The plot thickens

So.  As I sat in my office pondering what “three new rules” might mean and why we had not heard anything about them as stakeholders, there was a tap on my door.

It was my friend the surveyor.

“Mrs. Horton, I just wanted to make sure you understood the implications of what I told you.”

I assured the surveyor I did.  We said our goodbyes, and I called Carol Smith, head of the Private Providers Association of Texas and asked her if she'd received any communications on this matter from DADs.  She had not.  We both started looking through our emails.

We didn't find anything so Carol said she would make some calls and get back to me.

We had success.  The proposed rules could have been drafted specifically to target Down Home Ranch.  They specified that individuals intellectual disabilities (IDs) who had HCS funding could not 1) live next door to another person with IDs; 2)  could not live next door to staff who provided them with care or educational and other services; 3) must live in what was considered a “typical” community.

That pretty much left us out of the running.  We'd built the Ranch to be a real community in and of itself, though certainly not one that excluded or shut out in any way the world at large. We constructed our Village to echo the old-time neighborhoods of years gone by, with staff, families, Ranchers, ourselves, and other intrepid souls who shared our vision.  If something went amiss, our Ranchers would have easy access to many people who knew them very well, and more important–cared about their welfare deeply.

And that's pretty much how things worked out.  The distinctions between us Typical People (TPs) (aka “individuals without intellectual disabilities”) and our Ranchers have blurred over time.  Naomi loves to kill dangerous snakes, Tom and his guys love to play sports in the street in front of their house, Andrew likes to garden, Valerie likes to sit on the porch and watch the world pass by, I like to mosey around with my dog Jenny, and Michael and Brian like to drive down to the pecan bottoms and look for wild pigs and hootie owls.

The Three Rules were formulated to prevent people from winding up in highly regulated environments such as the state institutions that horrified the nation a generation before–places where the residents were inmates and their personhood obliterated, where they wore uniforms with numbers instead of their names and lived in dorms with no personal space.

Down Home Ranch is nothing like that and never was.

We decided to have a meeting with our parents to address this issue, that threatened to cut their family members off from having HCS funding if they stayed at the Ranch.  The parents were outraged.  Their kids had begged to live here.  They were happy and well cared for, and had lives in which they enjoyed an abundance of choices. 

The parents began to call their state representatives to ask for help.  They signed up to testify at some of the few remaining stakeholder meetings.  They were eloquent and sensible.  Pressure on DADS began to mount.

The Rules came about because advocacy organizations and the educational establishment had pushed their agendas long and hard.  In the minds of many in these organizations every soul with Down syndrome, or autism, or whatever else qualifies as a disability can only be happy living alone in an urban setting, whizzing about town on public transportation, and livin' the vida loca.

Hey, I knew that guy!  But he was the only one I have met to date.  And while I don't doubt others exist, the fact is we're talking about a huge range of functioning among people with IDs, not to mention a huge range of interests, tastes, and preferences.

What about those who want to live in a neighborhood, with easy access to friends and colleagues?  Who love working with animals and plants?  Who might want to join a monastery of monks or nuns?

Not a typical neighborhood, says DADS.  What about the King Ranch and the other iconic Texas ranches?  Our pattern of life is pretty much just like theirs.  What about farmers and farm life?

What about personal choice.  Really?

All to no avail.  We faced losing funding for half our residents.  They would have to leave the place they themselves had chosen.

Then came a phone call.  From the Commissioner of DADS. She asked that we meet the next day with her counsel, and with ours.

Next day, we took our seats in the large conference room of the DADS building.  We were three, plus the Commissioner and about a dozen others.  Proceedings were polite, if guarded, and the end result was the offer of 20 ICF beds and the suspension of HCS services at Down Home Ranch.

We asked for, and received, the unprecedented concession that if and when our residents currently holding HCS left the Ranch, their HCS would be immediately reinstated upon their departure.  We accepted the deal, conflicted and grateful at the same time.

We felt even more conflicted when our attorney murmured darkly, “ICF.  I don't think you guys can manage ICF.  It's the same as opening a nursing home.”

But we knew we would, and eventually we did.  Thanks to DADS' action we were able to expand our residential program quickly, and our families had the assurance that their family member would be well cared-for without sending Mom and Dad into penury.  It was a huge concession from the state, and through it we learned that the heartless bureaucracy had a heart after all.

In fact, down the line we were granted four more beds for our ICF program to enable us to restructure into an economically more feasible configuration.

So….what's the problem?

The economic bust of recent years has forced governments large and small to look at new ways of doing things.  When the money spigot was flowing unimpeded, it was easy to envision rich models like HCS and ICF.   Ironically, for all its heralded benefits, HCS was designed from the outset to be at least 20% less expensive per client than ICF, yet with a wider range of choices.  (Residency on a ranch, alas, not among them.)

The number of people in these programs nationwide is only a fraction of the number awaiting services of any kind, and people with intellectual disabilities are aging at the same rate as he rest of us.  Huge numbers of adult children with IDs remain at home being cared for by their elderly, increasingly frail parents.  Agencies have struggled to meet the needs of the population but the funding simply has not been there for them to do so and is not getting any better.

HCS was an attempt to loosen up the rigid framework of ICF (more about that later) and provide families with more choice for less money.  Concessions on the family's part lay primarily in retaining a bit more risk and responsibility than under ICF.

The Centers for Medicare and Medicaid Services, CMS, is the federal agency responsible for oversight of state agencies such as DADS, and it was a ruling from CMS that DADS was responding to when it came up with its interpretations that would make it impossible for Down Home Ranch to continue with HCS at the ranch site.  (The Ranch retained its provider status and later opened two HCS homes in small towns close to the Ranch.)

So.  Families with adult children with IDs, faced with dwindling public resources, like Jerry and I 25 years ago (for we saw the handwriting on the wall even back then), are taking matters into their own hands.

Living day by day with their children with Down syndrome, autism, and other disabilities, these families understand all too well the challenges of providing adequate lifetime care for them.  They are also running up against the realities of their children's lives as opposed to the pipedreams of the professionals and academics.

(to be continued)