How many in the U.S. are disabled?
November 17, 2023 10:26 AM Subscribe
Proposed census changes would greatly decrease count (archive)
Seltzer, for her part, agrees that the more comprehensive WG-SS could “potentially yield greater insights into disability” in the U.S., but worries that many policymakers will use the 8% statistic [vs 14%] to cut funding to programs that help disabled Americans.
The proposed change will be open for public comment until 19 December
Seltzer, for her part, agrees that the more comprehensive WG-SS could “potentially yield greater insights into disability” in the U.S., but worries that many policymakers will use the 8% statistic [vs 14%] to cut funding to programs that help disabled Americans.
The proposed change will be open for public comment until 19 December
How would this play into those disabled by covid, I wonder?
posted by tiny frying pan at 11:14 AM on November 17, 2023 [9 favorites]
posted by tiny frying pan at 11:14 AM on November 17, 2023 [9 favorites]
The underlying change sounds like a substantial improvement to the data collection. People just can't resist reducing complexity to a binary...
'Are you disabled?' in real life is indeed a complex question. In funding, it's reduced to a binary one. Making this change = less funding for disabled Americans.
posted by LlamaHat at 11:17 AM on November 17, 2023 [37 favorites]
'Are you disabled?' in real life is indeed a complex question. In funding, it's reduced to a binary one. Making this change = less funding for disabled Americans.
posted by LlamaHat at 11:17 AM on November 17, 2023 [37 favorites]
To me, having looked at both the article and the linked study, one of the major problems is that the WG-SS doesn't include a question about running errands or similar. This is where chronic illness/chronic pain really makes itself known, in my experience--I myself can function and even work, but holding down a job is all I'm capable of. Doing any extra tasks like errands are nearly impossible because I just don't have the energy. COVID has been a blessing in a way because drive-up has appeared all kinds of places that never had it in my small Midwest city before--I can order online, drive to the grocery or Target, and get things loaded in my car for free. If I had to actually get out of the car and shop, I wouldn't be able to. None of that will be captured on this new survey because they aren't asking this question.
I think nuance is good and scaling questions are better than binary, but I question why they're getting rid of such an important measure of functioning.
posted by epj at 11:34 AM on November 17, 2023 [28 favorites]
I think nuance is good and scaling questions are better than binary, but I question why they're getting rid of such an important measure of functioning.
posted by epj at 11:34 AM on November 17, 2023 [28 favorites]
Neither set of questions seems very good, really. In the new version, a person can say they have some difficulty bathing and dressing themselves, some difficulty walking and some difficulty concentrating and they still wouldn't be considered disabled, which seems pretty wrong.
To me, having looked at both the article and the linked study, one of the major problems is that the WG-SS doesn't include a question about running errands or similar.
It does, the last question is about running errands.
posted by ssg at 12:00 PM on November 17, 2023 [1 favorite]
To me, having looked at both the article and the linked study, one of the major problems is that the WG-SS doesn't include a question about running errands or similar.
It does, the last question is about running errands.
posted by ssg at 12:00 PM on November 17, 2023 [1 favorite]
ohhh this are you really disabled? nonsense is 100% intended* to reduce access to care for people affected by long covid
*if carelessness is indistinguishable from malice, I'm not giving the benefit of the doubt any more
posted by The demon that lives in the air at 12:07 PM on November 17, 2023 [34 favorites]
*if carelessness is indistinguishable from malice, I'm not giving the benefit of the doubt any more
posted by The demon that lives in the air at 12:07 PM on November 17, 2023 [34 favorites]
How many people should be considered disabled but are utterly blocked from meaningful help by deliberately designed policies of cruelty?
posted by Jacen at 12:08 PM on November 17, 2023 [24 favorites]
posted by Jacen at 12:08 PM on November 17, 2023 [24 favorites]
"You don't meet the government criterion for being disabled, so GET BACK TO WORK."
posted by deusdiabolus at 12:34 PM on November 17, 2023 [13 favorites]
posted by deusdiabolus at 12:34 PM on November 17, 2023 [13 favorites]
Granular scales that offer a lot of nuance are great for one-to-one interactions between a medical provider and a patient, since you can track subtle change (and hopefully improvement) over time.
