Links, April 28, 2023

Today’s disability newsletter probably isn’t interesting to most people, so let me add some links.

Who else is worried about the Biden 2024 ticket? Moi.

Shopping: I am a huge sucker for travel clothes. I also bought some nice linen pants from the Gap.

Friday’s newsletter is going to be one long education rant. Research and practice have never been so divided!

Dr. Fauci now thinks that schools were closed for too long. “Ya think?!!!!!!! He lost me.

This weekend, I’m going to the ABAA Book Fair on Saturday. Later, I’ll meet up with Ian and Steve for an Ian-friendly dinner. On Sunday, I’m meeting a friend for lunch at a great Italian restaurant in the West Village — Palma, Cornelia Street.

Have you made your summer vacation plans yet? Where are you going?

30 thoughts on “Links, April 28, 2023

  1. I really appreciated the disability newsletter — I’ve vaguely known about tiers and money and also noticed that descriptions seem to obfuscate (at the web sites, etc). As you said, you didn’t know what the end of the rainbow (or, shall we say the march through the tedious mud and rain) would provide, and, apparently a rainbow of non-negligible money to support your kid, in your case.

    When you read the descriptions and see all the work, it seems like it could be like applying for merit scholarships to decrease the 320K year of private college work (that is, even 10K isn’t much, if you’ll then have to pay 280K).


    1. I suppose it is similar to a merit scholarship, but it’s the opposite. The more disabled that you are the more money that the state allocates for the person. For adults with severe behavioral, medical, and cognitive issues, who need full time institutionalization, the state puts aside $435,000 per year. I believe that a lot of the money comes from Medicaid, but I’m not sure.

      The money is really in lieu of services from the state, the state gives money to the parent (controlled by a private 3rd party coordinator) to find care for that person. It’s vouchers, really.

      To come back to your college analogy, imagine that there were no colleges, and the state gave you money to hire an English teacher and a private group that did fraternity stuff and another group that took groups of young people to Europe for a few months. That’s how it’s for the disabled population. Few comprehensive services. Parents have to figure it out on their own.

      I went to a service fair last weekend, and there were tons of private small businesses who were all competing for my state money. It’s like socialized libertarianism. So weird.

      One of things that is never talked about, which I’ll only bring up in the comment section, is the fact that parents can use that budge to pay themselves. Fair enough, I suppose. If I have to coordinate all this stuff, rather than the state doing it, they should pay me. But nobody wants the regular public to know that this is happening. I have no idea how much money I can earn from this set up.


      1. This is how Medicaid works: the state puts in a $1 and the feds put in a $1. Unless it’s a Red-taker state, then the Feds’ match is larger. That’s one of the ways poor Red states get well-to-do Blue states’ money.

        When the Medicaid recipient dies, the state gets to be paid back from whatever is in the estate (unless it is sheltered in a trust). The state is keeping track of every penny. If they cover a medication co-pay for $4.17, they make a note, $4.17.

        The feds set general rules for Medicaid Waivers but within those parameters, states can fashion Medicaid Waivers however they want.

        For one example, Ohio’s Waiver program serves children, New Jersey’s does not. My son has been getting Waiver services through various nonprofits since he was in elementary school.


      2. In Ohio, the parents who can pay themselves with Medicaid Waiver money have children who need round-the-clock care. The parents are filling in for homemaker/personal care and/or nursing staff. Things could be different in New Jersey though.

        As sn alternative, you could look into using part of Ian’s SSI for “rent,” and use that money as you wish (some parents put that money aside for their child’s future needs, usually in an ABLE account).

        To charge Ian “rent” you will have to ask Social Security’s permission. They will ask for documentation on your housing costs (mortgage, utilities, etc.), and set the rent amount accordingly. Around here, it tends to be about $400 (yeah, that’s about half of the total benefit).

        I believe the third party provider set-up is mainly a financial control, to prevent families from embezzling the money.

        One annoyance for me has been providers who are private pay — thinking here particularly of a local SLP who runs wonderful social skills groups. He doesn’t want to bother with the hoops involved with becoming a Medicaid provider so we couldn’t use the Waiver; instead we used the Social Security benefit.

        No, it never becomes less complicated. You just get used to it.


