If you are in a Medicaid waiver or a Home and Community Based Care program, the state will provide you with a caregiver (also called a “home aide” or “home attendant). But you have a big choice to make!
🎀 If you want, you can select an agency and that agency will send a caregiver to your house.
🎀 Or if you want, you can sign up for self-directed care. With self-directed care, you get to choose and hire your own caregiver, and the state pays the salary.
Big decision! Here’s some pros and cons each way:
🎀 Advantage: Less paperwork
🎀 Advantage: Less bureaucratic confusions and complications
🎀 Disadvantage: In some states you will get less caregiver hours if you go through an agency. You may only get half the hours.
🎀 Disadvantage: The agency does not guarantee to cover all your shifts. Sometimes they can’t find someone to work and so you won’t get a caregiver until they find one, or you may have days when no caregiver arrives.
🎀 Disadvantage: Agency may have rules that do not allow the caregiver to use their car or to drive you places.
🎀 Disadvantage: Some agencies will not allow the caregiver to handle your money. This means they cannot shop unless you are with them.
🎀 Disadvantage: This is a bad combination. If they cannot drive you places and they cannot shop without you there, shopping may be impossible.
🎀 Disadvantage: If you have special needs, such as not wearing perfume, the agency may not make these arrangements and the caregiver may not agree.
🎀 Disadvantage: You can’t control who they send. You can’t pick someone you like.
🎀 Some agencies only pay their workers $7-$8 per hour and it is hard to find anyone who is good or willing to keep a job at this pay rate
Self Directed Care
🎀 Advantage: Pick your own attendant. Choose whoever you want. (exception: In most states it cannot be your spouse).
🎀 Advantage: You can find someone you really like and feel comfortable with.
🎀 Advantage: You can find someone who meets your needs. For example, if you need someone who owns a car, you can be sure to only hire someone who owns a car. If you want someone who can shop for you, you can be sure to only hire someone that you trust to give your grocery money to.
🎀 Advantage: In some states, your caregiver will get a higher salary. In some states, you can help decide the salary.
🎀 Advantage/Disadvantage: You supervise the person and you are the “boss.” Maybe you like this, maybe you don’t.
🎀 Advantage: If you choose your own caregiver, you have the option to arrange a live-in caregiver if you want to. There are a lot of different advantages to this. For example, your caregiver may not have to pay taxes, or may be able to get free rent, or you may get extra help with your utility bills: How to Get Extra Help if You Have a Live-In Caregiver
🎀 Advantage: As soon as you are approved, you can begin getting assistance. You do not have to wait for an agency to place someone. For example, if the date of your Medicaid eligibility is in January, but the paperwork is not all processed and in place til March, you may be able to start tracking caregiver hours in January, and then submit three months of timesheets at once. This may vary by state.
🎀 Disadvantage: Takes time and energy to screen and select attendants
🎀 Disadvantage: More paperwork and timesheets to manage
🎀 Disadvantage: You will need to take responsibility for the paperwork, or find a friend or family member who is willing to take on this role. Most of the paperwork is in the first few months. Once you figure out the system, it gets a lot easier. You will have a caseworker who can answer questions and help guide you through the process.
🎀 Disadvantage: It can be work to find a caregiver. If your caregiver quits or does not show up for work, you can be left without help.
🎀 Disadvantage: The caregiver you chose must pass a background check for felonies or abuse crimes. (Other types of convictions may not be a problem).
🎀 Disadvantage: It takes time to complete the paperwork and do the screening to hire a new caregiver. The first paycheck may not come for several weeks or longer.
🎀 Disadvantage: It is common for people to run into problems with timesheets and payment, especially at the beginning. You may have to work directly with the payroll company to work everything out and resolve problems so your caregivers get paid. This can be a headache.
The Easiest and Best Way
The easiest and best way to find a home aide is to chose self-directed care and ask someone you know already and like already.
🎀 Don’t do this: Don’t say to your friend, “I’m hiring a home aide. Are you interested in the job?” Your friend will say, “no.”
🎀 Instead try this: Make a personal request; Tell the person how much you like them; Tell the person why you think they would be a great home aide; Tell the person why you feel more comfortable asking them or working with them than other people; Tell the person how much it would help you; Tell them any benefits you can offer (for example, if you can be very flexible with schedule, make disability accommodations, allow breaks, etc); Ask if they would be willing to try it for two weeks on a trial basis to see if they like it.
You will be surprised…. there is a good chance they will say yes!
🎀 There are a bunch of other little things it might help you to know if you are in this program: How to Get Extra Help if You Are in a Medicaid Waiver Program
🎀 If you decide to select your own caregiver: How to Find Wonderful Housemates & Caregivers
What Works For You?
“I use an agency, but I have family friends that I wanted to be my attendants. We arranged for my family friends to get hired by that agency so they could provide my care. Now my family is much less stressed and that makes me feel less like a burden. I feel like I have much more support with getting all the services they offer.” – Teri
“I hired my brother. He was already taking care of me every day anyway! But it was not a good situation. He was only taking care of me short-term because it was an emergency. He didn’t know what to do because he needed to get a job but then there would be no one to help me. After I got in a waiver program, he was able to be paid to be my attendant. I got to keep the caregiver who I like and trust and he got the job of helping me, which is a job he likes.” – Jasmine
“It is not really a choice for me. Not everyone can manage their caregiver’s hours and back-up workers in case their worker is ill. I would not be able to hire my own workers. I have tried before and had bad experiences with the workers I chose. It took a while, but the agencies I have now are able to work with me. I am spoiled by the agency. I would have to settle for whomever I hired if I went with an independent worker.” – SXR
“I used an agency, but they will not allow the aide to drive me anywhere. She can be in my car if I drive. How does this help me? She also is not allowed to handle my money. So I have to go to the store with her. Basically, I can drive her to the store, and then sit while she shops, then I pay for the food, and then I drive her home. If I could do all that I would not need an aide!!” – OM
“My payroll agency takes a really long time to run background checks and approve the new aides I hire. Then my caseworker gave me a tip: She told me to hire my mom! I hired my mom and got her signed up with the agency. She usually takes care of my for free, but sometimes when one of my aides leave, my mom starts to put in timesheets to get paid for her hours. With the extra money she gets, she hires some more aides for me and pays them out of her pocket, until they can get all their background checks complete and start being paid by the state. My caseworker told me that many of her clients do this. It’s a great tip and has helped us so much!” – BP
“I invited my friend over and told him I had a question, but I wanted to think about it and not answer right then. I told him I was looking for a home aide, and I felt like he would be the perfect person, because he is so kind and wonderful, and he is one of the few people on the planet I completely trust and I would never be able to find anyone else as great as him. I told him that I knew the pay was low, and I knew there were more important jobs he could be doing, but it would mean so much to me if he would think about it, and consider trying it for a few weeks. He thought about it and said, “I would never take this kind of job for anyone else, but I will try it for you.” After two weeks, he decided to stay! This is how I have gotten all of my aides and it has worked out great every time.” – MP
“One negative about Home Services is conflict resolution. If you hire your own attendants, there is no third party to help resolve conflicts at home like there might be through an agency. The reality is the outcome of a resolution may consistently fall more into the favor of the worker instead of the person with disabilities.” -SN