For public policy? It's the stupidest thing on earth. "Why look at this scale, it goes from 0 to 5...but look how much budget we'd save if we set the cut-off at 2 rather than 3!" Like, you can't tell me that a policy-maker would look at the number under "some difficulty" and read that as "not enough difficulty to care about."
And note, we're not talking about the WGSS Enhanced, which has some mental health-specific questions--just the six-question version which will leave an awful lot of mentally ill people out of the data.
posted by mittens at 12:38 PM on November 17, 2023 [10 favorites]
For public policy? It's the stupidest thing on earth. "Why look at this scale, it goes from 0 to 5...but look how much budget we'd save if we set the cut-off at 2 rather than 3!" Like, you can't tell me that a policy-maker would look at the number under "some difficulty" and read that as "not enough difficulty to care about."
And note, we're not talking about the WGSS Enhanced, which has some mental health-specific questions--just the six-question version which will leave an awful lot of mentally ill people out of the data.
posted by mittens at 12:38 PM on November 17, 2023 [10 favorites]
yeah this is the same broken logic that interprets someone rating a uber/instacart/deliverator with anything less than 5 stars = abysmal service
posted by The demon that lives in the air at 1:19 PM on November 17, 2023 [2 favorites]
posted by The demon that lives in the air at 1:19 PM on November 17, 2023 [2 favorites]
Where are y'all finding the actual list of questions? Can you post them in the comments? I'm struggling to find them in the links for some reason.
posted by cnidaria at 2:11 PM on November 17, 2023 [2 favorites]
posted by cnidaria at 2:11 PM on November 17, 2023 [2 favorites]
VISION
VIS_SS [Do/Does] [you/he/she] have difficulty seeing, even if wearing glasses? Would you
say… [Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
HEARING
HEAR_SS [Do/Does] [you/he/she] have difficulty hearing, even if using a hearing aid(s)? Would
you say… [Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
MOBILITY
MOB_SS [Do/Does] [you/he/she] have difficulty walking or climbing steps? Would you say…
[Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
COGNITION (REMEMBERING)
COG_SS [Do/does] [you/he/she] have difficulty remembering or concentrating? Would you say…
[Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
SELF-CARE
SC_SS [Do/does] [you/he/she] have difficulty with self-care, such as washing all over or
dressing? Would you say… [Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
COMMUNICATION
COM_SS Using [your/his/her] usual language, [do/does] [you/he/she] have difficulty
communicating, for example understanding or being understood? Would you say…
[Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
posted by Jacen at 2:14 PM on November 17, 2023 [2 favorites]
VIS_SS [Do/Does] [you/he/she] have difficulty seeing, even if wearing glasses? Would you
say… [Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
HEARING
HEAR_SS [Do/Does] [you/he/she] have difficulty hearing, even if using a hearing aid(s)? Would
you say… [Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
MOBILITY
MOB_SS [Do/Does] [you/he/she] have difficulty walking or climbing steps? Would you say…
[Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
COGNITION (REMEMBERING)
COG_SS [Do/does] [you/he/she] have difficulty remembering or concentrating? Would you say…
[Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
SELF-CARE
SC_SS [Do/does] [you/he/she] have difficulty with self-care, such as washing all over or
dressing? Would you say… [Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
COMMUNICATION
COM_SS Using [your/his/her] usual language, [do/does] [you/he/she] have difficulty
communicating, for example understanding or being understood? Would you say…
[Read response categories]
1. No difficulty
2. Some difficulty
3. A lot of difficulty
4. Cannot do at all
posted by Jacen at 2:14 PM on November 17, 2023 [2 favorites]
And the census version:
Is this person deaf or does he/she have
serious difficulty hearing?