      3. I don’t understand Medicaid yet. We qualified automatically after getting SSI and needed it to start the paperwork for the state. But I don’t really understand how it will help Ian if he is on our health insurance plan.


      4. Can he just stay on your plan, or only until he is 26? I don’t know if the rules are different in your family’s circumstances.

        We’ve been thinking about this health insurance issue if our graduating kiddo does not relocate to an area where our HMO has offices. While she was in school, we were required to pay for the school’s health insurance because our plan would only pay for emergencies in her location.

        But, though I might be wrong, I think part of what OhioMom was saying is that some of the services provided are through the medicaid program and thus, medicaid eligibility is required (so, medicaid providing services other than what we generally think of as health care). But, I don’t know. I do think there’s a lot of what happens in these complex systems that the average person/taxpayer/etc doesn’t understand at all. The danger, when this lack of understanding is the result of political obfuscation in the hopes that warning bells about (say, bon-bon eating mothers being paid to do what they should do for love) is that people don’t know how the services they (or ones they care about) are being paid for and through which government programs. I.e. the (potentially apocryphal) seniors with signs that say “get your government hands off my medicare”.


      5. Yes, Medicaid is required. He has it, but we’re not using it directly. Maybe the state will use it to pay for some of his stuff. There’s also a way to get funding directly from Medicaid, but I don’t understand how it works. I think Ian wouldn’t qualify for much.


  2. “..worried about the Biden 2024 ticket? ..” More angry than worried. I think I am going to go into the voting booth and face a choice between two aged grifters, neither competent to face up to our foreign adversaries. Trump is more disagreeable and more energetic, the cheese has more clearly slipped off Biden’s cracker – but it’s absolute irresponsibility on the part of each party to face us with these two.


    1. There’s a line about how there are four different combinations:


      Smart/energetic is the best possible, stupid/energetic is the worst possible. I think Biden is mostly stupid/lazy, whereas Trump is some sort of combination of stupid/lazy and stupid/energetic–it’s hard to pin down. I think the issue is that Trump’s energy is primarily verbal, whereas he doesn’t actually DO much. He used to do this thing where he’d complain about some issue…with no regard for the fact that he himself was president. But that’s been a popular approach lately among major politicians…Complain about some issue, without admitting that you’ve been in Washington DC for the last 40+ years…


      1. My judgment on Biden is not entirely partisan.

        Obama is said to have said of Biden, never underestimate Joe’s ability to **** things up. You’ll notice that it took him a loooong time to give Joe Biden his endorsement.


  3. There are exactly three issues most important to me: Social Security, Medicaid and Medicare*, because those are the funding sources that will sustain my disabled adult son through his life span (i.e., especially after his dad and I shuffle off this mortal coil).

    Everyone here can make whatever comments they like about Biden and other Democrats but it’s unarguable which Presidential candidate and which party is committed to these vital safety net programs and which ones have long stated their antipathy to them. To vote for that party is to risk the future of every disabled person.

    * At the risk of boring everyone, Disabled adults on SSI are moved to SSDI – Disabled Adult Child upon the first of their parents to start collecting their Social Security Retirement Benefits. And after two years on being on DAC, the disabled person starts being covered by Medicare, with Medicaid moving from primary to payer of last resort.


  4. I do really appreciate the transparency offered by Laura & Ohio Mom’s descriptions. I was thinking about why and I realized that it is a antidote to my general frustration against whisper networks, especially when it comes to children, but also for advice in general. Networks (Social capital) are sometimes about who you know, purely, but often they are about how information gets passed along. I always appreciate it when people who are connected make the information more generally available to those who are less connected.

    I did know that some states allow caregivers to pay themselves for the work they do (with different limits on work, as OhioMom says), even when they are related to the recipient. These payments do help, I presume, but, I also think they are part of the plan for the underfunding of the work. Paying someone who loves the recipient of the money is one way to get more caregiving work than the money could buy otherwise.

    With an understanding of your absolute right to share only what you wish and what is appropriate for your family, I would be very interested in hearing how your budget plays out, and in particular, if the budget, allocated through vouchers, works. OhioMom said, as I understand, that in Ohio some of the supports came through this kind of account (and, I certainly don’t understand the systems well enough to be precise) and I am interested in understanding whether “voucher” systems in the disability end up being a form of underfunding, or if they end up being deployed effectively.


