Respite Complexity


As unbelievable as it feels, Koan turned elven last week.  His school year is off to a great start as well. This year was a little different and tricky.  The school Koan now attends — this is the first year that a Barnum child has not been enrolled at Prairie Ridge since 2004 — has a different set of hours.  Koan’s school day up until now had run from 8:45 AM to 3:45 PM. The logistics of this were pretty simple for our family. We would have a respite worker come to our home around 6:30 AM and put Koan on the bus around 8:30 AM.  This person would allow us to get up and dressed while they took care of Koan. The first hour was true respite, paid for via Medicaid dollars. The second hour, we paid for since respite cannot cover child care expenses. Since we both left around 7:30 AM, we couldn’t claim this time.  Still, it worked really well. We always knew we had someone there to get him up, dressed, feed, and on the bus each day. And, even at $11 dollars per hour, it was pretty inexpensive.

But, things changed this year.  Koan now attends Prairie Creek. The school hours are different — Creek starts at 7:45 and ends the day at 2:45.  This creates a major scheduling dilemma. Both Jeri and I have to be out the door to do our jobs before 7:00 AM now.  My new job contributes a bit here, too. When I worked a Prairie, I could leave later because we live so close to the schools. Of course, with Koan getting home around 3:00 PM, that is really early.  So, we would absolutely need help at the end of the day. If I were still working at Prairie, we would have just flipped the script, and run the respite care for two hours in the afternoon. But, with our new situation, we really discovered we would need help both in the morning and afternoon.

There were lots of problems with this scenario.  The first was that we did not have enough respite hours funded via Medicaid to pay for three hours of care a day for ten months.  Back in August, we met with the amazingly helpful Gary Olsen and our new social worker from Johnson County (Linn County has dropped social work for people covered by Medicaid), Brenda.  This was an amazing meeting! Jeri and I shared the scope of the problem, and Gary and Brenda huddled until they had a solution for us. It was astonishing. The plan was to have a morning worker come in and do some physical/occupational work with Koan — which would include getting him dressed, feed, and on the bus — and by documenting it in this manner, we had access to additional dollars.  I really did mist up at the end of this meeting with gratitude for the creative, family-centered focus this team. It was so cool!

So, we had the plan.  We then needed to find people to work with Koan.  We tried something a little different this time around.  At the time we developed this plan, Koan was still attending the Arc’s summer day program.  I won’t go into how awesome that is here — but it is the really, really great. But, it is important to understand for this story that at this program about 25-30 different adults get to work with Koan.  Jeri and I met with Koan’s lead teacher for this experience and let her know we were looking for help in the fall for mornings (for an hour) and in the afternoon for two. By the end of the week, we had two young men who had expressed an interest in working with Koan.  We hired a young man named Connor who ended up getting a job at Prairie as a paraprofessional in a building that mirrors the hours Koan goes to school. It was a perfect fit.

The morning was a different story.  We could not find anyone willing to come for just one hour (6:30 AM-7:30) to work.  We looked. Gary looked. But, we struck out completely. So, for the first three weeks of school, Jeri and I would take turns waking Koan up, dressing him, and feeding him.  We would then rouse Tiber at about 6:45 AM — who would then watch Koan until his bus arrived at about 7:20 (putting Koan on the bus, of course). Tiber’s classes don’t start until 8:45.  This was kind of lousy arrangement — no one liked it. Koan had to get up earlier than he would like — as did Tiber. Jeri and I were perpetually feeling harried before we left the house from dealing with two unhappy boys.

In early September, Gary gave us a call saying that he had someone interested in our morning work!  He gave us Brenna’s number on a Wednesday evening, and she was working for us on Thursday morning. It was awesome!  This is just another great example of the incredible work done by the people at the Arc along with our friends in Johnson County — who again elected to hang on to their Medicaid caseload despite the mess that is Medicaid privatization in Iowa.

Oh, and Koan is having a blast at Prairie Creek, too.  Earlier this month, I dropped him off there after a check-up.  We were literally mobbed by teachers, paras, and students within seconds of walking through the front door — hugs and high-fives all over the place.  It’s hard not to feel great about that! I’m a little worried that one of his new teachers might get a little too attached. She sends wonderful pictures and texts about him on many days.  But, I’m kind of worried that one of these days, Connor is going to go to the bus after school — and there’ll be just a note — something like, “ We’ll send Koan to you for the weekend to visit… MST.”  Of course, I’m kidding. It is seriously great the way that Koan is being loved in his new school. It’s what all parents would want.

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