Yes
No
b. Is this person blind or does he/she have
serious difficulty seeing even when wearing
glasses?
Yes
No
H Answer question 19a – c if this person is 5 years
old or over. Otherwise, SKIP to the questions for
Person 2 on page 19.
19 a. Because of a physical, mental, or emotional
condition, does this person have serious
difficulty concentrating, remembering, or
making decisions?
I
Yes
No
b. Does this person have serious difficulty
walking or climbing stairs?
Yes
No
c. Does this person have difficulty dressing or
bathing?
Yes
No
Because of a physical, mental, or emotional
condition, does this person have difficulty doing
errands alone such as visiting a doctor’s office
or shopping?
Yes
No
posted by Jacen at 2:17 PM on November 17, 2023 [3 favorites]
Is this person deaf or does he/she have
serious difficulty hearing?
Yes
No
b. Is this person blind or does he/she have
serious difficulty seeing even when wearing
glasses?
Yes
No
H Answer question 19a – c if this person is 5 years
old or over. Otherwise, SKIP to the questions for
Person 2 on page 19.
19 a. Because of a physical, mental, or emotional
condition, does this person have serious
difficulty concentrating, remembering, or
making decisions?
I
Yes
No
b. Does this person have serious difficulty
walking or climbing stairs?
Yes
No
c. Does this person have difficulty dressing or
bathing?
Yes
No
Because of a physical, mental, or emotional
condition, does this person have difficulty doing
errands alone such as visiting a doctor’s office
or shopping?
Yes
No
posted by Jacen at 2:17 PM on November 17, 2023 [3 favorites]
The distance between "I am a person who is disabled and has difficulty with parts of life and might need some assistance or accommodation or financial support" and "I am officially a person who is disabled etc etc" can sometimes be measured in light years.
posted by hippybear at 2:21 PM on November 17, 2023 [17 favorites]
posted by hippybear at 2:21 PM on November 17, 2023 [17 favorites]
"Many state and federal programs rely on ACS data when allocating funding, and the data are used to evaluate whether disabled people are being given equal opportunities when it comes to things like housing, education, and health care. But the ACS is also a vital resource for researchers. “It certainly has the ability to drown out a lot of better designed sources of disability data,” says Jaime Seltzer, a disability activist and researcher at Stanford University who uses the data for her own work on chronic fatigue syndrome. In the wake of the COVID-19 pandemic, Seltzer says many are also using the data for research on Long Covid."
Hence the change-up, I think. Also, check out the differences in the ACS questionnaires sent to the states and sent to Puerto Rico.
posted by Iris Gambol at 2:30 PM on November 17, 2023 [2 favorites]
Hence the change-up, I think. Also, check out the differences in the ACS questionnaires sent to the states and sent to Puerto Rico.
posted by Iris Gambol at 2:30 PM on November 17, 2023 [2 favorites]
It's not exactly easy or comfortable for some folks to answer those questions. Myself, I can hear and see just fine. All the rest, my answer is unfortunately, yes.
posted by Goofyy at 2:33 PM on November 17, 2023 [1 favorite]
posted by Goofyy at 2:33 PM on November 17, 2023 [1 favorite]
So.... if I don't have "much difficulty walking" because I wear a $10,000 hybrid prosthetic-orthotic device on my leg that requires me to get the device tuned up periodically with a long visit to the clinic (most people have to mail theirs in because there's only one clinic in the world that makes these...), and requires me to buy two pairs of shoes because I wear two different sizes, and get one altered so my hips will be even, and do extra PT, etc etc huge time/money investment -- I'm not disabled?
