach and communicate with a caregiver or parent Be proactive to help your client. Try to help your client with needs ahead of time – like yearly appointments or referrals – before it’s too late to schedule them. Anticipate client and caregiver questions.Make sure your client has updated information.Offer clients more information or resources for things you know are important to them (like free events, latest studies, etc.). Don’t assume the client understood you. Ask if he or she has questions. Know common rules of your PASSE that affect clients. TIP : keep a PDF copy of the latest handbook or PASSE manual, so you can search by key words if you don’t know the answer to a question. It’s okay to say you don’t know, but don’t leave it there. INSTEAD : Say, “I don’t know, but I’ll call you on (day) at (time) with the answer.” Engage the client in discussion instead of telling him what is happening. 14

HOW WOULD YOU RESPOND? Practice Scenario 1 CLIENT: We have had the same doctor for the past 19 years, and now we can’t see him after September 1 because of the PASSE. He has been my daughter’s doctor her entire life. He knows her better than anyone. She won’t talk to anyone else. I am so mad! Why did we have to switch to this system? We were just fine before all of this. Maybe we should just go to the ER when she’s sick.15

WHAT IS A HELPFUL RESPONSE? Practice Scenario 1 We would love to talk to your doctor and tell him about the benefits of joining our PASSE network. What is the doctor’s name? (Depending on your PASSE’s out-of-network rules) You can still see that doctor even if he’s out of our network.(If your PASSE has already tried to contract with the physician)We talked with your doctor about the benefits of joining our PASSE network, but unfortunately, he chose not to join. These are the other doctors available for you to see. Be prepared:Do you know your PASSE’s in- and out-of-network rules?Do you know who to ask about contracts in work? Do you know how to help a client find another provider? 16

HOW WOULD YOU RESPOND? Practice Scenario 2 CLIENT: I am so exhausted. Tommy needs help with all of his basic needs 24 hours per day. I can’t lift him anymore. I barely get any sleep at night, and I don’t have time to go to the doctor about my own needs. Isn’t there someone who can help me?17

WHAT IS A HELPFUL RESPONSE? Practice Scenario 2 We cover {list services} that could help you. Let me find out more about it, and I will call you on {date/time} to connect you with those services. Be prepared: Do you know what services your PASSE covers that could help your client in this situation?respiteadaptive equipmentsupported livingenvironment modifications Do you know how to help your client get these services? 18

HOW WOULD YOU RESPOND? Practice Scenario 3 CLIENT: My brother Ken lost his job two months ago, so he’s been staying with us. His emotions seem to be all over the place lately – up and down, up and down. I really thought Ken was going to hit my son yesterday because he was playing too loudly. Then I noticed a stash of pills when I was picking up Ken’s laundry this morning. I know his doctor said he needs to take his medicine every day, or he’ll be on the streets again. Something isn’t right. He’s my brother, and I know he loves us. I want to help Ken, but I’m afraid for the safety of my kids. What are we going to do?19

WHAT IS A HELPFUL RESPONSE? Practice Scenario 3 We cover {list services} that could help you. Let me find out more about it, and I will call you on {date/time} to connect you with those services. Be prepared: Do you know what services or providers your client is getting or has gotten in the past?Do you know what services or providers your PASSE covers that could help your client in this situation?crisis interventionoutpatient behavioral health counseling Do you know how to connect your client to help in a possible crisis in the future? Mobile crisis unit 24/7 helpline 20

HOW WOULD YOU RESPOND? Practice Scenario 4 CLIENT: My son had surgery two months ago, and I just got a bill for $2,500. I thought I wasn’t supposed to get bills? Wasn’t this covered? I can’t pay that much money! What am I going to do? 21

WHAT IS A HELPFUL RESPONSE? Practice Scenario 4 My records show that you were covered for this surgery, so you should not have gotten a bill. I will contact our billing department and ask them about why you got a bill for that surgery. Then I will text you later today about {time} to let you know what I found out. Be prepared: Do you know what services your client is getting? Have you guided your client to in-network providers and services?Do you know what your PASSE’s rules are about co-pays and bills sent to clients from providers?Do you know your PASSE’s process for handling situations like this one? 22

Resources

Questions? Contact: lainey.morrow@dhs.arkansas.gov