Scandinavian scandals

The Minister of Health of Denmark has boasted recently that by 2030 the government will have achieved its goal of no babies being born with Down syndrome.  This will be achieved not by research designed to override the effects of an extra 21st chromosome.  That would be a noble goal.

No, alas, it will be achieved with the blunt instruments of early detection and subsequent abortion.  (I have no idea what the Minister will do when he encounters, as he is sure to do at some point, parents who want their baby regardless of the Down syndrome.) 

And Sweden's health system was profiled today in the Wall Street Journal as a cautionary tale for Obamacare.  If a Swedish resident is diagnosed with an aggressive tumor today, he or she may have to wait nine months before beginning chemo and radiation to treat it. This insurance costs Swede an average of $20,000 per family per year, yet many are willing to fork over another $12,000 per year to purchase private health insurance in order to feel reasonably certain of receiving the care they need.

It's the tendency of governments when they take something over to promise everyone everything.  But they can't deliver that, or even come close, and so they do something we in the disability field are well acquainted with: they ration services via wait time.

That's why tens of thousands of Texans with intellectual disabilities have been languishing on the Home & Community-Based Services lists for a decade or even longer.  (At one point one of our residents received a letter informing him he could expect services no later than age 56.  He was 24 at the time!)

According to The Coalition for Community Choice, 4,902,835 people with intellectual disabilities (IDs) currently reside in the United States.  Of those, 1,389,611, or 29%,  currently live in an out-of-home residential setting.  That might be a three-person HSC home, an Intermediate Care Facility home of four, six, eight, 16, or 32 residents, in a foster-care situation, in a private boarding facility, or in a regular nursing home.

Nearly a million (852,923) of the remaining 3,513,224 still living at home with a relative or other caregiver are already 60 years of age or older.  If they are living with parents, those parents have already exceeded the actuarial estimates for their life spans.  These people face a very uncertain future.  (Over the years we have met families like this and, incredibly, most of them have no plans at all for their disabled adult child in place to assure their care when the parents die.)

Those million senior citizens with IDs represent only the most urgent aspect of this crisis.  After them come 2,242,484 younger people with IDs needing a place to live now or in the foreseeable future.

And how many new residential slots, from all the different programs, were created and funded from 1994 through 2011?

Fewer than one quarter of a million--244,195 to be exact. 

What are the prospects today for doing better than that hopelessly inadequate response?  The economy is weaker than during the 15 years referenced above.  If available monies were divvied up among all who needed them, it would amount to a pittance for each.

But there is hope, and there are solutions.  Just as Jerry and I looked around 30 years ago and said, "Nope, not for our kid," families all across the country are coming together to seek solutions.  FRED (Farms and Ranches Enabling people with Disabilities) has a saying: "For a family with a child with autism, tomorrow is already yesterday."

So moms and dads and sisters and brothers are making plans for their children.  They know their children and what kind of life will be rewarding and helpful for them.  Families particularly of children with autism are convinced that farm and ranch style settings offer the greatest hope for a good life for their child.

And how does our government respond to this initiative?  By passing rules that ensure that tax dollars intended for care of their children will never be disbursed to such a "facility," because the government is certain that living on a farm or ranch with other people with disabilities is prima facie bad and wrong.

This is why the Coalition for Community Choice will bring together all the ID communities--autism spectrum, Down syndrome, and others-- (and hopefully their advocacy groups, such as Autism Speaks, the National Down Syndrome Congress, and the National Down Syndrome Society) to press to change the Center for Medicare and Medicaid Service's rules that would bar clients of private, rural, or enclave communities from receiving services and support.

Truly, a good start would be for people to get out of their offices to go and visit place like Down Home Ranch and hundreds of other communities around the community and world.

Our doors are open, and you don't need an appointment.  Tomorrow I'll tell you what you'll see.

What is CMS up to?

A few weeks ago Jerry and I, along with Kelly and Sterling, attended a FRED Conference in Los Angeles.  We were all to serve as speakers or panelists.

FRED arose out of a group of parents of children with autism.  Knowing that many people with autism thrive in a rural environment, they seek to create living situations for sons and daughters. Golden Heart Ranch is one such endeavor, begun by Rose van Wier Hein, a driving force behind FRED.  Sweetwater Spectrum is another.

We were invited three years ago to attend because we had actually built a model in Down Home Ranch.  At that time we were pretty raw from our tussle with the state, and we cautioned our new friends appropriately.  This year FRED was rife with concern over the arbitrary rules both extant and in the process of adoption, that CMS imposes.

