05/16/2008 06:28 pm ET | Updated Nov 17, 2011

Think You Need a Raise? Caregivers for the Disabled Need One More Than You Do

Every Saturday, I pick up my brother-in-law Vincent at his group home in the Chicago southland. We go out for dinner and a movie or whatever with family and sometimes close friends. When I drop him back home, I have a few minutes of conversation with Rayshawn, the weekend overnight staff guy. Rayshawn is a young, strong guy built like a fullback for the Bears. Since the neighborhood is a bit rough, everyone feels a little safer with him there. Vincent is crazy about Rayshawn, which makes life easier on many levels. Rayshawn helps Vincent arrange his closet. He monitors Vincent's nocturnal foraging in the kitchen. He shaves Vincent. Lately, he has been grooming Vincent's new goatee. I don't know about Rayshawn's pay. I fear it isn't much.

Most of these workers are paid through Medicaid, a program that bleeds red ink in just about every state. Our Governor's proposed FY2009 budget again includes no cost of living adjustment for these workers. Nothing new or surprising there. Politicians are rewarded by powerful constituencies for good provided. They are rewarded by voters for the tip of the policy iceberg that people readily see. In health care, this includes expanded prescription drug coverage for the elderly, more SCHIP for kids, and so on. Equally important nuts-and-bolts stuff -- Medicaid reimbursement rates, policies towards worker pay -- are harder for voters to see. You can guess what happens.

Direct care workers are not a powerful constituency, and they are pretty invisible to most voters. Last Saturday's Chicago Tribune profiled one of these workers, Sharon Manuel.

Ms. Manuel works in a home caring for five intellectually disabled women, none of whom has learned to talk. She bathes and feeds them, and she monitors their medications. In return for this work, she receives $9.85 per hour -- not a lot in greater Chicago. She juggles two jobs to support her three kids, one of whom has an unspecified disability.

Every day, my family and countless others trust direct care staff to care for our loved ones. Yet we pay them less than we pay many of the college students brewing skinny lattes at Starbucks. Meager staff pay and benefits are the shameful back story of the generally positive effort to move intellectually-disabled people out of state institutions into the community. Starting hourly wages for direct care workers are typically a dollar or two above minimum wage.

Not surprisingly, low morale and turnover are huge problems. Families hope that the job means more than a paycheck, especially since we can't always monitor what they do. We hope that direct care workers treat our loved one with diligence, dignity, and skill he deserves. Many do. Given human nature, not every care worker earns the paycheck she doesn't get to receive. I've met too many people who clock in, take the cruddy paycheck, and don't do much else. If I got $9.85 per hour, I wouldn't be the Energizer Bunny, either.

Here in Illinois, 28,000 direct care workers are trying to do better. AFSME is fighting for a $0.50/hr raise and annual cost-of-living adjustments. This pay raise would cost Illinois an estimated $22.5 million next year.

There is no shortage of gravy in our $2.1 national trillion healthcare economy. To take an example not quite at random, we've just shoveled hundreds of billions of dollars into Medicare Part D. Much of this is a poorly-targeted subsidy to middle-class elders who are not in particular need. Some of the rest is a giveaway to pharmaceutical companies who get higher prices than we need to pay.

Meanwhile, the people who do some of the hardest work are given the most meager rewards. Our state government faces deep budget problems. So it is tempting to withhold a needed cost-of-living raise. This isn't right. We trust direct care workers to care for our loved ones. We should earn their trust by paying a living wage.