by, Renee Wood

It’s a new year, and I think I finally understand why God is keeping me here. After 45, every attempt to secure a career job — full‑time or even part‑time — never worked out, though I could always find contract work. I often wondered why, since I have the knowledge, experience, and leadership skills any employer should value. At the same time, God has kept me alive far longer than expected with stage 3b ovarian cancer, and in relatively good health. That contradiction convinced me there must be a deeper reason.

Sometimes life delivers an unforeseen moment that wakes you up to a truth you can’t ignore. For me, writing my autobiography and compiling my blogs into a book were major accomplishments. I believe God wanted me to do that, but I now see He was using those projects as stepping stones to something greater: the courage to speak a truth that few want to hear. A truth that challenges the very foundations of the developmental disabilities service system. 

But the elephant in the room is that as long as we have MUIs (Most Unusual Incidents) that are mandated for people who are competent – there is no such thing as self-determination, or self-direction in the Developmental Disabilities System. It’s a lie! And as long as everyone who works with people with developmental disabilities is a mandatory reporter — there can never be any trust! They will always be over us. It will always be an “us versus them” situation because as long as mandatory MUIs exist — we are not equal. In other words, we do not have ultimate control over our own lives, decisions, and destinies. Someone else is watching and waiting to step in at the least little incident. 

That loss of trust runs deeper than most people realize. That unforeseen moment I spoke about – was my first ever MUI. That woke me up to emotions, humiliation, and sheer lack of trust that I cannot ignore. When nearly everyone connected to services is a mandatory reporter — SSAs, support brokers, even friends with developmental disabilities who happen to work in the system — trust is eroded at the most personal level. Imagine being in a romantic relationship where both partners receive services and also work within the system. If something happens to your partner, are you expected to report them? If you yourself experience a reportable incident, are you expected to report on yourself? These are not abstract questions — they are lived realities. Yet no one in the system seems to wrestle with the ethical contradictions of forcing people to betray their closest relationships in the name of “safety.” When mandatory reporting is everywhere, trust is nowhere, and the very foundation of self‑direction collapses. 

This damage isn’t theoretical — the situation like the one below show how MUIs turn everyday struggles into violations of trust and autonomy. Hypothetically, imagine someone in the system has money stolen from them — whether it’s a dollar or a thousand. They take care of it themselves: cancel the debit card, buy a lockbox, report it to the bank, and tell the person they are no longer welcome in their home. There’s nothing left to be done. Later, they just want to vent and share the experience with a longtime friend in the system, asking for perspective on what else they could have done. But that friend is a mandatory reporter. Suddenly the conversation shifts: “I have no choice but to report this.” 

In that moment, the person realizes they’ve suffered two violations of trust, not just one. First, the theft itself. Second, the betrayal of confidence when their friend is forced to report them. What began as an effort to process and heal now compounds the pain: “I should have known better than to trust anyone. How stupid could I be for telling someone? Now I feel even worse. I’m just a loser anyway — no matter what I do, I don’t get credit.” 

Although they handled the situation correctly, the humiliation of having an MUI tied to their name is palpable. Worse, because they resolved it themselves, the system offered no help — only the burden of wondering what they did wrong to deserve to be seen as “vulnerable” and in need of protection – when the system did nothing but make the pain and trauma worse! Should the person report an MUI on the system for emotionally traumatizing  them when it wasn’t necessary?

So what does mandatory MUIs mean? That means if you’re a person living with a developmental disability, and receive services through the DD system, and something unfortunate happens, you should not tell anybody in the system if you can and want to handle it yourself. Ultimately MUIs should be a self reporting mechanism for those who are competent and want some kind of protection from what happened to them. Everyone, whether they are disabled or not, have been taken advantage of, or hurt by another person in some way at some point in their lives. For non-disabled people, they have friends that they talk to and discuss the issue with. Maybe it’s just venting that helps them come to a realization of what they need to do to solve the situation. If it’s bad enough, maybe their friends help them realize reporting it to the police may be the right way to go – but it’s their decision. They do not have a “brother’s keeper”.

Mandatory MUIs create a system where trust is broken, autonomy is denied, and competent adults are treated as if they cannot be trusted with their own lives. What should be a tool for protection has become a mechanism of control, leaving people humiliated, retraumatized, and silenced. Until MUIs are reimagined as a voluntary, self‑reporting option, the promise of self‑determination will remain an illusion. In Part III, I will show how this betrayal of trust translates into real harm — harm that leaves lasting scars far beyond the paperwork.