Also absolutely nothing comprehensive about mental health, or digestive disabilities like celiac and Crohn's and UC (other than if they overlap with memory). I hate these questions.
posted by cnidaria at 2:34 PM on November 17, 2023 [21 favorites]
Also absolutely nothing comprehensive about mental health, or digestive disabilities like celiac and Crohn's and UC (other than if they overlap with memory). I hate these questions.
posted by cnidaria at 2:34 PM on November 17, 2023 [21 favorites]
The definition of disability that people keep giving me lately is, is what you have impairing your ability to live your life?
posted by jenfullmoon at 3:19 PM on November 17, 2023 [1 favorite]
posted by jenfullmoon at 3:19 PM on November 17, 2023 [1 favorite]
This is a survey sent to households, and having secure housing significant factor in the "'continuum' of disability" noted in the article. Switching to the WG-SS questions would reduce the ACS’s current (& too low) "14% of the population" estimate. Moreover, from the study in the FPP link: "The ACS-6 and the WG-SS performed especially poorly in capturing respondents with psychiatric disabilities or chronic health conditions."
posted by Iris Gambol at 3:44 PM on November 17, 2023 [5 favorites]
posted by Iris Gambol at 3:44 PM on November 17, 2023 [5 favorites]
In my experience as a science-adjacent person, I've found scientists of all kinds to be frustratingly thick when it comes to rhetoric and the difference between precision in scientific discourse (essential to understanding and progress) and precision in public statements or the application of science (sometimes extremely misleading or obfuscating.)
It's situations like this where I really see the old, "we do the science, you do the policy" divide to be basically destructive.
posted by Playdoughnails at 4:29 PM on November 17, 2023 [8 favorites]
It's situations like this where I really see the old, "we do the science, you do the policy" divide to be basically destructive.
posted by Playdoughnails at 4:29 PM on November 17, 2023 [8 favorites]
So.... if I don't have "much difficulty walking" because I wear a $10,000 hybrid prosthetic-orthotic device
I suppose you could answer that way. It doesn't seem to be in the spirit of the question though.
posted by Tell Me No Lies at 6:48 PM on November 17, 2023 [1 favorite]
I suppose you could answer that way. It doesn't seem to be in the spirit of the question though.
posted by Tell Me No Lies at 6:48 PM on November 17, 2023 [1 favorite]
> 1. No difficulty
> 2. Some difficulty
> 3. A lot of difficulty
> 4. Cannot do at all
Yeah, anyone who has "some" difficulty seeing, hearing, walking, remembering or thinking, caring for self, and/or communicating is disabled. Perhaps fairly mildly disabled, but still.
And someone who has "some difficulty" with ALL of those things is likely pretty significantly disabled. Just for example, that reminds me of a number of elderly people I know who are just barely able to function (mostly) independently, but would be quite unable to hold down an ordinary 40-hour a week job plus maintain a household.
So those people are now to be classified as not disabled at all?
OK.
posted by flug at 6:54 PM on November 17, 2023 [2 favorites]
> 2. Some difficulty
> 3. A lot of difficulty
> 4. Cannot do at all
Yeah, anyone who has "some" difficulty seeing, hearing, walking, remembering or thinking, caring for self, and/or communicating is disabled. Perhaps fairly mildly disabled, but still.
And someone who has "some difficulty" with ALL of those things is likely pretty significantly disabled. Just for example, that reminds me of a number of elderly people I know who are just barely able to function (mostly) independently, but would be quite unable to hold down an ordinary 40-hour a week job plus maintain a household.
So those people are now to be classified as not disabled at all?
OK.
posted by flug at 6:54 PM on November 17, 2023 [2 favorites]
I think for me, inextricably intertwined with disability is the significant amount of time/energy/money required to deal with/managing/mitigating the disability. This is what I call the "disability tax".
