by, Renee Wood

In Part II, I spoke of the harm the system imposes on competent adults who use services — harm that is not a figment of my imagination or an overreaction. In this section, I turn to research that confirms what I have experienced: people with intellectual disabilities and those with physical disabilities, but intact intelligence, do not share the same needs. What may be helpful to one, can be harmful to the other, even stunting developmental growth. And isn’t the very purpose of the developmental system supposed to be encouraging growth, not blocking it?

Why MUIs Re‑Traumatize and Block Growth

Mandatory MUIs don’t just strip authority away — they can cause deep emotional harm to competent adults with disabilities. When someone has already handled a difficult situation responsibly, being forced to relive it through an MUI report retraumatizes them. Instead of affirming their independence, the system signals that their judgment is suspect. This breeds feelings of failure, guilt, and incompetence, even when they did everything right. The message is clear: you are never trusted to be the boss of your own life. In this way, MUIs transform accountability from an empowering choice into a punitive burden, eroding confidence and reinforcing inequality. 

This isn’t just about emotional harm like retraumatization or guilt—it’s also about how MUIs stunt developmental growth by trading learning experience for compliance to those in power, whom you are conditioned to believe know better and act in your best interests. In reality, these frontline workers are simply enacting templates handed down by the system, not exercising independent judgment.

Some competent people who receive DD services just give up and let everyone else do it for them. No matter how they try, they cannot be their own boss because the system doesn’t foster independent thought or autonomy. Other people in the system never even get the chance to try to be the boss because when an unfortunate situation happens, they are told what is going to be done to protect them. True independent thought, self-protection and self-governance is learned through experience, not mandates. One might call it the School of Hard Knocks, but actually it forces one to self-reflect on situations, what they can do immediately to solve the current one, and make their own plans on how to reasonably ensure that this won’t happen again. When that is taken away – no one learns or reflects – they just comply! Everyone, whether they are disabled or not, learns through personal experience, rather than dominance and forced compliance.

Definitions of Impairments within the DD system

Before I get into the research on harm in treating everyone the same within a system that was never designed for people with typical intellect in mind – it’s important to understand the distinction between cognitive, intellectual, and severe physical disabilities. Before research on this, I even thought cognitive and intellectual disabilities were the same, but they’re not. When I speak about these functional differences, that doesn’t mean one disability is better than another – all it means is they have different needs for support.

Cognitive disability has nothing to do with IQ. It has to do with mental processes like memory, attention, problem‑solving, or the way one learns. One can have a cognitive disability and also be intellectually disabled, but they are different. An intellectual disability is determined by IQ . If one has an IQ under 70 this indicates significant limitations in intellectual capabilities. Physical disabilities refers to limitations in movement or bodily function — walking, eating, bathing, or even breathing. One can be severely physically limited and still have typical intellect and cognition. Cerebral palsy, spinal bifida, or a chronic illness are all physical disabilities. Of course, anyone with a physical disability could also have a cognitive or intellectual disability, but this has to be diagnosed rather than assumed.

Too often, the system treats “developmental disability” as if it automatically means cognitive or intellectual impairment. That is simply not true. A person can be severely physically impaired — even from birth — and still have typical or exceptional cognition. Conflating physical disability with cognitive or intellectual disability erases individuality, mislabels competent adults, and forces them into frameworks that don’t fit. What helps one group can actively harm another, stunting growth and stripping autonomy. If the system is truly about development, then it must stop assuming that all disabilities are the same and start respecting the difference between physical, sensory, cognitive, and intellectual needs.

What the Research Covers 

Even research suggests that the harm to competent adults with physical and sensory disabilities is real. Although there is no large body of studies specifically focused on “competent adults with typical cognitive abilities” being placed into systems designed for people with intellectual disabilities, incidental evidence does exist. These studies examine differences between cognitive and intellectual disabilities, or how mixed‑ability educational and service settings affect outcomes. What we do know is that when people with typical intelligence are treated under frameworks designed for those with limited intelligence, it often leads to loss of autonomy, lowered expectations, and stunted developmental growth. Is that what we want for individuals in the system who have typical intelligence? Shouldn’t more research be done to uncover the full extent of this harm? 

*Cognitive vs. Intellectual Disability Distinctions

Studies emphasize that cognitive disabilities (such as brain injury, learning disabilities, or physical impairments with intact cognition) differ fundamentally from intellectual disabilities (low IQ, adaptive functioning deficits). Yet systems often blur these categories, applying the same interventions to both. 

*Educational Settings

Research on inclusive classrooms shows that students with typical intelligence but physical or sensory disabilities often face lowered expectations when grouped with peers who have intellectual disabilities. This can undermine self‑esteem, independence, and skill development. 

*Service Systems

Literature on developmental disability services notes that frameworks built for intellectual disability frequently fail to adapt when serving people with physical disabilities but intact cognition. This mismatch can lead to frustration, dependency, and erosion of self‑determination. 

