Betrayed by Medicaid
I spent nearly eighteen months trying to get my son the care he needed. Then I found internal Medicaid records portraying me as part of the problem.
By Shannon Kennedy
When my son TJ came home from a Medicaid-funded residential treatment facility in April 2025, he was worse than when he left.
He had spent nearly five months at Nexus Children’s Hospital in Dallas, Texas, receiving what was supposed to be intensive treatment for his severe autism and dangerous behavioral challenges. I had hoped he would return home with some meaningful progress, a better understanding of his needs, and a plan for continuing his care.
Instead, I was left trying to arrange the very services I thought he had been receiving.
Nearly eighteen months later, I’m still trying.
What began as an effort to get my son the help he needed has turned into something I never imagined. I’ve spent countless hours researching Medicaid policies, contacting providers, requesting records, filing complaints, and trying to understand why a system designed to support people with disabilities has been so difficult to navigate.
Along the way, I’ve discovered problems that go far beyond my son’s situation.
I’ve also learned things about the people responsible for helping us that have fundamentally changed my trust in them.
The gap between qualifying for help and actually getting it
One of the first things I learned is that being eligible for Medicaid services doesn’t necessarily mean those services are available.
A child can qualify for intensive behavioral support, personal care, therapies, or other medically necessary services and still go months without receiving them.
Sometimes there aren’t enough providers. Sometimes providers don’t have staff qualified to work with children who have complex needs. Sometimes agencies accept referrals but can’t actually provide consistent care.
And sometimes a service is approved, but no one seems responsible for making sure it happens.
In May 2026, Medicaid approved 30 hours per week of behavioral-aide services for TJ. Five months later, he still wasn’t receiving those services consistently.
Georgia’s Medicaid-funded support system depends on a workforce that is difficult to recruit and retain. Direct support professionals and caregivers are often paid relatively low wages for physically and emotionally demanding work. Providers face staffing shortages, turnover, training expenses, and reimbursement constraints.
Children with the most complex needs can be particularly difficult to staff.
These are real problems, and I don’t think most parents understand how much they affect the services their children actually receive.
But understanding why providers struggle doesn’t resolve the problem for the child waiting for care.
If Medicaid approves a service that no provider can deliver, what is supposed to happen next? Who is responsible for finding another option? And how long is a disabled child expected to wait?
For children like TJ, the consequences aren’t minor inconveniences. They can mean going without behavioral treatment, medical support, and assistance with daily care while a parent tries to manage needs that professionals have already determined require additional help.
Those are questions and circumstances I’ve spent an extraordinary amount of time trying to address.
Where does the money go?
The more I learned about Medicaid, the more interested I became in how the money moves through the system.
Medicaid spends enormous amounts of public money on healthcare and disability services. Providers submit claims, agencies administer programs, contractors process authorizations, and government offices are responsible for oversight.
But the paperwork documenting these activities doesn’t always establish what actually happened to the person receiving care.
An approved treatment plan doesn’t prove the treatment occurred. A billed service doesn’t, by itself, establish that it was delivered as documented. And a completed discharge doesn’t mean the patient received the support necessary to return home safely.
Medicaid fraud is a documented problem nationally, including schemes involving services that were never provided, inflated billing, and falsified records. Not every improper payment is fraud, and a billing discrepancy alone doesn’t prove intentional wrongdoing.
But the opportunities for problems to go undetected concern me, particularly in services for people with significant disabilities.
Many people receiving these services cannot independently verify what was provided or communicate concerns about their care. Parents may have limited access to daily treatment records. Oversight agencies often depend on documentation generated by the organizations they’re responsible for monitoring.
And when parents suspect something is wrong, obtaining the records necessary to understand it can be difficult.
After reviewing TJ’s residential treatment records, I began questioning whether the services Medicaid had funded matched the treatment he actually received.
I wanted someone with the authority and expertise to examine those concerns.
Instead, I found myself learning how to investigate them.
What happens when you report a problem?
Before all of this, I assumed that reporting a serious concern to the appropriate agency would lead to someone examining what happened and explaining the outcome.
I’ve learned that accountability is much more complicated.
Different agencies are responsible for Medicaid funding, provider oversight, licensing, patient safety, and investigating fraud or abuse. Each has its own authority, procedures, and limitations.
A complaint can be acknowledged without the underlying problem being resolved. An agency can review one aspect of a situation while another falls outside its jurisdiction. A provider can respond to allegations without a parent ever receiving enough information to understand how the agency evaluated the evidence.
I’ve spent months navigating these processes, and sometimes the responses have left me with more questions than answers.
What troubles me most is how much responsibility falls on the person reporting the problem.
Parents may have to identify the applicable rules, obtain records, recognize inconsistencies, and figure out which agency has the authority to act. Then they have to follow up to determine whether anything was actually done.
