It’s your choice! (Or is it?)

“Hey, Buddy!  I’ll take you to get some ice cream.  We’ll go anywhere you want as long as it’s Baskin-Robbins, and you can have any kind of ice cream you want as long as it’s vanilla!

“It’s absolutely your choice!”

This is the message of your federal government, as articulated by Mark Olson, head of LTO Ventures and the single father of an 18-year old daughter with severe autism. 

Some choice, no? 

I’m getting deja vu all over again.  Here at the Ranch we’ve been through this before, you see.  Here’s our story.

In 2007 Down Home Ranch was up and running on a modest scale.  We had three homes open at the Ranch, each with three residents apiece, all having decided after attending Ranch Camp that this is where they wanted to live.

There we were, we band of brothers and sisters, we happy few.  Then the apple appeared in Eden, and of it we did eat.

It appeared in the form of what is known as an HCS waiver, funding “provided” by the federal government for “services” for “consumers” with what we now refer to as intellectual disabilities.  A new resident had this funding, which the family had waited for for a decade or so, and they didn’t want to lose it.

In order not to lose it, they had to use it.  To figure out how to use it we convened a meeting of the young man’s case manager and program director, employees of the agency administering the waiver.

In our two-hour conversation I half expected the March Hare to wander in at any moment.  Following is my mental reconstruction, what today we call the “take-away.”

Program Director:    The HCS was designed to offer maximum choice to the consumer.  that’s why families want it and it’s so valuable.

Down Home Ranch:   That’s fabulous.  Choice over what?

Program Director:   Housing, jobs, friends…every aspect of life!

Down Home Ranch:   Great!  So how does “Sam” use his HCS?

Program Director:  He will have a paid companion come and pick him up and take him on community outings.

Sam:   Can Adam [best friend and housemate] go with me?

Program Director:  No.

DHR:  Why not?

PD:   Only a non-disabled friend can accompany Sam on a community outing.  You see, the whole point is to eliminate segregation of people with disabilities.

DHR:  But he wants his best friend to go.

PD:   I’m sorry.  That’s not possible.

Sam:   I don’t want to go.

But, Sam had to go anyway, in order not to lose his services, which he didn’t want to use.  (Perhaps they went to Baskin-Robbins…)

If the tale had ended there, it might have been better for all concerned.  But, it didn’t.  We tasted of the Kool-Aid and it was sweet.  We became more involved with HCS for a very important reason.

Back up time.  We’d always envisioned the Ranch as a place for those who wanted to live there, regardless of ability to pay.  That lasted about six months into the residential program when we realized just how expensive direct care is.  The Board imposed a fee to parents on a sliding scale.  It helped. 

We were aware, however, of the financial strain it imposed on our families, as moms who had been retired for several years elected to return to employment.  The long-term picture looked a little wobbly, financially speaking.

Other Ranchers’ names began to come up on the HCS waiting list.  It was determined that if we became official providers they could receive funds for supervised living and other services, so Jerry and I attended meetings offered by the Department of Aging and Disability Services (affectionately, or not, known as “DADS”). 

The day Katrina hit New Orleans Jerry and I went for the final sign-up and exam, administered to make sure we knew what we were doing.  He had decided that since I would administer the program I should take the exam.  Somehow I managed to pass it and we were in business.

One after another of our Ranchers got their waivers and soon over half were supported by the program.  All seemed well for two years. 

Then one day during a routine inspection by DADS of our houses and programs, I escorted one of the surveyors through our new, spotless Barnabas House, where each Rancher had his own large private bedroom.  The surveyor had been there for two days, and as we exited the house turned to me and said, “You know, I’ve heard about this place and I was very dubious about it, but now I get what you’re doing.  I really get it, and it’s beautiful.”

Later that evening, after finalizing the exit interview with our case manager, the surveyor stopped by and said: “Mrs. Horton, I just wanted to let you know about three rules about to be implemented that might affect your ability to offer HCS services here at the Ranch.”

And so began an adventure.

(To be continued)