*Trust and Autonomy

While not always framed as “studies,” advocacy reports and qualitative accounts highlight how mandatory reporting and system oversight erode trust for competent adults. These accounts echo my blog’s theme: when treated as if we lack judgment, individuals with typical intelligence internalize feelings of incompetence and lose opportunities for growth. 

Research rarely addresses the harm done to competent adults forced into intellectual‑disability frameworks. More investigation is needed before another generation is subjected to the loss of autonomy, lowered expectations, and stunted growth — compounded by damage to self‑esteem, independence, and skill development. 

Historical Perspective of Ohio’s Developmental Disabilities System

When Ohio’s system first took shape, it was built for people with very low I.Qs, and the assumption was that they needed lifelong protection and supervision. I am not implying that today all people with intellectual disabilities need or needed that type of protection. I’m just saying back in the day that’s the way it was seen, so the system was built around the idea of protection and supervision.

That narrow design of I.Q. based inclusion into the system, didn’t change on its own. It changed because parents refused to accept exclusion for their children with autism, cerebral palsy, epilepsy, and other conditions. They organized, they lobbied, and they pushed legislators until the law was rewritten. Federal statutes like the 1970 Developmental Disabilities Act may look like the government suddenly broadened its heart, but in truth those laws were the product of relentless parental advocacy. Without parents demanding inclusion for their typical I.Q. children with life long functional needs, the system would have stayed locked into an I.Q. test model for eligibility. And that history matters today, because it explains why so many competent adults are trapped in a framework that was never designed to foster self‑governance, decision‑making, or self‑protection. 

At the time the law was changed did parents or legislators truly understand the long-term ramifications on people with typical I.Qs who had functional limitations which were expected to last a lifetime? No! There was no ill intent on anyone’s part. It was a time when people with disabilities did not have a voice and parents wanted them to have all the opportunities to live in community.

Although everyone saw the benefit of people with functional needs served through a system that had already been caring for people’s functional needs along with their intellectual impairments, few ever questioned how it would affect intellectual and self-governance development. Who could blame them – they had nothing for their children at the time – and at least this was something.

However, the system did not grow with the inclusion of people with non-intellectual disabilities. Anyone who reads through assessments can clearly see the system still caters and protects people with intellectual disabilities without exception to those who don’t need these types of services. In other words, everyone takes the same assessment and every section of the assessment is included in everyone’s plan of action – Individual Service Plan (ISP), even if that section of the assessment clearly does not fit that particular individual. These plans clearly reflect the medical model of serving individuals with disabilities. The system will claim that it has grown to be “person centered”, but it is obvious who the plan actually centers around. It centers around protecting the status of the system, not individual choice. In the end, these so‑called “person‑centered” plans reveal exactly who the boss really is — the system itself, not the individual whose life is being dictated.

What Self-Directed Services Really Are in Ohio

Ohio likes to claim that the SELF waiver is “self‑directed,” but anyone who looks closely can see the cracks. Yes, it technically meets the Centers for Medicaid/Medicare (CMS) definition because it offers both employer authority and budget authority. But in reality, the waiver is capped, restricted, and boxed in by system templates. The choices are narrow, the funds are limited, and the so‑called person‑centered plans still revolve around protecting the system rather than empowering the individual. On top of that, this is only one waiver out of five in Ohio. What CMS envisioned as true self‑direction — flexibility, autonomy, and control — has been reduced in Ohio to a tightly managed program that gives the appearance of independence while keeping the reins firmly in the system’s hands. 

So if there is a cost cap in Ohio on the only waiver that meets the technical definition of “self-directed services” then again, the system is still the boss on who can self-direct. Only people whose needs fall under the $40,000 a year mark, are seen as eligible for self-directed services. Many of us with significant physical needs exceed that amount, yet we have gone to college and have no cognitive deficits (not that that should be a deterrent if we did), so we are more than capable of self-directing our services. The Ohio system may meet the letter of the law for self-direction, but it certainly does not meet the spirit of the law.

Conclusion

When safety overshadows autonomy and self‑direction, you are not the boss — the system is. Ohio’s framework may meet the letter of the law, but it denies the spirit of freedom by keeping competent people under caps, mandates, and templates that strip away trust and authority. And when nearly everyone in the system is a mandatory reporter, trust itself is eroded; you cannot build authentic relationships when you are expected to report yourself or betray those closest to you. Part IV will explore what we can do about it. The options are limited, but change will require radical advocacy and a willingness to sacrifice some comfort until, as a people, we secure what we truly want: freedom and self‑determination. History shows us that freedom is never handed over easily — it is fought for. Ukraine stands as a powerful example of sacrifice in the name of self‑determination. If we want to be free, we must be prepared to demand it, even at a cost.