Gifts from God and the Government

It's hot again.  Dog days.  Lots of jeremiads in my daily scripture readings, so I thought
I'd write one of my own.

A lovely family visited on Wednesday.  I greeted them, answered some questions, and then sent them off with Mark for a tour of the Ranch.  Their daughter was politely disinterested until Mark and the other Ranchers showed up, and then she lit up like a Christmas tree! 

After they returned they had more questions, largely concerning funding of the Ranch and how it works.  Whenever I need to explain these things I think back to the early days of the Ranch, when I labored in utter mystification and ignorance of “The System.”

The System encompasses–for a start–the agencies of: Social Security Administration, federal and state Health and Human Services, the Centers for Medicare and Medicaid, the Department of Aging and Disability Services, Mental Retardation Authorities of the state of Texas, state and local fire marshals and life and safety agencies, the Texas Dept. of Health and Sanitation, etc. 

And that's just for your run-of-the-mill kid with Down syndrome.  You can also get involved with a plethora of other agencies with an investment in your child should you have complicating medical, psychiatric, or other needs.

I recall a friend in the early days who showed up for what she thought would be a routine meeting with her school's special ed team and discovered a hoard of representatives present for the “transition” of her son, who was turning 18, all with papers for her to sign and plans for her boy.  (This was in the days when there was money for this sort of thing.  Theoretically, anyway.)

“I was horrified!” she cried.  “It was like they were there to take custody of him!”

Back then it was almost impossible to figure The System out from scratch.  Today, it's not easy, but it's possible due to the ‘net.  Not easy, but possible.  DADS has a good website that explains the different programs.

Which brings me to the point of all this, the heart of my jeremaid, which is the distinction between the two major publically-funded residential programs for people with intellectual disabilities.  Settle in for a long story…

Back in the mid 1800s, believe it or not, there were a fair number of places something like Down Home Ranch, located in the country, centered on providing a humane, decent life and care for people with IDDs, then classified into three major divisions: Idiots, Morons, and Imbeciles. 

Yes, those were scientific terms.

They were charitable in nature, and arose from a desire to help.  Their residents did farm chores and lived together in a small community that they seldom if ever left.  Their live spans, lacking today's medical interventions, were generally short.

At some point that model was taken over by the state.  These communities became bona fide institutions, and over time became ever more crowded, dumping grounds for unwanted souls.  Medical researchers began using their inmates, which of course included children, for medical experiments, some of which were quite comparable to those carried out by the Nazis.

By the time Robert Kennedy carried out his investigations (thank you Geraldo Rivera and the Kennedy family) of how our nation's mentally ill and mentally incompetent were treated, conditions had reached a state that would surely–surely–break the heart of any decent human being.

I cannot bear to give examples.  Google if you dare.

In the 70s things began to change due to outcries over the revelations of the federal investigations.  The Education for All Children Act was passed.  And the feds took over the delivery systems of mental health/mental retardation of several states, Texas included.

State “schools” began to improve dramatically as states were forced to step up the funding of them.  Although the campus-based model for service delivery was coming to be seen as undesireable and in some way causative of the conditions that had so horrified the nation, they improved to the point where the parents of those who lived in them actually formed advocacy groups to keep them open.

To get people out of the institutions, the desireable model came to be seen as “living in the community,” and so the Intermediate Care Facility for Mentally Retarded (ICF-MR) was born.

ICFs-MR allowed people to live in smaller aggregations (generally six to 32), and were intended to get them out of state schools and nursing homes, until then the only alternatives to remaining at home with Mom and Dad.

ICFs-MR were located in regular neighborhoods (initially there were lawsuits to keep them out but fair-housing acts prevailed).

ICFs-MR bettered the lives of a lot of people.  Some of them were the people served, and some of them were the people who set up compaies to serve them as ICFs-MR became cash cows.  (Which, by the way, didn't necessarily mean that those companies did not do a good job–back in the day there was enough funding available to allow for some very tidy profits.)

Down Home Ranch is today an ICF-MR.  Long gone are the days of lavish reimbursements for caring for people with IDDs, which is a very, very expensive undertaking.  Although the basic reimbursement sounds generous, when a provider takes in a client (or “consumer” as they're called these days, though I can't bear that term and refuse to use it) it assumes total and complete responsibility for every aspect of his or her care–health, wealth, and pursuit of happiness.

