A little over a month ago, the Centers for Medicare and Medicaid Services proposed some new rules for home- and community-based services for people with disabilities, trying to ensure that states do everything they can to make sure that disabled people covered by Medicaid can actually get the services they need in their own homes, or in supported residential settings where they have the same amount of freedom and control over their own lives that they would if they were living on their own.
That's the spirit of the law, anyway. Lots of advocacy groups made up of people whom this law is supposed to benefit have written recommendations for wording that makes sure the letter of the law honors the spirit --- that health-care providers receiving Medicaid funding to give people supportive housing don't just take the money and throw the intended beneficiaries into a group home that reproduces all the restrictions, power dynamics, and other bad things about institutions in a somewhat different setting.
The rule change is open to public comment until Monday; I'd like to add my voice to a chorus of voices emphasizing just how important autonomy and freedom from restriction are. If you have anything to say about it, especially if you've got any concrete ideas or relevant personal experiences, go here, click the big blue "Comment Now!" button, and let loose.
The Autistic Self-Advocacy Network and the Administration on Intellectual and Developmental Disabilities have both written about this proposed rule change; AIDD's page is an easy-to-read summary of what the rules entail, while ASAN's page is more of a critique.
Here is the proposed definition of "home and community-based setting":
(i) The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, in the same manner as individuals without disabilities.
(ii) The setting is selected by the individual from among all available alternatives and is identified in the person-centered service plan.
(iii) An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected.
(iv) Individual initiative, autonomy, and independence in making life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented.
(v) Individual choice regarding services and supports, and who provides them, is facilitated.
(vi) In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modification of the conditions, for example, to address the safety needs of an individual with dementia, must be supported by a specific assessed need and documented in the person-centered service plan:
(A) The unit or room is a specific physical place that can be owned, rented or occupied under another legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that tenants have under the landlord tenant law of the State, county, city or other designated entity;
(B) Each individual has privacy in their sleeping or living unit: (1) Units have lockable entrance doors, with appropriate staff having keys to doors; (2) Individuals share units only at the individual's choice; and (3) Individuals have the freedom to furnish and decorate their sleeping or living units.
(C) Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time;
(D) Individuals are able to have visitors of their choosing at any time; and
(E) The setting is physically accessible to the individual.
They also spell out what a "home and community-based setting is not:
Home and community-based settings do not include the following:
(i) A nursing facility;
(ii) An institution for mental diseases;
(iii) An intermediate care facility for [people with intellectual disabilities]
(iv) A hospital providing long-term care services; or
(v) Any other locations that have qualities of an institutional setting, as determined by the Secretary. The Secretary will apply a rebuttable presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient or institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex.
And here is the definition of "person-centered service plan":
The person-centered service plan must reflect the services and supports that are important for the individual to meet the needs identified through an assessment of functional need, as well as what is important to the individual with regard to preferences for the delivery of such services and supports. Commensurate with the level of need of the individual, and the scope of services and supports available under the State plan HCBS benefit, the plan must:
(1) Reflect that the setting in which the individual resides is chosen by the individual.
(2) Reflect the individual's strengths and preferences.
(3) Reflect clinical and support needs as identified through an assessment of functional need.
(4) Include individually identified goals and desired outcomes.
(5) Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports cannot supplant needed paid services unless the natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS.
(6) Reflect risk factors and measures in place to minimize them, including Individualized backup plans.
(7) Be understandable to the individual receiving services and supports, and the individuals important in supporting him or her.
(8) Identify the individual and/or entity responsible for monitoring the plan.
(9) Be finalized and agreed to in writing by the individual and signed by all individuals and providers responsible for its implementation.
(10) Be distributed to the individual and other people involved in the plan.
(11) Include those services, the purchase or control of which the individual elects to self-direct, meeting the requirements of [earlier section] of this subpart.
(12) Prevent the provision of unnecessary or inappropriate care.
(13) Other requirements as determined by the Secretary.
... and rules for how the service plan should be drawn up:
Based on the independent assessment required in [earlier section] of this subpart, the State must develop (or approve, if the plan is developed by others) a written service plan jointly with the individual (including, for purposes of this paragraph, the individual and the individual's authorized representative if applicable). The person-centered planning process is driven by the individual. The process:
(1) Includes people chosen by the individual.
(2) Provides necessary information and support to ensure that the individual directs the process to the maximum extent possible, and is enabled to make informed choices and decisions.