Like how my exo-leg that I wear requires so much adaptation and extra work/expenses -- remembering to bring knee sleeves if I'm wearing leggings to bike commute in the cold and I'm going to change into pants at work, remembering to bring a shoe horn everywhere I go so I can put my shoes on again if I take them off, not being able to take my dirty shoes off in people's homes (or taking them off but then not being able to walk without severe pain/instability), getting my pants altered, spending insane amounts of time trying to find shoes deep enough to fit the device without crushing my feet, buying two pairs of shoes for every one pair I need since I wear two different sizes, getting the shoes altered, figuring out how to get custom prototype sports equipment made so I can participate in certain sports, going to regular prosthetics appointments for the rest of my life to get things adjusted and maintained, worrying about if saltwater exposure will affect the non-marine-grade hardware even though my prosthetist thinks it won't and my leg will break somewhere remote and I'll be stranded, etc etc etc.
And how I used to have to bring all of my own cooking supplies traveling because I couldn't eat out anywhere because of being celiac and getting extremely sick from even a tiny amount of cross-contact (this is only mitigated somewhat now because of an experimental treatment that may or may not keep working). Nobody else could cook safely for me in their kitchen unless it was dedicated gluten free, so even when I was bed-bound with a severe injury, my community could not figure out how to do a meal train for me.
And how a person might be able to move freely and independently using a wheelchair, but then they have to pay for a much more expensive apartment that's wheelchair accessible. Or how my friends who are wheelchair users have had their custom chairs -- necessary for them to be mobile and independent, and costing tens of thousands of dollars -- completely smashed and destroyed by airlines, and have had to fight tooth and nail for dubious amounts of reimbursement while using dangerous loaner chairs while the airlines try to claim the chair was "already damaged".
There are lots of other examples I can think of from my life or other people's lives, but hopefully this gives the gist of how disabilities require onerous amounts of time, energy, and money, in addition to any other ideas we have about impairment or accessibility.
posted by cnidaria at 8:00 PM on November 17, 2023 [21 favorites]
Like how my exo-leg that I wear requires so much adaptation and extra work/expenses -- remembering to bring knee sleeves if I'm wearing leggings to bike commute in the cold and I'm going to change into pants at work, remembering to bring a shoe horn everywhere I go so I can put my shoes on again if I take them off, not being able to take my dirty shoes off in people's homes (or taking them off but then not being able to walk without severe pain/instability), getting my pants altered, spending insane amounts of time trying to find shoes deep enough to fit the device without crushing my feet, buying two pairs of shoes for every one pair I need since I wear two different sizes, getting the shoes altered, figuring out how to get custom prototype sports equipment made so I can participate in certain sports, going to regular prosthetics appointments for the rest of my life to get things adjusted and maintained, worrying about if saltwater exposure will affect the non-marine-grade hardware even though my prosthetist thinks it won't and my leg will break somewhere remote and I'll be stranded, etc etc etc.
And how I used to have to bring all of my own cooking supplies traveling because I couldn't eat out anywhere because of being celiac and getting extremely sick from even a tiny amount of cross-contact (this is only mitigated somewhat now because of an experimental treatment that may or may not keep working). Nobody else could cook safely for me in their kitchen unless it was dedicated gluten free, so even when I was bed-bound with a severe injury, my community could not figure out how to do a meal train for me.
And how a person might be able to move freely and independently using a wheelchair, but then they have to pay for a much more expensive apartment that's wheelchair accessible. Or how my friends who are wheelchair users have had their custom chairs -- necessary for them to be mobile and independent, and costing tens of thousands of dollars -- completely smashed and destroyed by airlines, and have had to fight tooth and nail for dubious amounts of reimbursement while using dangerous loaner chairs while the airlines try to claim the chair was "already damaged".
There are lots of other examples I can think of from my life or other people's lives, but hopefully this gives the gist of how disabilities require onerous amounts of time, energy, and money, in addition to any other ideas we have about impairment or accessibility.
posted by cnidaria at 8:00 PM on November 17, 2023 [21 favorites]
So those people are now to be classified as not disabled at all?
OK.
Interested persons are invited to submit written comments [on or before December 19, 2023] by email toposted by aniola at 8:29 PM on November 17, 2023 [3 favorites]
acso.pra@census.gov.