For someone already providing intensive care to a disabled child, that can become a nearly impossible amount of work.
I have spent countless hours doing things I assumed were the responsibilities of professionals, investigators, and oversight agencies.
And I can’t help wondering what happens to children whose parents don’t have the time, resources, or ability to do the same.
The people inside the system
The institutional failures have been difficult enough. What I wasn’t prepared for was how my experiences with individual employees would affect my trust.
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I’ve communicated with case managers, state officials, provider representatives, and others whose jobs involve helping people obtain services or ensuring those services are properly administered.
Some have been helpful. Others have left me feeling dismissed, misrepresented, or as though my efforts to obtain care were creating problems for them.
For a long time, I assumed that if I explained our situation clearly enough, provided documentation, and remained persistent, we would eventually make progress.
Then I began obtaining internal government correspondence.
I discovered discussions that characterized my efforts to address service problems as refusals of care. I found statements about my willingness to pursue treatment that conflicted with the extensive correspondence documenting my attempts to obtain it.
In one particularly disturbing exchange, a Medicaid official suggested that a provider should have reported me to child protective services for failing to obtain medically necessary treatment for TJ.
I had spent months trying to get him that treatment.
I had contacted providers, requested services, documented problems, and repeatedly asked for help. Yet I was reading accounts that portrayed me as contributing to the very lack of care I was trying to resolve.
I can’t know what every employee understood, what information they had reviewed, or why they wrote what they did. I also don’t know how widely those statements circulated or whether they affected decisions about TJ’s care.
But I know what I read, and I know what my correspondence documents.
Seeing those statements changed something for me.
I realized that while I was communicating with people I believed were supposed to help us, information about me was circulating behind the scenes that could affect how others understood my actions.
And I had no idea it was happening.
When advocating for your child starts to feel dangerous
This has become one of the most disturbing parts of the entire experience.
I now worry about how my questions will be interpreted.
If I challenge a provider’s qualifications, will that be documented as refusing services?
If I question a treatment decision, will someone describe me as uncooperative?
If I file a complaint, will it affect how the people responsible for coordinating TJ’s care treat me afterward?
I don’t know whether those things will happen. But after reading what I found in the records, I no longer feel comfortable assuming they won’t.
And that’s an awful position for a parent to be in.
TJ has severe autism and cannot reliably explain what happens to him, whether he’s being treated appropriately, or why something is wrong. He depends on me to ask those questions.
But the more I’ve questioned the system, the more I’ve worried about the consequences of doing so.
I find myself carefully documenting conversations, thinking about how emails might be interpreted, and wondering whether raising a legitimate concern could somehow be used against me later.
I never imagined I would become afraid of advocating for my own child.
But I also can’t stop.
If I don’t question the care he receives, who will? If I don’t follow up when services aren’t provided, who is making sure he gets them?
And if I discover something seriously wrong, how could I possibly ignore it?
What this has done to our lives
I think one of the hardest things to explain is how much of my life has been consumed by all of this.
Caring for TJ has always required a great deal of time and energy. But trying to obtain the services that are supposed to help us has become an enormous responsibility of its own.
I spend my time researching regulations, reviewing medical records, writing emails, contacting agencies, and trying to resolve problems that seem to lead to more problems.
I’ve had to learn how Medicaid works, how providers are paid, what oversight agencies are responsible for, and how to challenge decisions.
None of this is what I wanted to be doing.
I wanted my son to receive appropriate treatment and support so that we could have some stability and quality of life.
Instead, much of my life now revolves around trying to make the systems responsible for that support function as they’re supposed to.
And despite everything I’ve learned, I still depend on them.
I can’t walk away from Medicaid because I’ve lost confidence in it. TJ still needs services, and I can’t provide everything he requires without help.
I have to continue communicating with people whose actions I’ve questioned, working through processes that have repeatedly failed us, and trusting organizations with responsibilities I now feel compelled to verify myself.
I’ve learned that systemic failures aren’t always dramatic. Sometimes they’re months of unanswered questions, referrals that go nowhere, services that exist only on paper, and complaints that never seem to produce meaningful change.
And sometimes the people you turn to for help become part of the problem.
I don’t believe every Medicaid employee is dishonest or that every provider is doing something wrong. I know there are people working hard within an understaffed and complicated system, often with inadequate resources.
But I also know what I’ve experienced, what I’ve documented, and what I’ve discovered.
The cumulative effect has been devastating to my trust.
I used to believe that if something went wrong, there would be someone responsible for making it right.
Now I find myself wondering who holds those people accountable when they don’t.
And tomorrow, I’ll still have to ask them for help.
This is just one part of a much bigger story. I’ve spent nearly two years trying to get my son the help he needs, and somewhere along the way, that fight began consuming nearly every part of my life. What My Life Has Become