It costs a lot of money, so much money in fact that the feds decided in the 90s to phase out the program and figure out a way to save some of it.  Happily, a lot of academics and agency thinkers were deciding that the ICF-MR model was outmoded and what was really need was choice for the consumer–choice of where to live, with whom to live, how to live.  The “Money Follows the Person” model was born!

And HCS, or Home and Community Based Services, began to be rolled out in various states as a “Medicaid-Waiver” program, along with a handful of others.  (What are you “waiving” you may well ask.  The answer is: the right to live in a nursing facility which is the technical classification of an ICF-MR.  I wondered for years!)

HCS was touted far and wide, high and low, as the best thing to be invented since cheese.  Clients were put on waiting lists for HCS, under which, we were promised, we would find the sweet promised land, our beloved children living in loft apartments in downtown Austin, taking the bus to work at Whole Foods, enjoying the fine urban life.

The waiting lists grew, and grew, and grew.  And one day we woke up to discover just about all the people in Texas with IDDs were on it, several tens of thousands of them.  They had projected waits of from seven to 67 years (yes, really, one of our Ranchers was told he could expect a wait of 67 years).

Headlines blared that 40,000 people in Texas were waiting for services.  Meanwhile, ICFs-MR were sitting vacant, ready to be moved into tomorrow as families erroneously believed that you also had to wait to get into one of those.

But…if you wait that long for something, it must be really, really valuable, right?  Well, maybe.   Here are the interesting facts:

Yes, HCS is an alternative offering more choice, but that choice comes at a cost.  One of the costs is that the family assumes (or retains) more of the risk and responsibility for caring for the client.  Not necessarily a bad thing, but remember this: Whereas the academics and agency thinkers were desiring more freedom of choice, the government money-mavens were desiring lower funding of services.

So HCS funding for any client is capped at 80% of what it would cost to care for a person in an ICF-MR facility.  It's a cheaper alternative!  Who knew?!

I hear all the time:  “We've been told that HCS is the Cadillac of the service delivery programs.”  Parents are shocked when I tell them the facts: that they will have to justify every service they want for their child under HCS.  Under ICF-MR regs those services are mandated.

The upshot?  It will prove ever easier to choke down funding under HCS as our public funds continue to dry up.  (We've already sustained significant cuts and fully expect more to come.)

There are other problematic aspects of HCS, and one big one is that providers must agree to abide by is the “zero-reject” policy.  A common problem in the small group HCS homes is that a client leaves and a new client appears on a first-come, first-serve basis and this client turns out not to be somebody you would want your child living with.

We parents have most of us been through this before in our child's public schools.  We removed our daughter from school twice because of the presence of students who were a physical menace–first from middle school, and second from high school when they moved up from middle school–and not so much because we feared for her physical safety as because of the fact that all resources were now shifted to maintaining effective control over these boys.

One of those boys could show up on our doorstep tomorrow and demand to be served, and if we had an HSC opening, we would have to serve them, no matter the costs–financial and otherwise–this would impose on us, and (much more to the point) the cost in degradation of quality of life it would impose on the other two men in that home and the other clients in the providers' program.

There are other problems with HCS, too, such as the implied assumption that other people with disabilities are not fit to be friends of people with disabilities.  We had a resident years ago on HCS who had a Community Integration Specialist (or something of that ilk) assigned to him to “take him out in the community” on a weekly basis–you know, go to a movie, shop, go bowling.

He was all for it but wanted a buddy to go with him.

If the buddy had not had a handicap, there would have been no problem, but as it was one of the buddies he lived with and he did have a handicap, he was not eligible, because he had a handicap.  Got it?

He wound up having to go with his CIS on outings he came to dread in order to keep on consuming his HCS services and not lose his slot. 

But that's how these things work, alas.  The Health Department would come out in the days before we had a real pool and make us put an 8′ fence with a locked gate around our 3′ above the ground splash pool but ignored the 20′ deep pond a few hundred yards away because they only had jurisdiction over the 3′ pool.

I suspect this was something of a waste of taxpayers' money, but I can't prove it because it's possible 12 people did not drown because of that 8′ fence…I guess.

More tomorrow…I gotta to go work.