    1. Does the voucher system work? It is hard to describe it all in a comment.

      The system is set up to prevent fraud and conflicts of interest.

      For example, Son’s County caseworker suggested he might benefit from an Uber account. She suggested an amount (he has a transportation budget of about $800 dollar a month which I think is too much but this is the first year and we are feeling this out) and then she did the paperwork so the Medicaid money at the state level would go to a vendor which puts it in Son’s Uber account monthly. As I understand it, this vendor coordinates Uber accounts statewide.

      If anyone is going to abscond with the money, it won’t be the caseworker or my family. I assume the vendor gets audited, it has to be less work for the state to audit only one organization.

      Other services are provided by local organizations. For example, Son is not interested but there is a fabulous studio art organization in town for disabled adults. Some local artists saw a need and founded this nonprofit organization.

      Again, your county caseworker sets up the payment, the money goes from Columbus to the art organization.

      The decision about how to spend the Medicaid Waiver money is made by the individual with their caseworker at an annual meeting that is reminiscent of an IEP meeting. The document that is produced is called “My plan” (at least that is how it works in Ohio).

      Are these services underfunded, of course. Is there skimming, there has to be. The outfit which is administering the Uber account isn’t doing it for free.

      On a another note, until recently, our County DD Board ran two day programs for the (underserved) very disabled population, one day program at one end of town, the other at the other end of town.

      Someone in Columbus declared it was a conflict of interest for the County Board to directly provide services so the day programs were somehow transferred to a private, for profit organization (based in Pennsylvania with centers in ren states).

      Are they making money off of this, more than the County did, yes, they are not a charity, they are in it for the money. Did this all happen because of directions sent down from Medicaid in D.C., or a kickback to someone in Columbus, or something else, got me.

      In contrast to Medicaid Waiver funding, Social Security benefits are deposited directly in a bank account and spent as the individual/their payee sees fit. I used to have to report how I was spending the money annually but it was changed to periodic reporting and no one has told me when/if to expect to have to report.

      But now that Son is on SSDI, I don’t think there are any reporting requirements. As payee, I could probably embezzle from this account, I don’t see how anyone would ever know. Needless to say, I’m not going to.


  5. Also, a shout out on the Ohio connection — As I’ve mentioned before I grew up in Ohio and as a milestone reunion is in process, classmates have been sharing their stories. One of my classmates is currently working at Ohio Center for Autism and Low Incidence (OCALI). Her son, who has autism, is a self taught musician and she also manages his band. She looks exactly like she did at 18. Fascinating work and interesting to see the “red” state version of services and outreach.


    1. OCALI dies great work. They have a fabulous conference every fall on just about every aspect of autism you can think of, and now that it is online, I can go, so to speak.


  6. Ian’s Medicaid might pay for all the things his primary coverage (through his dad’s job) won’t, like deductibles and co-pays. That is how we used Son’s Medicaid but he had traditional (fee-for-service) Medicaid through his Medicaid Waiver.

    If Son hadn’t had that Waiver, and received his Medicaid only as part of his SSI, in Ohio he would have been forced into a managed care plan. I have no idea if or how the managed care plan and Dad’s insurance would have fit together.

    Just a daily reminder of the penalties we pay for living in the only developed country without government-sponsored health care.

    Have you tried contacting the NJ Arc? They usually have staff who understand government benefits systems and how to leverage them. The Virginia Arc held my friend’s hand through the whole benefit sign-up process for her son.


  7. I’ve attended some the ARC’s webinars and talked with them. Not hugely impressed with them. The county employs a social worker to help parents with the paperwork; she helped me a lot.

    I talked to a friend this weekend, who said that she had a friend with a higher needs son. She said that he had a budget of $60,000 and that the state just gave her the money during COVID, because services shutdown.

    $60K! We didn’t get anything from schools or the gov’t. Is this why we didn’t get help? Because parents with older and more involved kids got money, so they didn’t complain loudly?


    1. “$60K! We didn’t get anything from schools or the gov’t. Is this why we didn’t get help? Because parents with older and more involved kids got money, so they didn’t complain loudly?”

      I hadn’t thought about individual settlements and how they might have affected the “only one student being served” stat that I found horrifying about my school district. The stat was always one student being served in school, not any money payments that might have occured.