Paraphrasing from The Federal Register Volume 76, Number 73, April 15, 2011:

"...we sought public input [from citizen stakeholders] on strategies to define home and community-based settings where waiver participants may receive services. ...in response to isolated situations that have emerged where States or other stakeholders are expressing interest in using HCBS [HCS in Texas] to serve individuals in segregated settings or settings with a strong institutional nature.  For example, some proposed settings are on campuses of institutional facilities, segregated from the larger community, and do not allow individuals to choose whether or with whom they share a room, limit individuals' freedom of choice on daily living experiences such as meals, visitors, activities, and limit individuals' opportunities to pursue community activities."

In other words, private citizens are trying to recreate the State Schools of old!

Will Golden Heart Ranch or do Down Home Ranch and Sweetwater Spectrum fit this model?  Of course not.

Are we segregated from "the larger community?"  Would that be Elgin, Texas?  Does Elgin qualify with only 9,000 inhabitants or must we attach to Austin, with 2 million?  We have one another.  We have neighbors.  We have scads of volunteers to befriend our Ranchers, take them to church, invite them to spend holidays.  Are we chopped liver?

Our Ranchers eat breakfast and dinner at home and lunch in the dining room.  Their houses eat out a few times a month.  They certainly have input into the menus, but admittedly, we work hard not to offer junk food that many would prefer.

Anybody who has not been banned by court order may visit a Rancher at any time day or night without notice (although they risk missing the Rancher, who might be at Special Olympics, off to a festival, or in a class at UT, or working at HEB, or off shopping at Wal-Mart.

Activities?  See above.

The rules continue:

The setting "...must not be located in a building on the grounds of, or immediately adjacent to, a public institution, or must not be a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary [of Health and Human Services Administration].  ... must not have qualities of an institution, as determined by the Secretary. ...[which] may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual's [sic] ability to engage freely in the community."

But getting back to current reality, which is that Down Home Ranch, which is defined as an institution, yet functions very happily as such under ICF.  We even serve as a model for training new surveyors so they can see things done right

If we're happy, what's the problem?

Well, for one thing we have spent years engaged with other parents who are at wit's end with what they see in government-funded facilities, which is exactly what we saw:  loneliness, isolation, lack of freedom and choice. 

For another, ICF itself is needlessly constricting of our Ranchers' freedoms.  For example, we had to cut our annual cruise from five to four days (yes, you read right; we take an annual cruise and boy hydee do we have fun!) because our Ranchers are only allotted a certain number of days for vacation leave per year and we don't wish to cut into their parents' plans for such.

Plus, many of our Ranchers could live on their own.  Two were when we had HCS, but the state made us move them into a group home on the Ranch when we came under ICF.  Many could stay safely at home when they don't wish to go to a movie with the house, but they are not allowed to under ICF so they must hang out at another house until their mates return.

Nobody knows what will happen to ICF.  My guess is that providers will be told at some point that they cannot fill vacancies when they occur, and the scenario will quickly become too expensive to continue.  We are working hard toward self-support, so that when the cost/benefits ratio becomes too skewed against us, we can simply cut the ties and walk away.

That may sound impossible, but we don't think it is.  We are the only ones here who know--really know--how utterly unlikely it was that we should come to exist in the first place.  We believe in miracles, because we've seen them.

At FRED I spoke with many who have testified on behalf of congregate care communities like Down Home Ranch, but saw no reference in my research to an concerns they raised.  It seems CMS will listen to those whose opinions support their stance and chuck the rest. 

So that is where we are.  During our trials with the state, so-called "advocates" for people with IDs called Down Home Ranch a "fake community" among other things.  My guess is that they are good people who genuinely want what is best for my daughter and her friends.  My dream is that they would spend some time here.  Perhaps, like our surveyor, they would be bowled over.

One can only hope.

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) 

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)

Last night was the Gala, the second act of Down Home Ranch’s big annual fundraising weekend. 

Friday was brisk, clear, and breezy, but not too much so for a great day on the golf course.  About 130 golfers played, or played at, 18 holes on the beautiful Avery Ranch course.  All went off without a hitch, according to those who should know.

Saturday dawned cloudy and chilly, and we had all day to get ready for the Gala, held at the Bob Bullock Texas History Museum.  The Lt. Governor’s widow, Jan, graciously served as our honorary chair of the event, although she was unable to attend in person.  Still, it was very special looking around the beautiful interior, all decked out for our gala, and knowing we had her blessing for this event.

The gala followed weeks of meetings and reviews of the “run of show.”  Kristin and Andrea were ready at the payment table, and Kristin’s twin sister Krystal, their mom, and Casey held down the reception desk.

