“… 87 percent of autism families never go on vacation.” National Geographic explores ideas for taking autistic kids on vacation to national parks. They are also looking for input from autism parents about making public spaces more autism-friendly.
Younger children will need decades to recover from two years of remote education and childcare closures. [headline fixed] Similar piece in the New Republic. I’m glad that I’m not the only one horrified that 150,000 children are missing from NYC public schools.
TIL — A disabled adult with no income only gets $573 per month or less than $7,000 per year from the government. It takes hours and hours to complete all the paperwork, none of which can be done by people with severe disabilities. (more on this later)
Supply chain Christmas. Are you shopping early?
My cousin, Charlene, had a debilitating illness a few years back. She would sleep for 20 hours a day. She was totally exhausted all the time. But the doctor couldn’t find anything wrong with her. She’s not alone. Megan McArdle talks about her experiences with chronic illness. Ross Douthat has a book about it.
COOKING: I made a crazy soup last night with tons of vegetables, spicy sausage, and cannellini beans. This kale soup is similar, but mine was better.
PICTURE: I sold $250 worth of vintage medical reference books yesterday.
16 thoughts on “SL 856”
I have been following the chronic illness lit for a long time because it is another example yet of how fought so many questions have become.
MM’s chronic issues had a pretty clear cause that, when discovered, was resolvable (low blood pressure, resolved by changing blood pressure meds).
The Wash Post recent “Medical Mystery” column profiled a woman searched for an explanation for her chronic condition for a very long time, focusing on long Lyme, then, when finally checked properly, discovered Graves disease, treated with a thyroidectomy which resolved her symptoms. In that article, her focus on Lyme might have delayed her eventual diagnosis (which I was diagnosing thyroid issues right away :-). https://www.washingtonpost.com/health/medical-mysteries/medical-mystery-weight-loss-jittery/2021/10/15/3020e3ce-0109-11ec-a664-4f6de3e17ff0_story.html
Both are examples of failures in our medical system. When we talk of Medical Mysteries, we often presume that “Zebras” were missed in favor of horses and dismissing the condition (as on television). But in both these cases, doctors missed horses, commonly occurring conditions. There are many potential causes, but one I worry about is expecting highly-capable patients to guide their own care (sometimes because they seem to desire it, but sometimes because it’s just easier to let them).
I hadn’t realized SSI was so much worse than before. It was close to $450 a month in Ohio back when I was working for the state. Which was over 25 years ago.
I think Laura is reporting the reduced amount for someone who has access to subsidized housing & food. It’s $794 in 2021 for an adult living independently. In WA state, individuals are also eligible for SNAP benefits & Medicare (apparently in Alabama, SSI & Medicare must be applied for separately).
I’m shocked at how complicated it all is every time I try to understand the benefits. An example complication? If a bank account exceeds $2000, even by one dollar, an individual becomes ineligible (and, if this happen 5 years ago, the individual is ineligible for the past five years).
Medicaid, not Medicare
There’s a whole set of knowledge about a “spend down” to get of formerly middle class status into Medicaid.
Yes. When I give any money to friends on disability it’s either cash or a visa gift card. I thought the limit was not on money in the but on assets period.
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I have no idea whether or not Ian will ever be able to support himself in the future. He certainly can’t right now. So, I’m getting him in the system to get support from the government.
I cannot believe how horrible this system is. I am going to start documenting what I learn on Fridays. I am trying to nail down some interviews, too, but I am having big problems getting people to agree to go on the record with this stuff. I talked with a social worker employed by the state last week. She gave me an hour’s worth of help. But she won’t talk to me as a reporter. I have no idea why.
You might consider talking to NAMI. They were thinking about the same issues from the same perspective.
Laura wrote, “But she won’t talk to me as a reporter. I have no idea why.”
Because talking to an unethical or careless reporter can wreck your life.
On second thought, it doesn’t even need to be the reporter’s fault.
All you need is for your name to be in print or on video saying something that makes enough people mad, and your life will become miserable.
Especially for individuals with more complex medical needs, the Medicaid is a big part of the need.
I talked with a social worker employed by the state last week. She gave me an hour’s worth of help. But she won’t talk to me as a reporter. I have no idea why.
Really? No idea? As others have mentioned, not being able to assess how she might be portrayed in your work and being worried about coming off looking bad is one interpretation. As is the idea that she might face retaliation from her employer.
But there is a less paranoid interpretation of why people are disinclined to speak to reporters about their jobs. Namely, unless they have a specific axe to grind and want to use the reporter to do so, most employees refrain from doing so out of professionalism. My own employer prefers to speak with one voice to the media and, even when I disagree with them, I respect that wholeheartedly. I would not speak to a reporter about my work because there is an implicit social contract not to and, unless I was specifically trying to make life hard for them or actually expose some malfeasance, there is absolutely no incentive or reason for me to do so.
But this is unusual for me. 99% of people agree to chat with me.
Jay said, “But there is a less paranoid interpretation of why people are disinclined to speak to reporters about their jobs.”
My husband occasionally gets contacted for a news interview, and his current method is to take questions via email and write back by email.
I’m sure it’s lacking in a certain freshness and spontaneity, but written responses allow him to put some thought into it and say exactly what he means, they’re harder to misunderstand, harder to misquote, and he has an automatic record of the exchange.
Was the social worker talking with you as part of her job? or as a favor? I can certainly imagine that talking with a parent as the teacher or doctor of their child would be completely different than talking with them as a reporter.
I do wonder who fills out this paperwork for people for the 4% or so of the population who receive SSI benefits. Some may fill it out for themselves (40% have physical or other disabilities that may not preclude doing the work themselves), but what about all the others?
A number of legal aid organizations try to help (in WA, I’m familiar with Northwest Justice Project & Columbia Legal Services & Disability Rights WA). They are investing in making videos and forms and documents available in ways that I can read an access (but, though not a lawyer, I’m a PhD, so who else does this work for? just now, I almost threw up my hands and clicked the “unhelpful” button because I didn’t’ realize I had to click on the icon in order to download the ABLE account information document).
Reminds me a bit of on line learning — people trying their best to come up with less expensive solutions when people really need labor intensive one on one help. Also referred to in Laura’s tweet link to the article about providing work services for people with autism. Autism job boards aren’t going to fix the issues.
Yes, I would never write up a discussion that I had with someone, when I had not clearly identified myself as a reporter. When I talked with her, it was as a parent. While I might write up that information as background, I would never identify her by name as the source of that information.
It is totally impossible for a disabled person to fill out any of this paperwork. It is nearly impossible for an upper middle class, middle aged, over-educated women with flexible work responsibilities. I am spending my evenings watching webinars and getting additional help from professionals. This process could take months. The social worker did say that disabled people only get these benefits with the help of parents.
If Ian didn’t have me, he would be dead in the street. Or in prison.
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