Looking back

Ward at a state institution circa 1960

When I was growing up in the 1950s and 1960s, there were no special education classes in our public schools.  People with disabilities were, for the most part, invisible.  I remember one student in my elementary who had had polio and walked with leg braces and crutches.  I remember one student in junior high who was blind and had a guide dog, but I don't know what special services he may have had.  I only remember seeing three people with developmental disabilities when I was growing up.  There were a brother and sister who could frequently be seen walking to Oakland Park to go fishing at the small lake.  (I later worked with the sister when she was transitioning out of a state school.)  The other person with developmental disabilities I was aware of was a girl who went through high school with us.  I suppose her parents must have insisted that she be in school; she went to  regular classes and the only thing she could do was write a few letters of her name on a piece of paper and turn it in.  I don't think I ever heard her speak.

Where were all those kids and adults with developmental disabilities?  I occasionally heard adults talking in hushed voices about someone who had a son or daughter "with the mind of a 2 year old."  But these people were well-hidden.  At that time, most parents were advised by their family doctors to place their delayed children in state institutions, and since there were almost no services in the community, most parents felt they had no choice but to follow that advice.

In 1974, fresh out of college with a degree in history and no marketable skills, in the midst of a recession, I got a job as an attendant at the Denton State School.  With my vast experience of having seen all of three people in my life with developmental delay, I jumped in with both feet.  I loved the kids in my charge, about 15 boys, ages 6-13.  I taught them self-help skills, sang songs to them, played with them.  I knew their little idiosyncrasies and what would make them laugh.  Back then, state institutions were very, well, institutional.  All the residents of the dorm slept in one large room with several rows of metal beds.  The day room was bare except for hard benches along the walls, with a TV on a bracket up high on one wall.  The bathroom was a large communal bathroom, with a row of toilets, a row of sinks, a raised tub, and a shower.  The kids whose parents still came to visit them wore clothes their parents provided.  The others wore clothes that were sewn by prisoners in state prisons; the outfits bore a striking resemblance to prison uniforms, in kids' sizes.  I sometimes bought regular clothes for some of those kids, and my dear mother sewed many lovely dresses for the girls on the neighboring dorm.  As much as the other staff and I tried, it was still an institution.

Because of this experience, I am deeply affected when I see folks with developmental disabilities out and about in our communities today.  When I see them out eating or shopping with their families, watch them play basketball or run track, see them pursuing their interests like art or dancing, see them working at the grocery store, my heart soars!  It is so moving to me, to think what a fundamental change has occurred in my lifetime.

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.