Missteps by the Michigan Department of Health and Human Services in “unwinding” Medicaid eligibility

At the end of February 2024, I was visiting my son’s group home, where I was given a letter addressed to Ian from the Michigan Department of Health and Human Services (MDHHS) and our local Washtenaw Department of DHS. It was the result of a dreaded Medicaid eligibility review by the State.

Ian is 39 years old and has profound and lifelong intellectual and developmental disabilities (IDD).

The letter, a “Health Care Coverage Determination Notice”, started out on a cheerful note giving hope of continued eligibility for at least some health care coverage:

As of 3/1/24, Ian is eligible for “…Ongoing (Plan First - PFFP) (Limited Coverage)”.

It turns out that this small sliver of help offered by the State was limited to family planning! This is indeed very bad news for someone who, for all his adult life, has had medical services covered by Medicare, Medicaid, and various state programs to help people with extraordinary and expensive needs. Never once has he asked for or needed family planning services. Beyond family planning, Ian was told that he could try to get insurance through Healthy Michigan, Michigan’s Medicaid expansion plan, or hope that he gets employment soon with great health insurance.

The form that this information was transmitted on was five pages long, much of it irrelevant and in code. I am usually good at translating agency-speak into English, but this was beyond my capabilities.

The group home supervisor had recently tried calling MDHHS about Ian’s benefits and was told that she needed to put Ian on the phone so that Ian could give permission for the employee to speak to the group home supervisor. The problem is that Ian does not talk and is unable to communicate in any specific way. We know when he is happy, sad, distressed, joyful or somewhere in between, but we have no idea if he knows what “giving permission” means. That is why my husband and I have been appointed as Ian’s plenary co-guardians through the Washtenaw County Probate Court.

Apparently, the unravelling of Ian’s health insurance was triggered by a failure to fill out paperwork in a timely manner and appeal a decision that was made some time ago that stopped payments to him for Supplemental Security Income (SSI). Ian’s brother Danny, who was also profoundly disabled, died in October of 2022. After that Ian’s social security benefits, based on his share of his father’s retirement benefits, increased to the point where he was no longer eligible for SSI. In Michigan, a person who qualifies for SSI is automatically eligible for Medicaid.

I was notified of Ian’s change in SSI benefits two weeks after Danny died, but I did not remember receiving the notice. There it was, however, in my “Ian Files”. I did not realize that this might affect Ian’s Medicaid, but I did notice that his SSI check was no longer appearing in his monthly bank statements. The notice stated that I would need to appeal to the state if it was planning to drop his Medicaid coverage. This was during the COVID-19 emergency when federal rules protected people on Medicaid from losing Medicaid benefits.

[If you are not confused yet, you should be. This is just one of those glitches that families experience all the time when dealing with agencies that provide services to their disabled family member. It is one reason you will find family members, especially parents, who develop their own type of Caregiver Savant Syndrome, who can rattle off lists of symptoms, medications, and specialists who treat whatever it is their kid has, or quote from law and court cases that pertain to their child’s rights, or list agencies they have complained to and who within those agencies are helpful and who are not.]

Re-determination of Medicaid eligibility is not just a Michigan problem, but a countrywide mess. This is from an article, "Worse Than People Can Imagine: Medicaid ‘Unwinding’ Breeds Chaos in States" from KFF Health News regarding eligibility reviews of Medicaid beneficiaries after the COVID-19 emergency protections were rescinded in Spring of 2023: 

“Seven months into what was predicted to be the biggest upheaval in the 58-year history of the government health insurance program for people with low incomes and disabilities, states have reviewed the eligibility of more than 28 million people and terminated coverage for over 10 million of them. Millions more are expected to lose Medicaid in the coming months.”

To continue with the Ian saga:

I have been to enough conferences about disability rights, Medicaid, and the availability of services to have remembered that if someone receives an “adverse” decision to change or drop services, that decision can be appealed. The agencies involved have to continue providing benefits until a decision is made at an administrative appeals hearing, as long as the decision is appealed immediately.