Please reference the American Community Survey and the Puerto Rico Community Survey in the subject line of your comments. You may also submit comments [on or before December 19, 2023], identified by Docket Number USBC–2023–0009, to the Federal e-Rulemaking Portal:
https://www.regulations.gov.
The survey also doesn't cover autism.
posted by NotLost at 11:32 PM on November 17, 2023 [4 favorites]
posted by NotLost at 11:32 PM on November 17, 2023 [4 favorites]
Do people actually believe the government cares what people say during the comment period? Americans love just world theory, and there’s always an effort to root out the “unworthy” disabled, who are seen as dead weight on the system at best, and malingerers and grifters at worst. This is purposely designed to make our lives harder, particularly those of us with mental illness. I don’t believe for one second that this is good faith. Source: I have lived with multiple (mostly invisible) disabilities for years, and I used to work helping people apply for disability.
posted by vim876 at 7:40 AM on November 19, 2023 [2 favorites]
posted by vim876 at 7:40 AM on November 19, 2023 [2 favorites]
The survey also doesn't cover autism.
Is that a disability or not?
posted by Selena777 at 8:01 AM on November 19, 2023
Is that a disability or not?
posted by Selena777 at 8:01 AM on November 19, 2023
Vim876, *yes*.
It's not perfect, but personal comments to counteract those of highly paid lobbyists are critical to getting shit improved.
You can (and should!) also tell them you want them to look at XYZ that is related but unaddressed. No guarantee they'll be able to do anything with it but they *have to respond to all comments in writing*. That is the value of throwing additional things in there. I have friends who did this and they and their bosses took it very seriously.
They're well-intentioned nerds who are at the mercy of a commenting system that is flooded with professional analysts and commenters employed by industry - lobbying organizations, professional organizations, industry associations etc.... but none of those people are writing in the public's interest. No one pays for that - for example, that's why our health care incentives are so industry friendly. Public health and people in the public interest can't afford to spend days reading detailed policy language when volumes of relevsnt policy come out daily, deciding what their time is best spent on arguing for, and deciding what a better regulation would say (in detail!) so it avoids unintended consequences, writing it up and submitting it. Health care outsources to industry groups and then all members submit very similar letters based on that analysis and suggested modifications.
It's maddening if you care about social good.
To folks interested in us fed commenting - how do you keep up with what's out there? I know the fed register will send emails for keyword searches but the volume is overwhelming. I am very interested in this, and there's got to be a better way than relying on word of mouth, random email lists, and MF, which is what I do now.
posted by esoteric things at 6:26 PM on November 19, 2023 [1 favorite]
It's not perfect, but personal comments to counteract those of highly paid lobbyists are critical to getting shit improved.
You can (and should!) also tell them you want them to look at XYZ that is related but unaddressed. No guarantee they'll be able to do anything with it but they *have to respond to all comments in writing*. That is the value of throwing additional things in there. I have friends who did this and they and their bosses took it very seriously.
They're well-intentioned nerds who are at the mercy of a commenting system that is flooded with professional analysts and commenters employed by industry - lobbying organizations, professional organizations, industry associations etc.... but none of those people are writing in the public's interest. No one pays for that - for example, that's why our health care incentives are so industry friendly. Public health and people in the public interest can't afford to spend days reading detailed policy language when volumes of relevsnt policy come out daily, deciding what their time is best spent on arguing for, and deciding what a better regulation would say (in detail!) so it avoids unintended consequences, writing it up and submitting it. Health care outsources to industry groups and then all members submit very similar letters based on that analysis and suggested modifications.
It's maddening if you care about social good.
To folks interested in us fed commenting - how do you keep up with what's out there? I know the fed register will send emails for keyword searches but the volume is overwhelming. I am very interested in this, and there's got to be a better way than relying on word of mouth, random email lists, and MF, which is what I do now.
posted by esoteric things at 6:26 PM on November 19, 2023 [1 favorite]
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posted by McBearclaw at 10:47 AM on November 17, 2023