(3) Is timely and occurs at times and locations of convenience to the individual.
(4) Reflects cultural considerations of the individual.
(5) Includes strategies for solving conflict or disagreement within the process, including clear conflict-of-interest guidelines for all planning procedures.
(6) Offers choices to the individual regarding the services and supports they receive and from whom.
(7) Includes a method for the individual to request updates to the plan.
(8) Records the alternative home and community-based settings that were considered by the individual.
(That has got to be the greatest number of time I have had to type the word "individual" on any given day.)
I think this all sounds fairly complete, and airtight, but then I have zero experience actually living in this kind of environment.
What do you, my readers, think? Do any of you have anything you would add, or change, to the above specifications? Without your input, I'm pretty much going to be echoing ASAN's recommendations in my comment on regulations.gov, but I'll hold off on commenting until, say, tomorrow night or Monday morning to see if I get any additional recommendations from comments here.
So, apparently Kevin Drum, a political commentator I don't read but who is apparently somewhat well-known, has written an article for Mother Jones declaring the fight over how whether biology is taught in public schools an irrelevant sideshow.
I was nonplussed by this. Obviously, it's not the most important issue in the world --- it doesn't pose an existential threat the way climate change, peak oil/peak everything, overpopulation and hunger do, and it doesn't have the dire social consequences (or moral urgency) of, say, restricting access to contraception, the mass incarceration of people of color and poor people, increasing economic inequality or the deliberate demolition of the welfare state --- but I still felt like it had some importance that went beyond mere cultural border-policing*.
Amanda Marcotte at Pandagon and PZ Myers at Pharyngula both responded to Drum's article, and each of them made points that rang true for me, and helped explain why his statement bothered me.
Amanda:
I have to admit, I'm boggled at Kevin Drum's reaction to the news that nearly half of Americans are young Earth creationists ... . He completely misreads the situation and frankly does so in a way that I personally felt thrown under the bus.
...
Kevin takes it as a given that fights over what's taught in high school are strictly about symbolism and have no real importance. I suspect that's a much easier view to take if you're the beneficiary of a good public school in a blue area or lucky enough to have gone through or been able to put your own kids through private school. For someone who went to a rural high school in Texas, the notion that high school doesn't matter strikes me as ridiculous in the extreme.
The reason conservatives target high schools (and junior high schools and elementary schools) isn't because they're playing for peanuts. On the contrary, conservatives understand something liberals don't, which is that if you get people while they're young, you usually have them for life. This is also, incidentally, why conservatives pay more attention to pop culture than liberals. Liberals are great people --- I'm one of them! --- but we have a tendency towards preening individualism and therefore discount the importance of things like what's in the classroom and what's on TV because we personally feel we're iconoclasts who aren't affected by it. Which can, in this case, cause us to neglect to remember that in fact this is the air that most people breathe, and the quality of that air matters.
I also had strong feelings of no you're wrong when I read the paragraph in Drum's article where he dismisses "a 10th grade understanding of evolution" as something so piddling as to be dispensed with entirely, so much does it pale in comparison to the understanding of evolution one gets (presumably) in college, or in books on evolutionary biology. PZ, along with a slew of other biology professors in his comments and at Mother Jones, takes him to task for this; they write that, no, actually, they have noticed a change in how readily their students grasp what they have to teach. Almost as if high school curricula were geared toward preparing the students for college ...
Anyway, what felt unfair to me was his assumption that, if people needed the knowledge, they could always pick it up elsewhere. This made me angry, because for many people there is no "elsewhere," or at least not one that is immediately accessible without guidance.
(Who has tried to teach themselves a completely novel subject by checking out books on it from the library? Isn't it hard to figure out which books will be the ones you need? Technical books are often overly specific and assume you've already got a grounding in the subject, and are interested in exploring a particular question within it, and books for laypeople might not be thorough enough, and also might not be trustworthy).
As for college, well, not everyone goes there, most of the people who go there will never encounter evolution in the classroom --- I didn't, and I majored in a biological science! --- and, again, college professors have enough to do without having to burn up lecture time with remedial material and correcting misinformation. Plus, not all colleges are created equal; some
To top it off, what you know before college helps determine where you go, whether you go at all, and what you study! College is expensive, and for many prospective students (I know I felt this way when I was applying to colleges) the size of the scholarship you can get makes the decision for you. Scholarships for merit, as opposed to need (and there will always be more people who can't really afford college than there are people officially deemed too poor to afford college on their own), depend on how one performs on standardized tests. And what does standardized test performance depend on? What you learned in high school.
