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.