THE FIGHT AFTER THE SETTLEMENT: SPECIAL NEEDS TRUST CHALLENGES

What Nobody Tells Families About Raising a Disabled Child Inside a Court-Controlled System

By Michael Urbanowicz

This right here is why we keep fighting. 💜 What started as a father searching store after store for shoes that would actually work for his daughter became a mission much bigger than us. Through the struggles, therapies, setbacks, victories, and unanswered questions, we realized families like ours deserved better. Better support. Better understanding. Better adaptive products. Better hope. This is more than a story about disability. It's a story about love, resilience, faith, and refusing to give up on your child. This is why we built Faith Over CP. 💜

Families are often unprepared for the special needs trust challenges that begin after settlement. People think the battle ends when a medical malpractice case settles.

For our family, that was the moment an entirely different battle began.

My wife, Brittany, and I spent years fighting for our daughter, Sophie, after catastrophic birth injuries left her with cerebral palsy, developmental delays, mobility impairments, and lifelong medical needs.

We fought because we loved our daughter and wanted to secure the care she would need for the rest of her life.

After years of litigation, we finally reached a settlement intended to protect Sophie's future.

What nobody prepared us for was what happens afterward.

Once the settlement was over, we entered a system in which we no longer had full control over the funds for our daughter's care.

And that reality has nearly broken our family.

WHO WE ARE ACTUALLY FIGHTING FOR

Before I go further, I want you to understand who is at the center of all of this.

Sophie is our daughter. She has spent more of her young life inside therapy rooms than most adults will in their entire careers. She works harder in a single physical therapy session than I have worked at most things I have ever done. Every gain she makes — every step, every word, every breakthrough — was earned by her.

When therapy stops, those gains can vanish.

That is the stake.

Not paperwork. Not legal theory.

A child's body, mind, and future.

THE REALITY OF SPECIAL NEEDS TRUST CHALLENGES

Because Sophie receives Medicaid-related benefits, the settlement funds were placed into a court-created Special Needs Trust.

At first, that sounded reasonable.

We understood the purpose: preserve benefits, protect funds, and secure long-term care.

But what we did not understand was how restrictive the structure would become in everyday life.

In Ohio, we cannot simply spend trust money for Sophie's needs.

Not even close.

If Sophie needs something significant medically or therapeutically, the process looks like this:

First, we contact an attorney.

Then the attorney prepares filings.

Then it goes through the clerk of court.

Then it goes before the judge.

If the judge has questions — which often happens — additional discussions or roundtables may be requested.

Then it goes back through the attorneys again.

Sometimes the process takes months.

Meanwhile, Sophie's needs do not wait.

Cerebral palsy does not pause for court scheduling.

Therapies do not stop because paperwork is pending.

Children with disabilities continue growing, developing, regressing, struggling, and needing care every single day.

And yet families like ours are often trapped waiting for approvals just to access care-related funds already intended for our child.

THE BOND

At one point in this process, I was told I needed to post a bond.

If you have never been through this, here is what that means in plain English: a surety bond is a financial guarantee — essentially an insurance policy the court requires before allowing a parent to help administer their own child's settlement funds. It exists in case the parent steals or mismanages the money.

I had years of fighting for Sophie on the record.

I had a clean financial history.

I was not asking to misuse anything. I was trying to care for my disabled child.

None of that mattered.

You spend years fighting to protect your child, and then you realize the system itself does not fully trust you either. Meanwhile, you cannot freely spend the money anyway, because every meaningful expenditure requires layers of approvals.

At some point, the emotional exhaustion becomes overwhelming.

ALL WE WANTED WAS PRE-APPROVAL

That is one of the biggest reasons we pursued moving the trust to Pennsylvania.

People assume we were trying to avoid oversight.

That was never the goal.

What we wanted was practicality. We wanted pre-approved categories for Sophie's recurring care — therapies, equipment, medications, adaptive needs — so we did not have to turn every aspect of her life into a public court proceeding.

We did not want every therapy, every support need, every medical expense, every caregiving issue, every adaptive request to become another filing attached to our daughter's name forever.