I decided to appeal, but first, I needed to call wheelchair seating at the University of Michigan. They were on the brink of delivering a new custom-made wheelchair to Ian that had been in the works for over 7 months and I was not about to let a lapse in Medicaid benefits get in the way of the chair’s delivery. They said they could have the chair done by the next day.

Then I whipped together an appeal to the the Michigan DHHS with a plea to reconsider their decision to drop Ian’s Medicaid coverage, with the first point being that he would never be able to afford medical coverage or other services with his Social Security benefits as his only source of income. I threw in a description of Ian that would have made the severity of Ian’s disabilities obvious to anyone over the age of three who had ever met him in person. Furthermore, his status as a person with a disability that qualified him for benefits in the first place had not changed. I’m sorry if this sounds like bragging, but after 47 years in the disability world, I am really good at this and I do think it ultimately helped in resolving the issue.

I faxed the appeal to the our local DHHS office and we waited. I got another Health Care Coverage Determination Notice again telling me that Ian was being offered inadequate coverage even though I should have been informed about what I knew already - that he would continue with full coverage at least until a hearing could be held over my appeal.

Then I heard that sometimes it was faster to get Medicaid reinstated by just reapplying for the benefit. So on 4/5/24 my husband and I trudged off to the local DHHS office to see if we could pick up paper work to reapply for benefits.

As we entered the door to the DHS office, I noticed immediately that there was a security guard at the entrance. A good thing, I thought, considering how angry people get when they are being put through this form of light torture. I appreciated that the first gatekeeper was good at controlling the crowd. When it was finally my turn, I explained that we wanted to pick up some paperwork to fill out so that we could reapply for benefits for our son. Apparently, one does not just pick up paperwork without a reason and an appointment, so I explained that our boy is profoundly disabled and has been since birth. We just wanted the State to recognize this and continue with full coverage of his medical health insurance.

The gatekeeper asked if we could bring Ian in so that Ian could nod his head if he agreed to give us permission to talk to the gatekeeper. I said no, that is not a reliable way to get Ian’s permission, but I mentioned that I had also brought copies of our guardianship papers. With that, he said he would try to get us in to talk to a caseworker. 

About 15 minutes later, we met with a very nice lady who admitted that this was an unusual situation. She had to go off to talk to her supervisor, who then needed to consult with a medical supervisor, to straighten things out. They decided that what they needed to do was to get Ian re-instated as a “Disabled Adult Child” through the Federal Social Security Administration (SSA). The good news was that the caseworker copied our guardianship papers and entered them into Ian’s file. If all goes right, Ian will not be asked again to give permission for us to talk to employees at MDHHS, something he is not able to do. This also meant that the MDHHS would send correspondence to both us as Ian’s guardians and to Ian at his group home.

In the meantime, our local DHHS office sent a notice of a pre-Appeals Hearing Conference for 3/11/24 to try to resolve the hearing issues. Unfortunately, it was a phone conference, and even though the group home had brought Ian to the local DHHS office, he stayed in the parking lot. Had anyone bothered to lay eyes on Ian before they decided to reduce his medical coverage, it would have been obvious that this was probably a mistake. The Appeals Hearing itself was scheduled for 4/25/24.

On 3/19/24, the Federal SSA sent a letter to me (as Ian’s Representative Payee) stating that because Michigan was no longer paying for Ian’s Medicare premiums, $174.70 would be deducted from his monthly SSA check.

On 4/5/24, MDHHS sent another “Health Care Coverage Determination Notice” stating that Ian is eligible for “03/01/2024-Ongoing (Full Coverage)”, but I was not sure what this meant exactly. 

On 4/12/24, the Federal SSA sent me another letter, stating that the state of Michigan will indeed pay Ian's monthly Medicare premium, bringing his monthly SSA benefits back up to $1,277.00 per month.

Finally, after speaking to his local caseworker for DHHS, she explained that yes, the State is paying for full medical coverage for our dear boy. I was then convinced that the issue of health insurance coverage was resolved.

