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:
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.
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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