We wanted the ability to care for Sophie efficiently, without constantly living inside a courtroom process.

That is what we thought Pennsylvania might provide.

SO WE MOVED

We were told the trust transfer process could not begin in earnest unless Sophie physically resided in Pennsylvania first.

So we trusted the advice we were given.

We used what savings we had left to move our family.

We uprooted our lives because we believed we were doing what was best for Sophie's long-term future.

But once we got there, we discovered another devastating reality: the therapy waitlists were massive.

For a child with cerebral palsy, you cannot simply stop therapy. You cannot pause physical therapy for months or years and expect everything to be okay.

Therapy is critical to maintaining mobility, coordination, muscle function, developmental progress, and long-term quality of life.

Without continuity, children regress.

So while trying to navigate interstate trust administration, Medicaid systems, and probate court processes, we suddenly found ourselves forced to continue therapies in Ohio out-of-pocket.

Around $750 per week.

At the same time, because Sophie's Medicaid coverage had shifted, some of her medications became tied to Pennsylvania.

Her anti-seizure medication costs roughly $600 per month if paid privately.

So now we literally drive back to Pennsylvania just to get the medication she medically needs, because that is where her coverage exists.

That is our reality.

Not theory. Not politics. Not a legal strategy.

Reality.

WHAT PEOPLE NEVER SEE

The public sees the words: "medical malpractice settlement."

What they do not see is the bureaucracy, the hearings, the approvals, the delays, the therapy waitlists, the interstate Medicaid problems, the caregiving exhaustion, and the years families spend trying to hold everything together afterward.

They do not see parents draining savings while trying to preserve therapies.

They do not see families spending hours driving across state lines just to obtain anti-seizure medication for their child.

They do not see the emotional toll on a marriage when nearly every aspect of your disabled child's life is filtered through systems and approvals. Brittany has carried this alongside me every step of the way, and her story is hers to tell — but no one should be naive about what years inside a system like this can do to two parents trying to hold a family together.

And they definitely do not see how quickly a family can go from believing the settlement solved everything to feeling trapped inside a structure they never fully understood at the beginning.

WHAT NEEDS TO CHANGE

I am not arguing that Special Needs Trusts should be abolished. They exist for important reasons. Medicaid preservation matters. Oversight has a purpose.

But the current structure, in many states, assumes parental bad faith and forces families to litigate their own child's daily life.

That is fixable.

Three changes would matter:

1. Pre-approved spending categories. Therapies, durable medical equipment, prescription co-pays, adaptive devices, and medically necessary care tied to a diagnosed condition should be approvable as a class, once, with annual reporting — not relitigated line by line.

2. Interstate continuity. When a family moves to comply with trust-transfer requirements, Medicaid and therapy access should not collapse in the gap. There needs to be a bridge mechanism so that children with progressive conditions do not regress while paperwork moves between states.

3. Bond reform for parent fiduciaries. Where a parent has a clean record and ongoing court reporting obligations, the bond requirement should be reviewable and waivable on the record — not reflexive.

These are not radical reforms. They are practical ones.

WHY I AM TELLING THIS STORY

I am not sharing this for sympathy.

I am sharing it because families deserve honesty about what life after settlement can actually look like, and because the people who can change this — legislators, judges, trust administrators, the bar — should hear it from a parent who lived it.

Special Needs Trusts exist for important reasons. Medicaid preservation matters. Oversight has a purpose. But there also needs to be room for humanity, practicality, therapy continuity, and parental dignity inside these systems, especially when the people carrying the burden are parents who already sacrificed everything fighting for their child in the first place.

Our family did not stop at surviving this. Sophie's circumstances are also the reason we built Faith Over CP — a nonprofit and adaptive-orthotic effort designed so that the next family in our shoes has tools, allies, and a community we did not have when we started.

We fought because we love Sophie.

We keep building because she deserves better than what we walked through. So do the families coming behind us.

If there is one thing I wish families understood before entering this world, it is this:

The lawsuit may end.

The battle afterward often does not.