Readers and Tweeters Defend the Rights of Adults With Disabilities

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

Patients as Educators

I read, with interest, your article about the difficulties that adults with Down syndrome face in the medical world (“People With Down Syndrome Are Living Longer, but the Health System Still Treats Many as Kids,” April 17). I might add that this kind of thing is a problem for adults with developmental disabilities in general. As an autistic adult, I can definitely relate.

I have actually found myself sometimes having to educate doctors about my condition. It is as though they do not expect to see developmental disabilities among their patients. While I am able to advocate for myself, I am very concerned about those who cannot. Another important point that your article makes is the need for medical professionals to address developmentally disabled adults directly. They should also speak to them as fellow adults and not as children. While we may have a developmental disability, we are also well aware of the fact that we are adults.

Lastly, your article mentions the difficulty of getting help for people over age 30. This is a problem not only for those with Down syndrome but for people with developmental disabilities in general. I am 58 and was diagnosed with autism at age 37. While I have benefited greatly from the help I have received, I have also found it very frustrating to be turned away from potential avenues of self-betterment just because of when I was born. It is never too late!

Thank you very much for this timely article about adults with developmental disabilities.

— Elizabeth Avery, Weymouth, Massachusetts

Our health system isn’t prepared to care for adults with developmental disabilities — People with Down Syndrome Are Living Longer, but the Health System Still Treats Many as Kids https://t.co/vjHxtM6JrK via @kffhealthnews

— Ellen Andrews (@cthealthnotes) April 17, 2023

— Ellen Andrews, Hamden, Connecticut

I wanted to take a minute and thank you for the article that was also published on CNN about people who have Down syndrome who are living longer without the medical community keeping up. My aunt has Downs and will be 71 this June!

She has endured so many ups and downs from the medical community since she was born in the 1950s to where we are now. Hearing stories of the past, there are times I just can’t believe she’s still alive. My parents and other aunt help care for her in a rural area in Wisconsin and it’s been extremely difficult for everyone as she has gotten older. I sent this article on and they felt heard, for the first time.

I appreciate you for bringing attention to this not only as a niece who loves her aunt, but also as a special education teacher!

— Jennifer Pearce, Excelsior, Minnesota

Reminder for everyone to check the names on your medical bills, this happens a lot. I just had my son’s ER facility bill come in with my name as the patient. Easy dispute for us, wiped clean 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 address what may be an inaccuracy in your March 29 Bill of the Month report, “ER’s Error Lands a 4-Year-Old in Collections (For Care He Didn’t Receive),” which perhaps is not too material to your coverage (although it could be if the dispute persisted). But I think it’s important for KFF Health News to represent it correctly since your newsroom and KFF are highly regarded sources of information around health care payment.

You repeatedly referred to UnitedHealthcare as the patient’s “insurer.” To be an insurer, an entity must assume the financial risk of a claim, and given that HCA Healthcare is the employer, that is highly likely. Most probably HCA is self-funded, directly assuming all financial risk for its employee benefit plan. UnitedHealthcare is likely just a provider of administrative services to the employer and its covered employees, in what is often referred to as an “ASO” arrangement, meaning administrative services only.

Why does this matter? Many reasons, but first, UHC and similar organizations like people to think of them as the insurer because it enhances brand strength in expanding their very profitable role as an intermediary in health care transactions. In the “C suite,” however, health plan executives and investors are happy to avoid the financial uncertainty of health care utilization, instead enjoying the predictability of administrative earnings, including through the delivery of Rx benefits. UHC is essentially a very large ASO, as is Cigna, CVS, Elevance (formerly Anthem), and many of the larger Blue Cross and Blue Shield entities. These companies get to access the clients’ finances to fund health care in advancing their market-share business objectives.

Second, the other two key parties in most three-way medical transactions, patients and providers, are very often ignorant of this, which muddies the issues that arise in disputed claims, and broader health care policy. Self-funded benefits are not analogous to insurance in many important respects, and the use of the word “insurance” interchangeably has led to confusion and unintended policy consequences. KFF Health News is well positioned to correct this key misunderstanding. Your work on patient billing dilemmas is a great place to address this. In the article about Sara McLin (if I have correctly surmised that UHC is the administrator and not the insurer), UHC could simply be identified as the administrator. Most readers and NPR listeners would grasp that subtle but important difference.

KFF provides an excellent, clear picture of commercial employment-based health care benefit financing in the annual “Employer Health Benefits Survey.” As noted in this year’s report, 65% of employees are participants in self-funded plans. This number continues to increase.

My dive into this somewhat esoteric nomenclature topic might be viewed as a bit obsessive. In my 35-plus-year career in health care payment, however, I have repeatedly seen how this misunderstanding has fueled conflict at the patient/provider level and resulted in misguided public policy. I hope you and your readers find these comments of some use.

— Marc Marion, Oklahoma City

We might have all dealt with something like this. Frustrating as both a doc and patient. More ironic since family employed by HCA. https://t.co/xqrQjqBoUY

— Philip Chen (@DrPhil_ENT) April 8, 2023

— Philip Chen, San Antonio

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.