There's more: as Amanda also points out, what you're exposed to in high school shapes your interests and aspirations:
[M]y high school biology course didn't teach evolution. Without evolution, biology actually doesn't make sense, and instead it's just an anatomy class. ... I had no idea how fascinating biology actually was until I was an adult, and long past any chance of starting on that as a career path. Not that I think I would, but you can easily see someone like me making that choice as a young woman, but not really being able to because I was never offered that option in a realistic sense to begin with.
(As someone who did study biology, and who loves Amanda's writing about science- and skepticism-related topics as much as I do her feminist writing, I can see it. Her interest in the subject is obvious, as is her commitment to find out what's true and how we know it's true. While she won't --- can't --- go into the kind of technical details I sometimes do here, her grasp of general, foundational principles is firm enough that I can easily forget she does not possess a biology degree herself.)
To shift to another aspect of why Drum's assessment is so horribly, horribly wrong, I quote PZ:
[T]his is going to be the century of dependence on the sciences. Climate change is going to hit us all; environmental crises are going to rise up all over the place; we're going to face shortages of energy and fresh water; emerging diseases will be a major concern; new biomedical technologies will cause cultural shocks; the whole world is going to change. Most people, I agree, will not be doing the research that leads to changes, and most of these problems will require political and social changes to correct, but how are you going to convince people to, for instance, change their fuel consumption habits when they're in complete denial of basic facts? How can you expect people to appreciate the importance of ecology and global interactions when you tell them that evolution doesn't matter? How will you get them to make rational decisions to control pandemics when they can't comprehend probability, epidemiology, and viral/bacterial evolution on even the most basic level?
Most importantly, though, this utilitarian attitude that all that matters is what people can directly use in their day-to-day life is a denial of the Enlightenment and principles on which our country was founded. It's a rejection of the liberal idea that human beings should be well-rounded and informed individuals --- the informed citizenry that should be the foundation of a democracy. We can't expect everyone to be biologists or poets or political scientists, but we should expect that one outcome of a public education is an appreciation of the breadth of human endeavor, and at least a smattering of the fundamentals of a wide range of subjects, sufficient that, to make it practical again, students can make informed career decisions and understand a basic argument from evidence from an expert. We lack that now. And to wave away a simple but essential starting fact about our existence as unimportant is deeply offensive.
I would add to his first paragraph that you don't have to wait for some futuristic nightmare scenario for these things to affect people's lives. Disease-causing bacteria are already becoming resistant to a whole lot of the antibiotics we use to fight them; lots and lots of species have disappeared or are disappearing; sensitive ecosystems are already being stressed, some to the breaking point by human activity, and humans are already failing to see why they should care***.
The picture he paints in that first paragraph has already come to pass, in the way that the proverbial camel is already in the tent, he just needs to take a few steps forward before it becomes obvious to everyone.
I would also add something else that I think denying evolution does: it makes it easier to think of humans as separate from, and above, the natural world and all those other animals. It allows us to think that what we do to it, to them, will never get back to us.
(You don't have to deny evolution to get to that mindset, though: I see it arising just as readily from the erroneous view of evolution as a teleological process of development from simple to complex organisms, with humans sitting triumphantly at the apex. I've posted before about my annoyance with this picture of evolution.)
*This is what Andrew Sullivan, another famous political commentator whom I know to be obtuse, thanks to driftglass, an obscure political blogger who is quite acute**, has called belief in creationism a "cultural signifier" that describes the group membership of the believer rather than what that person actually believes about reality. That whole line of reasoning makes me queasy, but even if he is right that no one actually believes the Earth is six thousand years old and every animal species living on it was molded from clay and animated with the breath of a god, if that is what they decide shall be taught to children as fact, in place of the full history of life on Earth (as much of it as we know, anyway) and an explanation of how life on Earth has changed as Earth itself has changed, then those children grow up with a much poorer understanding of the world around them. An idea can have consequences in the real world whether people truly believe it or not; all they need to is act as if they believe it. Also, Andrew Sullivan is dumb.
**Hee. I made a geometry pun.
***This is not, at all, meant to be an exhaustive list, or even a primer on any of those subjects. I just put a recent news/research story in every link to make the point that, yes, this stuff is happening, and it's not just one or two isolated incidents.