Seventy or so items were laid out for inspection with their bid sheets in the silent auction area, and the catering lines were ready to go.  Jerry fretted about my speech (but not his). 

We conferred with Andrew, the auctioneer/MC, on last minute details before getting ready to launch the serious part of the evening: matching a $100,000 challenge grant from the Still Water Foundation of Austin.

Then a most delightful cog slipped in our well-oiled machine... 

A dear friend of the Ranch surreptitiously handed us a letter outlining a complex offer to match dollar for dollar the first pledge of $10,000 made that night, and also the first pledge of $5,000.  After that he would pledge $2,500 for each pledge of either up to a personal investment of $50,000.

He wished to remain anonymous.

When it was time for the “Paddles Up” portion of the evening, Andrew played the video  prepared for the evening—a lovely short piece consisting of clips of our Ranchers at their work.  Then I stood to prep the audience for the evening’s ask.

I led off with an overview of the importance of our work program to our Ranchers.  Fees for service paid by Medicaid funds cover housing, food, and staffing, but although there is expectation imposed for some sort of day program for the “consumers” receiving services from the state, there is no money to support such a program.

That’s why so many adults with intellectual disabilities sit around coloring or sitting on the couch watching TV. 

But we’d figured from the outset that a Ranch setting was one with a skill level for everyone, and there was no reason at all that our Ranchers would be unable to contribute substantially to the work of the Ranch—from birthing calves to working in the kitchen.  That’s what we’ve always worked toward, even though frankly it would be cheaper to hire people who already know how to do these things rather than train our Ranchers to.

And now the grant from the Still Water Foundation would enable us to take a gigantic leap into the future, if all went well.

So I spoke a little about the importance of work for everyone, how it puts our Ranchers on an even footing with the rest of the world to have a job, be good at it, and earn a paycheck in the process.

I had Mike Larcher stand up, and told about his pride in scooping horse poop, even to the point of proudly proclaiming one morning to me, “Look, Judy, they made more!”  The little story got a laugh, as I knew it would, and Mike stood and beamed.

Then I mentioned our chickens, and how they were supplying the whole Ranch with eggs to consume, and eggs to sell.  “They’re laying 90 eggs a day now,” I said proudly.

Then way back in the crowd, a familiar figure stands up.  It’s King, aka the “egg man,” who cares for the chickens, even driving down nightly after supper in his golf cart to lock them up safely for the night.

“They’re not laying 90 eggs a day, Judy,” he admonished sternly.  “They’re laying 100 eggs a day!” 

The crowd laughed and applauded.

Then it was time for Paddles Up.

We knew there would be a $10,000 pledge, because we were prepared to make one.  We recently sold our condo in Austin and figured it could serve as part of our tithe, so Kelly was all set with our bid paddle to pop up when Andrew called for a $10,000 pledge.

Oops, a man at the next table, a fellow parent of a child at DHR, surprised us!  His was the $10,000 matched by our generous benefactor.  Ours was the next and last.

Then at the next table, a dear friend pledged $5,000.  Swiftly following that, pledges were taken for progressively smaller amounts (but which, of course, mounted up in higher numbers).

Our good friend who’d pledged the $5,000, possessed of a puckish sense of humor, began “matching” the pledges coming in with a quarter.  It got a laugh each time.

But then something magical happened.  The Ranchers in the audience, seeing that Andrew was accepting 25 cent pledges, realized that they, too, must be in the running, and began bringing their quarters and dollars (and even a silver dollar coin!) to Andrew.

This was nothing we could have, or ever would have, planned.

Our puckish friend was engaged in a little mischief.  But our Ranchers were acting in dead earnest to meet our goal.

I leaned to a table mate and whispered, “We’re seeing the widow’s mite in action.”  With tears in my eyes, I admit.

By the end of this glorious evening, we, and friends assembled, had met the $100,000 match dollar for dollar, with funds left over, thanks to our Ranchers. 

After that, it was party time, as we danced everything from the conga line to the hokey pokey to the great music of the Aristocrats.  Usually it’s our Ranchers who dominate the dance floor, but last night twice as many guests as usual joined in the fun.

I heaved a sigh of relief and made some lame jokes about attending someone else’s gala so I could have fun and relax, eat, and buy things at the silent auction—none of which I’d done at ours.

But that’s ok.  I witnessed the hearts and souls of our Ranchers in action, and saw clearly that they understand what we’re all trying to do together, they get it, and they want it.

And no event could deliver more than that.