I then asked the State to “Dismiss the Request for Hearing…”, which involved filling out another form and an exchange of paperwork and a phone call with the State.

Conclusions:

If you have guardianship for a severely disabled family member, use it to make sure that you are in on important decisions regarding benefits and care. The movement to discredit people who are guardians and disparage guardianship as a violation of individual civil rights, doesn’t make sense for individuals who lack the ability to exercise their rights on their own behalf.

Don’t give up and assume that you are doomed to accept the loss of benefits because someone says so in a letter.

As far as the State is concerned, I think that anytime a state or local agency considers taking benefits away from a person with severe disabilities, bells and flashing lights should go off on the computers of state and local agency employees that says, “Reconsider before you do anything rash.” The first review by agencies should  require that they contact someone who has laid eyes on the beneficiary and knows something about them. Think about all the wasted time and energy spent on Ian, only to come back around to where they started in the first place - assuring needed health care benefits to someone who should have been eligible all along.

Medicaid, Medicare, SSI, SSA, and the intricacies of their interface between the Federal and State agencies is complicated. I understand enough to pull Ian though this crisis, but there are large gaps in my knowledge. Sorry, but you will have to get in touch with another Caregiver Savant who is better equipped to help. Who knows? Sooner or later, that may be you.

And one more thing…as I was leaving Ian’s group home last week, I discovered that the State has sent a letter to another resident, stating that she was losing benefits because she was no longer disabled. That must have been a miraculous recovery, because she sure looked to me to be as disabled as she was before she received that letter.

********
See also:

5 Things to Know When Your Child with Disabilities Turns 18
October 26, 2023, by Margaret A. Graham, Esq., an attorney affiliated with Special Needs Alliance

DISABLED ADULT CHILD BENEFITS, posted April 17, 2023 by a lawfirm in Florida

Medicaid "Unwinding" Breeds Chaos in States

We have had our own personal version of "unwinding chaos" since the end of February, 2024. Our son Ian, who has profound, lifelong, disabilities and lives in a group home in Ypsilanti, Michigan, was found ineligible for full Medicaid healthcare benefits that he had been receiving for almost 20 years. Before I go into what happened and how the problem has finally been resolved (knock-on-wood), here is an article from Kaiser Family Foundation (KFF Health News) with a broader picture of what is happening across the country:

‘Worse Than People Can Imagine’: Medicaid ‘Unwinding’ Breeds Chaos in States
By Phil Galewitz and Katheryn Houghton and Brett Kelman and Samantha Liss, November 2, 2023

[This story also ran on USA Today. It can be republished for free.]

The parents of a disabled man in Tennessee who had been on Medicaid for three decades fought with the state this summer to keep him enrolled as he lay dying from pneumonia in a hospital.

Seven months into what was predicted to be the biggest upheaval in the 58-year history of the government health insurance program for people with low incomes and disabilities, states have reviewed the eligibility of more than 28 million people and terminated coverage for over 10 million of them. Millions more are expected to lose Medicaid in the coming months.

The unprecedented enrollment drop comes after federal protections ended this spring [2023] that had prohibited states from removing people from Medicaid during the three pandemic years. Since March 2020, enrollment in Medicaid and the related Children’s Health Insurance Program had surged by more than 22 million to reach 94 million people. The process of reviewing all recipients’ eligibility has been anything but smooth for many Medicaid enrollees. Some are losing coverage without understanding why. Some are struggling to prove they’re still eligible. Recipients and patient advocates say Medicaid officials sent mandatory renewal forms to outdated addresses, miscalculated income levels, and offered clumsy translations of the documents. Attempting to process the cases of tens of millions of people at the same time also has exacerbated long-standing weaknesses in the bureaucratic system. Some suspect particular states have used the confusing system to discourage enrollment.

“It’s not just bad, but worse than people can imagine,” said Camille Richoux, health policy director for the nonprofit Arkansas Advocates for Children and Families. “This unwinding has not been about determining who is eligible by all possible means, but how we can kick people off by all possible means.” 

