Example

Jack’s Story

Jack is 56 years old and has cerebral palsy. He has been living alone for a number of years and recently has been having a difficult time taking care of himself and his home. Tasks like cooking, bathing, and getting dressed in the morning take far more energy than they used to.

Jack has become depressed about the situation. He is very independent and has always prided himself on his ability to take care of his affairs on his own. The last thing he wants to do is move into an assisted care facility, but he doesn’t know what else he can do.

Jack’s friend suggests that he call up his local Aging and Disability Resource Connection (ADRC) site to see if they have any ideas for him. Jack calls the ADRC and briefly explains his situation to a counselor, Darlene.

“It sounds like you could use Personal Assistance Services (PAS),” Darlene tells him. “Personal Assistance Services include help with things like cooking, cleaning, and getting in and out of bed. Many people with disabilities have a Personal Care Assistant (PCA) come help them for a few hours or more each day, so that they can keep living in their homes.”

“Yes, that sounds like it would be very helpful,” Jack agrees.

Jack has Medicaid coverage, but Darlene explains that Medicaid will only pay for PAS if he is in a Medicaid waiver program, which he must apply for separately. Not all people with disabilities qualify for waiver programs, she says—they are specifically for people who require a level of care normally provided at a nursing home or hospital and need extra services to help them live at home. Based on what Jack has told her, Darlene says, she thinks he will likely qualify.

Getting Waiver Services

Darlene helps Jack apply for the Independent Care Waiver Program (ICWP), which is for people with severe physical disabilities. There is a waiting list for the ICWP in his area, which means Jack will have to wait a bit before he is approved and can start getting services. Once approved, he finds out that Medicaid will pay for him to get 20 hours of Personal Assistance Services a week. He can either let his case manager find and hire his Personal Care Assistant (PCA) through an agency, or he can find his own PCA and train them himself.

“Either way, we’ll handle the PCA’s paychecks and any taxes,” his case manager tells him. “The question is: Do you want to be responsible for hiring, supervising, and firing (if necessary) your PCA? Or do you want those handled for you through an agency?”

Jack decides that he would prefer to hire his own assistant, either someone he knows or someone who has been recommended by a friend. After asking around, he decides to hire Wendy, a retired neighbor, to provide the services he needs. Wendy comes by every day to help Jack in and out of bed. She prepares meals for him, cleans, and does some of his laundry. She also offers personal care services like dressing, grooming, and bathing.

It turns out to be a great arrangement. Wendy enjoys the part-time work and Jack is extremely grateful for the help. His depression has lifted, he has more energy than he used to, and he is thrilled to be able to continue living in his own home.