By Kit Carver, SPECIAL TO THE ADVANCE
Editor’s Note: “Federal Medicaid Changes Could Put Hundreds of Thousands of Virginians at Risk of losing coverage.” That was the headline in Virginia Scope for a Sept. 23 article by Brandon Jarvis.
“The changes, required under federal law, will affect adults ages 19 to 64 enrolled through Medicaid expansion and include new work requirements, six-month eligibility renewals and tighter rules around retroactive coverage,” the article continues. “State officials said during a meeting with legislators on Wednesday that roughly 300,000 of 550,000 Virginians who used Medicaid expansion could be at risk.”
As everyone dealing with Medicaid knows—patients, their families, health care providers— even before the new requirements and restrictions, Medicaid eligibility and access to services have long been challenging. Here’s a chapter in one local family’s ongoing story.
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Our son Jake was injured 21 years ago in a motorcycle accident. As a result, he has a spinal cord injury at the level of Cervical spine 3-5. That means he has no normal function from the nipple line of the chest down. His arms are able to just move enough to control his power wheelchair. He activates the modes of the chair—lift, recline, or tilt—through switches in his headrest. He lives on his own in an apartment in our house.
Jake is able to stay there because of the amazing technology at his disposal for operating the computer, phone, lights, and locks. He also achieves this independence through Medicaid, and the tremendous assistance of the Medicaid waiver program. For 20+ years he has received 70 hours of in-home services a week from caretakers paid each day to come to his apartment.
They perform range-of-motion exercises for all his joints so they don’t freeze. They put him in his shower chair for all the bathroom activities you would expect. The bathroom activities can take 2-3 hours. They then dress him and prepare his first meal. They feed him. Throughout the day they will make the bed, clean the apartment, do the laundry, and go with him to the grocery store. When he needs his meds, the caretakers take them out of the dispenser and place them in Jake’s mouth. He can’t scratch his head or blow his nose without help. Because his diaphragm is compromised, Jake also requires assistance to cough. One person comes in the morning for six or so hours and another comes in the evening for four. Evening routines are a reverse of the mornings.
In August we received a letter from Jake’s provider stating that they had determined he no longer needed 70 hours a week—he only needed 58. We received this letter on the 19th and had until the 25—yes 5 days—to appeal this decision. We scrambled to gather the documentation necessary to file an appeal, including letters from his doctors stating the medical need for these services. It was amazing that we were able to get his doctors to forward us letters within 24 hours. Jake’s appeal went in with our letter and letters from three professionals. It was 7 pages long.
The government’s stated commitment is to help people with disabilities remain in the community. Nursing home care is the only other option for people like Jake. Skilled nursing home placement averages $130,000.00 per year. It is far cheaper and healthier to keep these people in their homes.
Medicaid is a line item on a state and federal budget. In order to manage the money being spent it is farmed out to managed care insurance companies. These companies are making money. They are not altruistic. When the federal or state government cuts funds to Medicaid there is a trickle down effect. The easiest way to save money is to go after the consumer. So Aetna, in our son’s case, cuts personal care hours. If they cut care hours from everyone who needs them—people like Jake—they can save a lot of money. The insurance companies are banking on people being too tired, too uneducated, and too beaten down by the paperwork to fight it.
Patients denied services complain to family and friends and try to make do. I really don’t know what happens to them. Do they die sooner because of poor care? Do they end up in a nursing facility? Probably both. The representative from the disability Resource Center in Fredericksburg told me of a patient who was on a ventilator who lives alone and was losing some of his personal care hours. He was encouraged to file an appeal, but chose not to. Like many others, he’d given up.
For Jake to lose these care hours would mean possible bed sores, impacted bowels, frozen joints, more UTIs. It would mean that more of his care will fall on his aging 73- and 75-year-old parents. Unfortunately, Jake is not equipped to file these types of appeals. Typing like I am doing now into the computer is impossible for a person who uses his head as a mouse and lacks the dexterity to write long descriptive narratives.
After we filed Jake’s appeal, Aetna had until 9/20/26 to respond. Since we were appealing a decision they made we requested and were able to keep Jacob’s services in place. So for now he still has 70 hours. These dates are important! Aetna corresponds to us with mail.
On the afternoon of Sept. 22, we received the letter in the mail denying our appeal. The letter stated that Aetna had made that decision eight days earlier, on the 14th, and told us we had 10 days to file a second appeal—10 days from the 14th, which meant we only had until Sept. 24 to get it in.
Two days.
I spent all of Sept. 23 calling and visiting local and state agencies to get guidance on how to best proceed. I spoke to the ombudsman in Richmond, the Medicaid office in Richmond, and the local agencies—disAbilities Resource Center and Healthy Generations. All these agencies either took my call or returned my calls in a timely fashion. I also got the name of three law offices that are helping people in our situation. One finally called me back, after the appeal deadline was past..
On Sept. 24, I spent the day writing and providing more documentation for the Level 2 appeal. This turned into a 12 page document. I was so nervous about getting it in on time that I faxed it twice. Now here is something interesting. You can file all this electronically on the state Department of Medical Assistance Service portal. All you have to do, they said, was set up an account and upload your documents. I got locked out of the portal because my brand new password didn’t fit their parameters. Luckily, my son lives downstairs and by 4 p.m. the day the appeal was do, he set up an account and uploaded the documents.
Today as I write this is Friday, Sept. 25. I feel oddly bereft. All that work, all that scurrying around sent into the multiverse—and silence. From here on we wait. Jake still has his 70 hours during this appeal. This time we will meet with a hearing officer employed by the state. This time the insurance company won’t be involved.
We received another letter from one of Jake’s doctors a day late documenting his medical need for at least 70 hours of in-home personal care services. Thankfully, we were told we could add documents as they came in. So the newest letter was faxed and uploaded, for a total of four medical professionals substantiating our son’s medical needs.
But the waiting is the hard part now.