To be sure, some of the Medicaid recipients who signed on to the program when the U.S. unemployment rate soared amid covid-19 lockdowns have since gotten health insurance through new jobs as unemployment dropped back to pre-pandemic lows.

And some of the disenrolled are signing up for Affordable Care Act marketplace plans. Centene CEO Sarah London, for example, told investors on Oct. 24 that the health care giant expected as many as 2.4 million of its 15 million Medicaid managed care members to lose coverage from the unwinding, but more than 1 million customers had joined its exchange plans since the same time last year.

Still, it’s anyone’s guess how many former Medicaid beneficiaries remain uninsured. States don’t track what happens to everyone after they’re disenrolled. And the final tallies likely won’t be known until 2025, after the unwinding finishes by next summer and federal officials survey Americans’ insurance status.

Without Medicaid, Patients Miss Appointments

Trish Chastain, 35, of Springfield, Missouri, said her Medicaid coverage is scheduled to expire at the end of the year. Though her children are still covered, she no longer qualifies because her income is too high at $22 an hour. Chastain’s employer, a rehab center, offers health insurance but her share of the premium would be $260 a month. “I can’t afford that with my monthly budget,” she said.

She said she did not know she might be eligible for a lower-cost plan on the Affordable Care Act marketplace. That still would mean new costs for her, though.
Gaps in coverage can jeopardize people’s access to health services or their financial security if they get medical bills for care they cannot postpone.

“Any type of care that's put off — whether it's asthma, whether it's autism, whether it's something as simple as an earache — can just get worse if you wait,” said Pam Shaw, a pediatrician in Kansas City, Kansas, who chairs the American Academy of Pediatrics’ state government affairs committee.

Doctors and representatives of community health centers around the country said they have seen an uptick in cancellations and no-shows among patients without coverage — including children. Nationwide, states have already disenrolled at least 1.8 million children in the 20 states that provide the data by age. Children typically qualify more easily than adults, so child advocates believe many kids are being wrongly terminated based on their parents’ being deemed no longer eligible. 

Meanwhile, enrollment in CHIP, which has higher income eligibility levels than Medicaid, has shown only a tiny increase.

Kids accounted for varying shares of those disenrolled in each state, ranging from 68% in Texas to 16% in Massachusetts, according to KFF. In September, President Joe Biden’s administration said most states were conducting eligibility checks incorrectly and inappropriately disenrolling eligible children or household members. It ordered states to reinstate coverage for some 500,000 people.

Varying Timetables, Varying Rates of Disenrollment

Idaho, one of a few states that completed the unwind in six months, said it disenrolled 121,000 people of the 153,000 recipients it reviewed as of September because it suspected they were no longer eligible with the end of the public health emergency. Of those kicked off, about 13,600 signed up for private coverage on the state’s ACA marketplace, said Pat Kelly, executive director of Your Health Idaho, the state’s exchange. What happened to the rest, state officials say they don’t know.

California, by contrast, started terminating recipients only this summer and is automatically transferring coverage from Medicaid to marketplace plans for those eligible.

The Medicaid disenrollment rates of people reviewed so far vary dramatically by state, largely along a blue-red political divide, from a low of 10% in Illinois to a high of 65% in Texas.

“I feel like Illinois is doing everything in their power to ensure that as few people lose coverage as possible,” said Paula Campbell of the Illinois Primary Health Care Association, which represents dozens of community health centers.

Nationwide, about 71% of Medicaid enrollees terminated during the unwinding have been cut because of procedural issues, such as not responding to requests for information to verify their eligibility. 

It’s unclear how many are actually still eligible. State and local Medicaid officials say they have tried contacting enrollees in multiple ways — including through letters, phone calls, emails, and texts — to check their eligibility. Yet some Medicaid recipients lack consistent addresses or internet service, do not speak English, or are juggling more pressing needs.

“The unwinding effort continues to be very challenging and a significant lift for all states,” said Kate McEvoy, executive director of the National Association of Medicaid Directors.