      And, this is a danger of individual settlements and solutions, that they undermine potential systemic solutions. Especially exacerbated if they are “secret” and include non-disclosure agreements.

      But, as a parent, the moral imperative is to make sure your kid is OK, though clearly there are tough ethical quandaries when there’s zero sum math.

      (I am wary of friend of friend reports, though, both in amount and child’s needs).


    2. Yeah, local ARCs seem to vary widely in what they are able to provide. The one in Northern Virginia sat down with my friend and mapped out for her exactly what she needed to do to get her son benefits, and also how to keep records correctly once the benefits started. Meanwhile, the Cincinnati Arc went out of business years ago. It’s hard out there for small nonprofits.

      Why did the higher needs individual get so much money during Covid? I am sure there are proper terms for what I’m going to describe but I don’t know them.

      There are government benefits that are available to everyone who qualifies: there is no limit to the number of people who can get SNAP. If the economy tanks and more people are desperate and meet the requirements, they can all get SNAP (assuming they apply and jump through the hoops).

      Then there are government benefits with set budgets and as a result, not everyone can be served. Section 8 housing vouchers are like that.

      There are only so many to go around. Even though you can be eligible (and apply), you can wait your whole life to get a housing voucher and never get one.

      Disability-specific programs on the state level tend to be like Section 8 vouchers. There is only so much money and that’s it. Individuals with greater needs tend to get served first, and to receive greater benefits. Individuals (including lower need ones) who started receiving benefits years ago don’t get kicked off.

      So most of the money is already “claimed.” There are openings when people die or move out of state, freeing up the money that was allocated for them, or (once on a blue moon) when the state legislature increases funding.

      Ohio Son got his Waiver after Ohio increased funding, I’m going to say, about 20 years ago. Considering our Statehouse is now a gerrymandered den of rabid Republicans, I don’t expect another big increase during my lifetime.

      News flash: we live in a country that is pretty heartless. You are not exempt from that.


  8. So, the coronation? will you watch in live time with your fascinator & tea? How about coronation quiche? And the “Homage of the people”?

    ““I swear that I will pay true allegiance to Your Majesty, and to your heirs and successors according to law. So help me God.”

    (Though no one is asking Americans to participate!)

    I have the cookbook with the original coronation chicken (for QE2), by Constance Spry (who was also the flower arranger that shifted England to the more natural styles that were used today.

    I woke up to watch Princess Diana’s wedding (with my mom and sisters, but in the Eastern time zone). I’ve also watched a stream of QE2’s coronation, a fascinating historical moment, 70 years ago. I’m intrigued to see the comparison to this coronation, but, it’ll start at 2 AM, too early to wake up and too late to stay up! I’ll have to wait for the streams.


    1. I’m fascinated with the monarchy because it’s all so over the top helmed by some very weird, flawed individuals. Hereditary rule is a DNA crap shoot. Sure, democracy was responsible for the election of Trump, but mostly it works out.


      1. Hmm. During the reign of QE2 the presidents of the US have been: Truman (just), Eisenhower, Kennedy, Johnson, Nixon, Ford, Carter, Reagan, Bush, Clinton, Bush, Obama, Trump, Biden.

        Now, I can’t really comment on the first batch – I wasn’t around. But from the 80s when I started to be politically aware, really the only one I would think of as ‘great’ (or with elements of greatness) is Obama. The others were basically cogs in the political machine of ‘Buggins’ turn’ in clawing their way to the top of their respective political parties. Most were elderly, all had political debts to pay, none had any pretence of independence, all had one eye on their re-election prospects.

        Democracy may be the best method for governing with consent of the governed (or at least of 50% of those who bothered to vote) – but it’s questionable whether it provides the best stability for the actual role of Head of State.

        Truthfully, if it wasn’t for the ‘at least he’s not Trump’ feeling, would any Democrat *really* be proud of Biden as their leader on the world stage?


      2. Truthfully, if it wasn’t for the ‘at least he’s not Trump’ feeling, would any Democrat *really* be proud of Biden as their leader on the world stage?

