Readers and Tweeters Defend the Rights of Adults With Disabilities

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Letters to the Editor is a periodic characteristic. We welcome all feedback and can publish a range. We edit for size and readability and require full names.

Sufferers as Educators

I learn, with curiosity, your article concerning the difficulties that adults with Down syndrome face within the medical world (“Folks With Down Syndrome Are Residing Longer, however the Well being System Nonetheless Treats Many as Children,” April 17). I’d add that this type of factor is an issue for adults with developmental disabilities usually. As an autistic grownup, I can undoubtedly relate.

I’ve really discovered myself typically having to teach medical doctors about my situation. It’s as if they don’t anticipate to see developmental disabilities amongst their sufferers. Whereas I’m able to advocate for myself, I’m very involved about those that can’t. One other essential level that your article makes is the necessity for medical professionals to handle developmentally disabled adults straight. They need to additionally communicate to them as fellow adults and never as kids. Whereas we might have a developmental incapacity, we’re additionally effectively conscious of the truth that we’re adults.

Lastly, your article mentions the problem of getting assist for individuals over age 30. It is a downside not just for these with Down syndrome however for individuals with developmental disabilities usually. I’m 58 and was recognized with autism at age 37. Whereas I’ve benefited vastly from the assistance I have acquired, I’ve additionally discovered it very irritating to be turned away from potential avenues of self-betterment simply due to after I was born. It’s by no means too late!

Thanks very a lot for this well timed article about adults with developmental disabilities.

— Elizabeth Avery, Weymouth, Massachusetts

Our well being system is not ready to look after adults with developmental disabilities — Folks with Down Syndrome Are Residing Longer, however the Well being System Nonetheless Treats Many as Children https://t.co/vjHxtM6JrK through @kffhealthnews

— Ellen Andrews (@cthealthnotes) April 17, 2023

— Ellen Andrews, Hamden, Connecticut

I needed to take a minute and thanks for the article that was additionally printed on CNN about individuals who have Down syndrome who’re dwelling longer with out the medical neighborhood maintaining. My aunt has Downs and will probably be 71 this June!

She has endured so many ups and downs from the medical neighborhood since she was born within the Fifties to the place we at the moment are. Listening to tales of the previous, there are occasions I simply can’t consider she’s nonetheless alive. My mother and father and different aunt assist look after her in a rural space in Wisconsin and it’s been extraordinarily troublesome for everybody as she has gotten older. I despatched this text on they usually felt heard, for the primary time.

I respect you for bringing consideration to this not solely as a niece who loves her aunt, but in addition as a particular training trainer!

— Jennifer Pearce, Excelsior, Minnesota

Reminder for everybody to verify the names in your medical payments, this occurs rather a lot. I simply had my son’s ER facility invoice are available in with my title because the affected person. Straightforward dispute for us, cleaned after a single letter. https://t.co/Sr2rdI6MFQ

— pj (@pjsantoro) March 31, 2023

— PJ Santoro, Los Angeles

When Is an Insurer Not an Insurer?

I write to handle what could also be an inaccuracy in your March 29 Invoice of the Month report, “ER’s Error Lands a 4-12 months-Outdated in Collections (For Care He Didn’t Obtain),” which maybe is just not too materials to your protection (though it might be if the dispute persevered). However I believe it’s essential for KFF Well being Information to symbolize it appropriately since your newsroom and KFF are extremely regarded sources of knowledge round well being care fee.

You repeatedly referred to UnitedHealthcare because the affected person’s “insurer.” To be an insurer, the entity, UnitedHealthcare, should assume the monetary threat of a declare, and on condition that HCA Healthcare is the employer, that’s extremely unlikely. Most likely HCA is self-funded, straight assuming all monetary threat for its worker profit plan. UnitedHealthcare is probably going only a supplier of administrative companies to the employer and its coated workers, in what’s also known as an “ASO” association, that means administrative companies solely.

Why does this matter? Many causes, however first, UHC and related organizations like individuals to think about them because the insurer as a result of it enhances model power in increasing their very worthwhile position as an middleman in well being care transactions. Within the “C suite,” nonetheless, well being plan executives and traders are completely satisfied to keep away from the monetary uncertainty of well being care utilization, as an alternative having fun with the predictability of administrative earnings, together with by means of the supply of Rx advantages. UHC is actually a really giant ASO, as is Cigna, CVS, Elevance (previously Anthem), and lots of the bigger Blue Cross and Blue Defend entities. These firms get to entry the shoppers’ funds to fund well being care in advancing their market-share enterprise goals.

Second, the opposite two key events in most three-way medical transactions, sufferers and suppliers, are fairly often blind to this, which muddies the problems that come up in disputed claims, and broader well being care coverage. Self-funded advantages are usually not analogous to insurance coverage in lots of essential respects, and using the phrase “insurance coverage” interchangeably has led to confusion and unintended coverage penalties. KFF Well being Information is effectively positioned to right this key misunderstanding. Your work on affected person billing dilemmas is a good place to handle this. Within the article about Sara McLin (if I’ve appropriately surmised that UHC is the administrator and never the insurer), UHC may merely be recognized because the administrator. Most readers and NPR listeners would grasp that delicate however essential distinction.

KFF offers a wonderful, clear image of economic employment-based well being care profit financing within the annual “Employer Well being Advantages Survey.” As famous on this 12 months’s report, 65% of workers are members in self-funded plans. This quantity continues to extend.

My dive into this considerably esoteric nomenclature subject is perhaps considered as a bit obsessive. In my 35-plus-year profession in well being care fee, nonetheless, I’ve repeatedly seen how this misunderstanding has fueled battle on the affected person/supplier stage and resulted in misguided public coverage. I hope you and your readers discover these feedback of some use.

— Marc Marion, Oklahoma Metropolis

We’d have all handled one thing like this. Irritating as each a doc and affected person. Extra ironic since household employed by HCA. https://t.co/xqrQjqBoUY

— Philip Chen (@DrPhil_ENT) April 8, 2023

— Philip Chen, San Antonio

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