‘People Are Not Getting Through

In many states, that has meant enrollees have faced long waits to get help with renewals. The worst phone waits were in Missouri, according to a KFF Health News review of letters the Centers for Medicare & Medicaid Services sent to states in August. In the letter to Missouri’s Medicaid program, CMS said it was concerned that the average wait time of 48 minutes and the 44% rate of Missourians abandoning those calls in May was “impeding equitable access” to assistance and patients’ ability to maintain coverage.

Some people are waiting on hold more than three hours, said Sunni Johnson, an enrollment worker at Affinia Healthcare, which runs community health centers in the St. Louis area. That’s a significant hurdle for a population in which many have limited cellphone minutes.

In Florida, which has removed over 730,000 people from the program since April, enrollees earlier this year were waiting almost 2½ hours on a Spanish-language call center, according to a report from UnidosUS, a civil rights advocacy group. The Spanish versions of the Medicaid application, renewal website, and other communications are also confusing, said Jared Nordlund, the Florida director for UnidosUS.

“They can barely get the Spanish translations right,” he said.

Miguel Nevarez, press secretary for Florida’s Department of Children and Families, which is managing the state’s Medicaid redetermination process, criticized complaints about poor translations and long waits for the Spanish-language call center as a “false narrative.” He said, “The data clearly shows Florida has executed a fair and effective plan for redeterminations.”

In California, similarly jammed phone lines, crowded and understaffed county offices, and trouble downloading renewal applications electronically are all “compounding people’s difficulty to renew” their Medicaid, said Skyler Rosellini, a senior attorney in the Los Angeles office of the National Health Law Program. “We do know, based on the cases we’re getting, that people are not getting through.”

Jasmine McClain, a 31-year-old medical assistant, said she tried everything before Montana ended Medicaid coverage for her kids, ages 3 and 5, in early October. She tried submitting paperwork online and over fax to prove they still qualified. She spent hours on hold with the state hotline. After her kids’ coverage ended, she went to a state public assistance office in Missoula but couldn’t get an appointment. One day in mid-October, roughly 30 people lined up outside the office starting as early as 6:40 a.m., before its doors opened.

After three weeks of her pleading for help while her kids were uninsured, the state restored her kids’ coverage. She said a supervisor told her the family’s paperwork submitted online wasn’t processed initially.

“The phone call system was a mess. Callbacks were a week out to even talk to somebody,” McClain said. “It just was just a lot of hurdles that I had to get through.”
Spokespeople for the Montana, Florida, and Missouri Medicaid programs all said their states had reduced call wait times.

Some Medicaid recipients are seeking help through the courts. In a 2020 class-action lawsuit against Tennessee that seeks to pause the Medicaid eligibility review, parents of recipients describe spending hours on the phone or online with the state Medicaid program, trying to ensure their children’s insurance coverage is not lost.

One of those parents, Donna Guyton, said in a court filing that Tennessee’s Medicaid program, called TennCare, sent a June letter revoking the coverage of her 37-year-old son, Patrick, who had been eligible for Medicaid because of disabilities since he was 6. As Guyton made calls and filed appeals to protect her son’s insurance, he was hospitalized with pneumonia, then spent weeks there before dying in late July.

“While Patrick was fighting for his life, TennCare was threatening to take away his health insurance coverage and the services he relied on,” she said in a court filing. “Though we should have been able to focus on Patrick’s care, our family was required to navigate a system that kept denying his eligibility and putting his health coverage at risk.” 

TennCare said in a court filing Patrick Guyton’s Medicaid coverage was never actually revoked — the termination letter was sent to his family because of an “error.

Phil Galewitz in Washington, D.C., wrote this article. Daniel Chang in Hollywood, Florida; Katheryn Houghton in Missoula, Montana; Brett Kelman in Nashville, Tennessee; Samantha Liss and Bram Sable-Smith in St. Louis; and Bernard J. Wolfson in Los Angeles contributed to this report.

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 — the independent source for health policy research, polling, and journalism.