Buses, trains, and automobiles

What a week!  My transmission has been acting up, so I finally took it to the shop, hoping against hope that maybe it just needed some transmission fluid.  (Fat chance!)  I was told it needed a new transmission, to the tune of $4000.  This was especially irritating since I just bought the car, a 2003 Honda Pilot, last summer.  I weighed the pros and cons of fixing it, a decision I always hate.  Should I pour a great deal of money into it, taking the chance that something else will go wrong, and that it will become a financial black hole?  Or should I just throw in the towel and get rid of it?  Well, the Pilot made that decision a lot easier two days later, when the oil pressure light came on, and then the next morning it wouldn't start at all.  Bye-bye, Pilot!  Fortunately, I left my good ol' Suzuki Sidekick in Texas with Jesse, and can use it as long as it keeps running.  So I'm having it shipped up here.

So I reserved a rental car online yesterday and they picked me up to go get the car.  But when I got there, they informed me that they couldn't take my debit card, only a credit card.  It was then that I realized that my new credit card had never arrived in the midst of the move last fall.  So it looked like we would be car-less until the Sidekick arrives.

So the plan for today was for Gabriel, Tevis, and me to go to the grocery store on the bus.  Last night I was all gung-ho.  After all, someday the guys will have to depend on public transportation, so we should start using it more often, so they can learn how to use it and get comfortable using it.

But this morning, the thought of lugging a very large amount of groceries back on the bus was daunting, plus we also needed to go get prescriptions at another store.  So I discovered that I could rent a car through Hotwire using a debit card after all, and at a very good rate, if we went to the airport to pick it up.  So we took off on the bus, then transferred to the rail system, which goes right to the airport.  After standing in line for an hour (seems like they could have had more employees scheduled on a holiday weekend), we got the car.  Then it was on to Trader Joe's and the drug store.

I was kind of disappointed in myself, that I am so dependent on a car that I couldn't do without one more than a day.  What kind of message did that send to the boys?  At least we did use the public transportation system to get to the airport.  And I resolved today that I'll do my best to plan an errand or outing with the guys every week using the bus and/or train.  As I mentioned casually to them today,  "Someday I won't be around to drive you everywhere, so this is something you need to know."

"Shared home, shared life"

Continuing to look for innovative programs for adults with developmental disabilities, I found the companion model developed by Resources for Human Development (RHD).  RHD is a values driven non-profit that provides services to people with developmental disabilities, the homeless, and persons with mental illness.  In the St. Louis area, RHD-MO provides residential programs and day programs for persons with developmental disabilities.

Their residential program utilizes the companion model, in which the disabled person shares his/her home with a caregiver.  Rather than having an ever-changing staff of shift workers, the person with a disability has a roommate who shares his home and life.



I can easily imagine both Marcus and Tevis benefitting from this arrangement.  Marcus is a very private person who maintains his own routine.  I have always thought he would hate a group home, with its lack of privacy and independence, and the way that clients are expected to participate in group activities not of their own choosing.  But I can see him enjoying the company of a caregiver/roommate who would provide conversation, play video games with him, go on outings with him.  Tevis would also like this type of "care."  He's been in a group home, and now has blossomed living back at home.  He likes to pursue his own interests, especially surfing the net on my laptop.  He loves being able to fix his own breakfast and lunch, go outside whenever he wants, having more real choices.  I'm sure having a roommate/caregiver would fit nicely into his idea of what kind of life he wants.

Down home on the ranch

Since my boys are now all adults with developmental or mental health disabilities, I am of course concerned about where they will wind up when I'm gone.  I've done quite a bit of research online, looking for high quality, innovative programs for adults.  Tevis was in a group home for many years, because of his need for constant supervision and because of his explosive behavior, so I've seen the "average" group home, and I was not impressed.  The first group home was an ICFMR facility with 6 residents; the second was a Medicaid waiver home with 3-4 residents.  The second was of better quality, with better administration, but both were plagued above all by the quality of direct care staff.  Given the low pay and the sometimes stressful work, turnover was a constant problem and the administrators obviously had to take what they could get.

I have long admired the L'Arche movement, a worldwide movement founded by Jean Vanier in France in 1964. He had a vision of homes where people with and without disabilities lived together in an intentional community, sharing their faith and their daily lives.  Similarly, the Camphill movement, based on the writings of Rudolf Steiner, has established communities where people with developmental disabilities live and work with non-disabled "coworkers," many in rural settings where they also promote sustainable agriculture.  Unfortunately many of these programs charge a hefty tuition or residential fee, putting them out of the reach of most persons with disabilities and their families.

A few residential programs which have been influenced by the ideas of Vanier and Steiner do accept public funding (Medicaid), however.  One of these is Down Home Ranch in Elgin, Texas.  Founded by Jerry and Judy Horton in the early 1990s, it is a working ranch where 20 ranchers with Down syndrome and other developmental disabilities and live-in resident assistants live and work together.  Along with caring for livestock, the ranchers cultivate hanging baskets, Easter lilies, and poinsettias in their five greenhouses to sell to the public.  During the summer, 500 campers enjoy a week of Ranch Camp at the ranch.  It sounds like a great residential option, and I'm hoping to check it out, perhaps sending Tevis down there for a camp session this summer.

The cloud of the future

Today Gabriel had an appointment with the nurse practitioner to recheck his diabetes medication and glucose levels.  The clinic is in the same location as his mental health provider, and, as we sat in the waiting room, his case manager came in.  She came over to Gabriel and began asking him if he brought his record of blood sugar levels, did he bring a list of his medications, etc.  She had to take care of another matter, but she told him she would be back.

I knew that she planned on going back with us when the nurse called him.  Unexpectedly, I felt a wave of resentment rising within me, and it took me by surprise.  After all, isn't this what we moved up here for:  to obtain the support services that Gabriel needs?  Why did I have this almost visceral response?  As I thought about it, a dark cloud seemed to skim across my mind.  In those few dark moments, I saw a future without me, Gabriel on his own against the world and his schizophrenia.  That vision was so vivid, so distressing, that I had an unsettled feeling during the rest of the appointment.

This is the worry, the sometimes anguished distress, that haunts parents of children with developmental disabilities or severe mental illness...what will happen to my son/daughter when I'm gone?  We search for programs and support services, we consider residential options, we draw up wills and set up trusts.  But, especially if our family is not a close-knit one, we fear that eventually our adult child will be "cared for" only by people who are paid to be there.