        I’m not sure what “proud” means but I am fairly pleased with the competence of the Biden administration in managing our diplomatic affairs. He gets along with our allies and doesn’t suck up to autocrats. His administration seems to have done a reasonably good job, and perhaps as well as could be done, with regard to both the business with Russia and managing our relationships with Japan and Korea and Australia in the Pacific. For instance.

        As far as I can tell, people not liking Biden appear to come down to three things: (1) Inflation, which has more to do with the pandemic and Trump administration policies as anything he has done. The sitting president gets the blame but this is one where fingers could legitimately be pointed elsewhere. (2) Antipathy on the part of Trumpy moron sore losers, who just can’t be pleased whatever he does. (3) A resentful drumbeat from the cynical horserace media, who have the sads because, like Obama’s, his presidency is relatively no-drama, scandal free, and devoid of circuses that entertain them.

        So, yeah, I’m fine with the Biden presidency and four more years of this wouldn’t phase me in the slightest. All the bad things coming out of politics right now are from the right and there isn’t much any Democratic president can do about that.


    2. I am fascinated by the over the top spectacle that inspires many of our modern spectacles and the connection to history, even as the enterprise in the modern age feels like historical reenactment. As I was watching clips of the 1953 coronation of Elizabeth I was reminded of the Storica Regata in Venice. We stumbled on without knowing having known about it before we planned our trip. So, we walked to the Piazza San Marco and found people dressed in 15th century costume. The Storica is a reenactment/celebration of the return of the Catarina Camaro from Cyprus (whose birth is depicted in a painting in the Isabel Gardner Museum — she appears to have been born in a ballroom with a bevy of well dressed nobility and passed hors d’oeuvre).

      The coronation, certainly this one for Charles, seems like a historical reenactment, but like the storica regata, the setting is real. The mods and the person (who has no real power but has resources to put on a fancy event) make it feel like an expansive reenactment. But the family tree and the stone of scone and the controversy over diamonds that have been worn by kings and princes across south asia and Westminster Abby and the children (Lady Jane Grey, one of the Edwards) who died because the role mattered remind me of the history.

      I’m sad that there won’t be robes and evening dresses, but we never got to see them on the runway the way one can at the Met Gala, so I’ll be satisfied with the flashbacks to 1953 & drama of the event.


    3. One of our commenters on a local political blog was frothing at the mouth over the ‘creepy’ pledge of allegiance from the commons.

      It’s replacing the individual oaths which were traditional from the Lords (senior nobility) in the coronation.

      In the past, this was significant. The local warlords were making a public affirmation that the king was their boss.

      These days, the House of Lords is pretty much irrelevant in the governance of the UK (not entirely, but not exactly a political powerhouse needing to be reigned in)

      I think this pledge is an acknowledgement of the much greater political power that the commons (ordinary people) has in the UK, today. And an attempt to link the monarchy directly with that power.

      It is, in effect, a personal restatement of the oath that your MP (Member of Parliament) takes to the monarch, on behalf of his/her constituents, every time Parliament sits. It’s just that you get (the opportunity) to say it personally, rather than by proxy.

      Of course, it’s entirely optional. And rabid republicans (they do exist in the Commonwealth), are perfectly free to go do something else rather than watching, reading about, or commenting on, the Coronation.

      I don’t think I’ll be saying it. But then I don’t really go for public affirmations.


      1. Polls are saying something like 70% of folks saying they won’t say it; It’ll be interesting to see how it plays out in practice. Will people got caught up in the ceremony and say it? Will there be an audible impression as was hoped for?

        The history of documented coronations, from 1066, of William the Conqueror, in Westminster Abbey to the 2023 coronation is a fascinating span of human change with the enduring structure of the abbey.

        It will be interesting to see the transition from the QE2, who served 70 years, through a lot of change to the big change to Charles 3. I’ve been reading about Charles’s Poundbury village, organic farming, desire to be “defender of faith” (rather than “defender of the faith”), his energy ventures (including the wind farms on the seabeds that belong to the King).


  9. Fun UsefulCharts video about the coronation with history added (not too long, but there are advertisements): “”


  10. Ok, just learned today that Charles III is a self-taught watercolor painter, one whose work was chosen (anonymously) for a major show in 1987, and that he continues to improve in technique. I am impressed — he’s much better than I am and I would buy the works if they appeared on Etsy.

    (and, I think I like Charles’s work better than Churchills, which are of similar styles)


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