Jerry and I, plus several staff members and 16 Ranchers with Down syndrome just returned from Indianapolis where we attended the annual convention of the National Down Syndrome Congress.
Jerry and I went in a few days early in order to visit a sister village community in Ohio, about an hour away. It's called Safe Haven Farms, and is the brainchild of Dennis and Ann Rogers, who have a 34-year-old daughter with severe autism.
Safe Haven Farms could easily double as a movie set, with its beautiful buildings nestled in the gentle green hills, gardens, ponds with ducks on parade, grazing llamas and miniature horses.
As we drove in the front gate, a tall, very thin young man planted himself right in the middle of the narrow lane. He was accompanied by a staff member, who attempted in vain to convince him to move out of our way so we could drive in. We waved at her to indicate she shouldn't stress about the situation; we were in no big hurry.
Several minutes later the young man moved of his own accord and the pair continued their journey to wherever they were going. All he needed was time to make up his own mind about the situation.
Dennis and Ann met us and gave us the royal tour. We swapped stories as we went along and at one point, as we were headed to the residence cottages Ann said, "I'll just stop in and see how our girl is doing today. She's been having a hard time of it the last few days." I offered to accompany her and received an instantaneous and emphatic "No!" I got the message and continued on with Dennis and Jerry.
Dennis showed us homes customized for adults on the severe arc of the autism spectrum--painted flowers and murals on the walls instead of mirrors or pictures, TVs completely encased in wooden cabinets that prevented their being picked up and thrown. No glass. Shades encased within double paned safety-glass windows and operated by a lever to adjust the amount of light coming in. Plus many similar accommodations. It sounds stark, but the homes look like what they are--homes.
Needless to say, Safe Haven's staffing ration is quite a bit higher than ours, one-on-one to two and sometimes three-on-one. Ohio has a regulation that does not permit the landlord--individual or corporate--to provide the programming for people with intellectual disabilities, so all program and staffing is handled by Bittersweet Farms, another provider.
When Ann and Dennis despaired over ever finding a living situation suitable for their daughter after she left high school, after several spectacular failures, they decided in the mid 2010's to take on the task themselves. They understood as few others the challenges involved in caring for a son or daughter on the severely-affected end of the spectrum.
They were encouraged by government agencies, and why wouldn't they be? Here were two incredibly energetic, experienced people ready to devote their lives and their fortune marshalling resources to create a place where the most difficult to serve men and women, like their daughter, could live and grow. (And incidentally, in doing so, they would save the taxpayers of the US and of Ohio millions of dollars and provide the best care possible. two eminently worthy goals!)
Well, that was then. The day before our visit the state head of the Department of Disabilities visited to gather information and provide feedback concerning the rules promulgated by the Centers for Medicaid and Medicare Services of the federal government.
These are the rules that say: No segregated environment. No one-disability communities. No rural villages. No names like "Safe Haven." (Heaven forfend! Do they prefer "Hell's Kitchen?")
And for that matter, no in-ground swimming pool, a much-desired item for the Farm.
Why not? The Farmers love to be in the water. Several are good swimmers, but even those that don't swim love the feel of the water on their skin. (My theory is that it's because the water helps them know where they leave off and the rest of the world begins.)
But...having your own swimming pool is "institutional," and you should really be taking the Farmers to the nearest community pool to swim.
Now the following are purely my own observations, and I ask, in what universe are these people living? Do they have any understanding at all of the challenges involved in providing optimal care for adults on this part of the spectrum? I cannot believe that they do.
I met a very well known advocate for people on the spectrum, who is herself on the spectrum. She is rightly famous, and lauded for her many accomplishments. At the time I was accompanied by one of our Ranchers, a man on the spectrum who struggles tremendously with anxiety, Tourette's, and OCD. He knew of her work and wanted to meet her.
This man picked out Down Home Ranch as his home many years ago, long before we had an opening for him. (In fact, when he learned he could not come right away after doing his residency trial, he filled a jug with water and ran away, determined to live here at the Ranch even if he had to do it in the woods!).
This women dressed me down then and there, saying that he should be living on his own, he was obviously smart and capable, and he had no reason to be living sequestered out in the country somewhere on a "segregated" ranch.
But what about the fact that he loves the Ranch? He can go fishing whenever he wants. He grows his own garden and takes care of it by himself. He loves nature and feels comforted being in the outdoors. Does he get a choice in this matter?
Village communities all over the country are organizing to address this rule. We are not saying everyone should live in a village community.
But why are the advocates so determined that nobody should?
Showing posts with label Coalition for Community Choice. Show all posts
Showing posts with label Coalition for Community Choice. Show all posts
Wednesday, July 16, 2014
Friday, April 18, 2014
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.
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.
Thursday, April 10, 2014
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 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)
Tuesday, April 8, 2014
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)
"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)
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