Pieces of a Puzzle

Since returning from the Canada road trip, my days have been filled with trying to get Justin set up for services so that he can begin living on campus and attending college.  Tonight, we met with the fiscal agent who will be responsible for paying Justin’s caregivers.  Tomorrow, we have a meeting with SSI.  Wednesday, we meet with his managed care coordinator.


We have less than three weeks to get everything in place. We’ve been on a time crunch because Justin didn’t qualify for a lot of this stuff until his 18th birthday in mid-May.

Some of the government employees and non-profits involved truly want to help and are able to do so.  Some of the people involved truly want to help and haven’t been able to help much, due to limitations in the system.  Other people have attempted to obstruct, delay, and prevent us from getting things done.

I don’t have any problem with government employees trying to save taxpayers’ money. We pay a lot of taxes ourselves. But when the government bean counters are penny-wise and pound foolish or just so full of themselves that they fail to do their job, my adrenaline goes into overdrive. Everyone wants to root out fraud, but this is not that kind of situation.  The government safety net was designed with people like Justin in mind.

In the last twenty years, the emphasis has been to keep severely disabled adults in the community—partly because it’s a more fulfilling way to live, but partly because it’s a lot cheaper than institutional care. Having said that, people who try to live independently have been getting squeezed. The pay for personal caregivers has remained stagnant, resulting in a labor shortage that puts severely disabled people’s lives at risk. One personal care agency has primarily serviced Justin’s college for years. However, that private agency refused to provide care for Justin and other freshman disabled students for the fall semester because they don’t have sufficient staff to meet the needs of new disabled students.  They point blank told us, “Sorry, we can’t help you.  You can try again for the spring semester, but we can’t promise anything.”

Of course, there’s a reason why there isn’t enough staff. The pay is about $9/hour, irregular hours, and difficult working conditions. Justin is alloted forty-some hours per week, and the majority of that time is early in the morning and late at night.  Most people would rather work at Taco Bell for four-hour shifts than work two-hour shifts emptying urine bags and transferring patients from bed to toilet chairs to showers. As a result, we’re scrambling to find caregivers outside the agency setting. The good news is that care workers can make more than $9/hour by removing the agency’s profit from the equation. The bad news is that it puts the burden for finding caregivers on the severely disabled person. Justin will have to learn to hire, fire, train, and time keep.

Most people who attend college for the first time worry about papers, exams, grades, and how not to get caught drinking alcohol. Justin has to worry about whether someone will be there to get him up in the morning, assist with getting meals during the middle of the day, and getting him into bed at night, plus all of the normal student stuff.  If no one shows up and back-up isn’t available, he has to call 911– if he can reach his phone. He cannot move out of a laying position without assistance. Not even to sit up.  He can’t transfer out of his wheelchair without a mechanical lift or a big strong dude.  How it’s all going to play out, nobody knows.

We all know that life isn’t fair. It’s less fair for some than others. On the other hand, there is reason for hope. Twenty years ago, most of the boys with Justin’s diagnosis died before reaching adulthood. No one went to college.  Now, we know a number of young men who finished college and went on to find jobs with the skills gained in college.

Justin desperately wants to go to college and to live in the dorms with the help of personal caregivers. There are no guarantees even if we can get all of the care set up. Another UW-Whitewater student with Justin’s diagnosis, and who Justin knew from state Muscular Dystrophy Association activities, died earlier this year at age 20. It’s important for all of us to live every day to the fullest and to appreciate every day as if it might be the last.