Opinion | Support Michigan direct care workers, folks like me who need them

In the U.P., mom Virginia Killough has struggled to find care for her son. Here's her story.

My son, Al, is 33 years old. He was born with autism and needs extra support in his daily life. He needs round-the-clock care, so we rely on help from Direct Care Workers (DCWs). These generous individuals come to his home to care for Al, offering him everything he needs to live as independently and autonomously as possible.

Unfortunately, finding DCWs is far from easy as they are underpaid and overworked. My family is from Marquette, but because of the lack of care in our region, there has been lots of anxiety and disruption in both our lives. Sadly, due to the low rate of pay for Michigan DCWs, it has been impossible for us to find him the care he needs in our region. He has since moved to Midland, which is the only place he’s been able to find reliable people to help him. He lives by himself in a house, far from me and the rest of his family.

Virginia Killough is a retired family physician and mother of three in Marquette.

The lack of care available resulted in him winding up in the hospital. He was hospitalized in Marquette last year and was unable to go home for 110 days since we couldn't locate any DCWs to assist us at home. His health was deteriorating badly by the time we found the help we needed to allow him to return home.

After that, Al was uprooted once more and transported to a hospital downstate, then was transferred yet again.  He was taken off his prescriptions without me being aware of it, and as a result, he had a violent seizure brought on by medicine withdrawals.

To be clear, if a DCW had been available, my son would never have been hospitalized at all. The issues I’m describing in this op-ed have stemmed entirely from the state’s failure to develop the policies and supports necessary to ensure an adequate supply of DCWs. As a result, people like my son are forced into situations that are completely unendurable.

Our state’s behavioral health system has failed him numerous times. It frustrates me that he cannot receive the proper care he needs and deserves. It is hard to find enough staff to help care for him. We want to fight for a change in the way DCWs in Michigan are paid, supported, and respected.

As the state budget process begins moving forward later this month, it is essential that adequate DCW compensation be a top priority for state policy leaders. Last year’s increase of just $.85 per hour was woefully insufficient. Today’s DCWs earn on average a starting wage of about $16 per hour. This level of compensation is just too low to keep DCWs on the job, leading to a 42 percent turnover rate in the field. It is essential for Michigan to ensure a $20/hour starting wage—which, frankly, still wouldn’t be enough in my region of the state. But it’s a start.

I know my son is not the only one dealing with this and hope my story can help start to fix this problem. I have gone through many different DCWs who sadly have no choice but to leave the profession—after all, they need to make ends meet. Unfortunately, that leaves my family no choice but to move him a long distance. It makes me very scared for my son’s future.

There are many changes needed to properly support DCWs so they can stay on the job. From changing the way they are funded and paid to simplifying the growing number of administrative tasks they have to perform, there are many ways to make their professional lives better. Michigan advocates and experts have been recommending important policy revisions for years now, but so far action has been limited and there’s little to no accountability. 

Those changes are important. Why? Because of Al and tens of thousands of other people with the same level of need. Michigan’s lack of DCWs has left Al and so many others with no support and our lives are greatly affected. 

I want there to be a change so my son can live as normal a life as possible. I want to be able to let go of my fear for Al and trust that he will be well cared for. 

It’s time to support families like mine and pay Michigan’s Direct Care Workers what they deserve.