Do You Know What You're Signing At Check-In?
Plus: New study identifies differences in age of autism diagnosis; North Carolina parents dread Medicaid cuts; Maltese showing of Unseen documentary highlights new caregiver grants
As “frequent fliers” to health clinics, medical mamas sign a lot of paperwork. At many clinics, there is simply an electronic signature pad at the check in counter. The documents we sign aren’t even visible at all.
I realized how flawed this system was more than a year ago when my son’s clinic asked me to sign something related to the No Surprises Act. I signed it like I normally did, sight-unseen. Then the front desk clerk asked me to sign another document related to the No Surprises Act. That seemed odd.
She explained that the second document was acknowledging the receipt of information about what the No Surprises Act was. (I didn’t actually receive any information, as there was no way to view the document.) So what was the first document?, I asked the clerk. She didn’t know so I asked her to print the documents off so I could read them and sign with an actual pen.
It turned out that the first document I’d signed was a waiver. Before I even knew it, I had waived my right to not receive a surprise bill.
The No Surprises Act, passed by Congress, began Jan. 1, 2022. It was a rare bipartisan health consumer protection law, passed despite our era of extreme political division. It ensures that clinics give an accurate estimate of the charge so patients don’t receive a surprise back bill in the mail. The fact that my clinic was just having everyone who walked through the door automatically sign away their newfound right to be told how much their visit was going to cost infuriated me.
It is hard enough to get helpful laws passed. But even the best protections can all be undone by a piece of paperwork that we are too busy to read.
Ever since then, I have insisted on reading the paperwork they have me sign at check in. It is often a minor drama because they never know how their printer works or how to proceed with the check in before it is signed. Because of how rare my request seems to be, it has become very obvious that the vast majority of health consumers have no meaningful idea what they are signing their name to. Ironically, they are often signing to acknowledge receipt of information that they did not actually receive.
So perhaps it will surprise you to learn what exactly is in the Notice of Privacy Practices that you have very likely signed at every health clinic. These notices are all similar because their contents are mandated by the Health Insurance Portability and Accountability Act of 1996 — a misunderstood law that (like the No Surprises Act) was also intended to be a health consumer protection bill.
HIPAA applies to health care providers, insurance companies and third-party health contractors. It was intended to give patients control over their “personal health information,” like chart notes and data. However, there are some loopholes that feel pretty significant in our current political environment.
Allow me to digress. Between my home and the clinics I visit weekly with my children lies what President Donald Trump called a “war zone.” The Immigration and Customs Enforcement building in Portland has been in the national news in the last few weeks because it is now the site of National Guard and federal officer deployment over protests that have been happening since June.
I drive by the building all the time. I am also friends with an attorney who is representing a client who lives in the low-income housing high-rise building across the street. I believe two things:
Living near, working in or being detained at Portland’s ICE facility has not been pleasant the last few months and may even have been dangerous.
AND it is not a “war zone.” The activity there does not rise to the level of national scrutiny it is receiving. It is a single city block with some conflict and protests.
It is in this context — a stone’s throw away from this location that has become a national flashpoint for differing views of reality — that I crossed out the following provisions of the Notice of Privacy Practices before a recent appointment. It was a symbolic gesture. It doesn’t change what information can be shared, but it’s my way of refusing to endorse it. Our personal health information can still be shared without our consent under these loopholes of HIPAA law.
Oregon Health and Science University’s notice reads as follows:
[…]We may use or disclose your health information without your permission in the following circumstances, subject to all applicable legal requirements and limitations:
[…]11. Military. To appropriate domestic or foreign military authority to assure proper execution of a military mission, if required criteria are met.
12. National Security; Intelligence Activities; Protective Service. To federal officials for intelligence, counterintelligence, and other national security activities authorized by law, including activities related to the protection of the President, other authorized persons or foreign heads of state, or related to the conduct of special investigations. […]
Most of us have signed an acknowledgment like this countless times. But did we really understand what we were agreeing to?
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From The News & Observer (North Carolina): “Families of medically fragile children fear NC’s Medicaid cuts will drive away home nurses | Opinion”
To make up for a shortfall in funding from the legislature, North Carolina is cutting its Medicaid payments to health care providers by 3% to 10%, but for Julie Crockett the potential loss is much bigger.
It could mean losing the nursing care that sustains the profoundly disabled 8-year-old girl she regards as her granddaughter.
Sophia, the granddaughter of Crockett’s boyfriend, has TBCK syndrome, an extremely rare genetic disorder that causes weak muscles, brittle bones and seizures. She depends on a tracheostomy, a ventilator and a feeding tube and, unable to speak, she communicates using an eye-gaze device. Crockett and Sophia’s mother care for her, but they need the help of home health care nurses paid for by Medicaid. The government health insurance plan has approved Sophia for 16 hours of nursing care a day. But if home health care nurses have their pay cut, they may move on to better paying hospital jobs.
[…]Behind the Medicaid cuts is a dispute about how to provide additional Medicaid funding. State lawmakers agree that more funding is needed, but the state House and Senate disagree about what else should be in legislation that would provide the funding. The impasse may be broken when the legislature goes back into session Oct. 20.
In the meantime, home care for the disabled remains in jeopardy.[…]
• From Disability Scoop: “Why So Many Kids With Autism Are Diagnosed At Older Ages”
Despite broad efforts in recent years to identify children with autism early, many continue to go undiagnosed for years. New research suggests that genetics may explain why.
Kids who receive an autism label earlier — generally before the age of 6 — have distinct genetic and developmental profiles compared to those who are diagnosed at older ages, according to findings published this month in the journal Nature.
[…]Children diagnosed with autism earlier in life were more likely to have behavioral challenges and issues with social interaction from a young age, the study found.
By contrast, those diagnosed later often exhibited social and behavioral difficulties during adolescence, the findings indicated. They were also at increased risk for depression and other mental health conditions.
[…]“The term ‘autism’ likely describes multiple conditions,” said Varun Warrier from the University of Cambridge, a senior author of the study. “Understanding how the features of autism emerge not just in early childhood but later in childhood and adolescence could help us (recognize), diagnose and support autistic people of all ages.”
• From TVM News: “Documentary on parents and caregivers of disabled persons on MCVS Funds”
This conference and screening of the documentary Unseen: How We’re Failing Parent Caregivers and Why It Matters took place in Malta, a small island nation in the Mediterranean Sea in between Italy and Libya. Read my 2022 interview with the makers of Unseen here.
Behind every disabled person there are parents and a number of persons who care for them but whose work often goes unnoticed.
This is the theme of a documentary and a commentary by the volunteer group National Parents’ Society of Persons with Disability (NPSPD), which highlighted some points on those who care for handicapped children.
[…]Minister Julia Farrugia explained how the documentary ‘The Unseen’ reflects the reality of many parents and caregivers the challenges which are sometimes invisible but are an integral part of everyday life.
She continued [saying that] it is therefore that as a Government we have to assure we provide concrete and practical help. We have introduced a scheme of reimbursement for therapy for those who pay for it. We have also started a system of annual tax credits for the benefit of families. This not only means Government is listening to parents but also that it is acting on behalf of social justice and relieving financial pressure.
She continued to explain the criteria of benefits has been increased so that persons with disabilities are recognised and given due benefits.
The first year concentrated on adults and this year will include children under 16 and emphasised on the important step where the Carer’s Grant is given to parents with disabled children.[…]
The next installment in Lenore Eklund’s Where is the Manual for This?! comic will be back next week.
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