by, Renee Wood

Scenario 2: The System Itself Has Come to BELIEVE the Lie

In this scenario, the system is not malicious — it is misguided. The system has repeated its own diluted definition of self‑determination and person‑centered planning for so many years that it has become rote. There has never been any objective, analytical examination of what self‑determination actually looks like, behaves like, or feels like in this system compared with the lives of typical Americans. The Centers for Medicare and Medicaid Services (CMS) wrote new rules in 2014 stating that the lives of Medicaid recipients should mirror those of typical Americans. In Ohio, they don’t. When challenged, people in authority repeat the same explanations they’ve heard for decades, and they genuinely believe this is what self‑determination looks like for people with developmental disabilities. They cannot see the oppression because they sincerely think they are one of the best systems in the country when it comes to self‑direction and autonomy. Ignorance hurts just as much as malice — but it must be handled differently. Strategies focus on education, reframing, and exposing contradictions gently but firmly.

What Individuals With Developmental Disabilities Can Do

1. Speak for yourself whenever possible

It doesn’t matter if you’re 7 years old or 90, whenever possible, you should speak for yourself. It doesn’t matter if you speak with a speech impairment, communication device, or through an interpreter who conveys your exact words, you should be leading the conversation about what you want, about your life, about how you feel about things, about policies that affect people with disabilities and anything else you think appropriate. Don’t let anyone say, “Oh I know what you want, I can handle this for you”. In my case the best one I’ve ever heard was; ” it must be so taxing for you to speak – I can do it for you”. Of course that was promptly corrected. Find your voice young and keep using it! This is your responsibility.

• Educate the system about your actual abilities

Doesn’t matter if it’s primary school, college, or the DD system – it’s important that you tell them what you are capable of. For example, “I can do math – I just need someone to write for me”. “I am capable of understanding the content, I just need it to be read out loud”. “I do not need an MUI. I gave that $10 to my friend with full knowledge that I might not get it back. That was my choice”. “Yes, I am a full-time wheelchair user, but I don’t need, or want 24 hours care”. It is your responsibility to know your needs and to call the system out when they are acting against self-determination.

• Request policy explanations in plain language

If your staff, or someone in authority, is citing a rule that acts directly against what you want, ask them to show you that in plain language. Don’t just take their word for it, have them write it down, tell them you want the rule number. If it is not in plain language, ask your ally to look up that rule and explain in plain language if that’s what it means. Don’t feel incompetent, even non-disabled people have to hire lawyers to interpret the law that is what your ally is for. If indeed the rule is acting directly against your self-determination, and non-disabled people do not live under that same restriction, point out this is a contradiction to the claim that the system is self-determined. The system will either have to change, or admit that it’s a lie. Remember, do not take “some day” for an answer — we are talking about right now. If it’s not true right now then this system cannot claim it’s self-determined. We are educating the system about the fallacy that it practices self-determination.

• Again, create or join advocacy groups that are run by people with disabilities

Once again ensure these facilitators are not employees of the County Board. Also join advocacy organizations such as People First or Ohio Self-Determination Association whose membership includes many people with disabilities. Also, your Ohio Statewide Independent Living Council, as well as boards of trustees of local independent living centers where 51% of board members and staff are required to have a significant disability. Oftentimes these centers have CEOs with disabilities. This is another way to organize and educate the fallacy that the DD system is self-determined as well as self-directed.

What Families Can Do

1. Support autonomy

Support your child in what they are saying about their own capabilities. Allow your child to tell staff first about what they are capable of. If staff doesn’t seem to understand, reiterate what your adult child said. For example, your child says, “I go out Friday night on my own with my significant other. I am capable of handling being on my own with the help of my significant other”. If staff seems hesitant to allow that, just say, “Yes, my child goes out alone. If they say they can handle that – then they can”. In other words, don’t say “If my child told you they can do something then I verify that they can do this”. If you verify approval, then the staff will look to you for the “okay”, rather than what your child is telling them. It is important to make your child the voice of authority – not yourself. If you disagree with what your child is telling staff about their abilities, have that conversation with your child in private. If there is a clarification to be made with staff, then your child should be the one to initiate that.

What Providers Can Do

1. Re-train provider agencies, staff and professionals in the system

A massive retraining effort is needed for agency providers and staff to understand the different types of support required across disability sub‑categories in the developmental disabilities system. Everyone is equal, but not everyone needs the same level or type of support — and that distinction matters. A person with cerebral palsy who walks does not need the same supports as someone with cerebral palsy who cannot walk. Neither person is “better” or “worse”; they simply need different supports to reach the same goals. The same is true when comparing someone with an intellectual disability to someone with a purely physical disability. Both have the right to control their own lives, but the support required to make that possible looks very different and must be respected.

Too much support for someone who is intellectually capable can stunt their growth. Not enough support for someone with an intellectual disability can do the same. And disability type alone is not the whole story — some people with intellectual disabilities still make their own decisions independently because that’s how they developed. This is why it is essential to understand the individual, not just the label, in order to provide the correct level of support. When the system learns to match support to the person instead of forcing the person to match the system, real self‑determination becomes possible.

What Policymakers Can Do

1. Reform funding streams to give individuals direct control

Changing the funding stream to give individuals or their families, control over their budget would make a huge shift in individuals having control over their lives. We should keep assessments pretty much the same – so whatever the assessment says their level of need is – the budget should still be based on that. However, how that individual decides to allocate that budget to meet their needs should be pretty much up to them.

How would this change control? The individual would be setting the amount they pay providers for their care causing true competition in the market. Providers will begin to please the consumer who pays them, and not the government bureaucracy. The individual would be dictating the schedule because they are paying the providers. The individual is the one that would hire, train, and terminate providers. It has been proven that when people control their own budgets, costs go down, satisfaction goes up, and individuals gain more ownership and responsibility over their own lives. Individuals’ control over their own budget could change everything in the system. This alone could bring true self-determination and self-direction.

• Incentivize accountability structures that center the individual

If we want real change, we have to redesign the accountability structures so that everyone in the system is accountable to the individual—not the bureaucracy. Right now, providers answer to the county board, the county board answers to the state, and the state answers to CMS, leaving the person with a developmental disability at the bottom of the pyramid. When accountability is centered on the individual, everything flips: providers are evaluated based on the person’s satisfaction, not the paperwork; county boards should be measured by whether people are genuinely satisfied with services that support a self‑actualized life, not by whether they meet manufactured goals that typical Americans are never required to write down; and funding rewards autonomy, not compliance. This creates a system where the individual—not the agency, not the SSA, not the provider—is the one everyone must answer to. That is what true accountability looks like, and it is the only path to a system where people with developmental disabilities are finally in charge of their own lives.

• Institute disability training and due process regulations in the DD System

Policy makers should require training on the distinctions among disability types within the system. As I said above, this is not the only factor that determines a person’s abilities, but it is an essential starting point. No one wants to be mislabeled and then live with lifelong consequences from that misinterpretation. Person‑centered planning must become a reality, not just a phrase on paper. It cannot be a meeting where the person sits in the center of the room, the planning goes on around them, and they never get the chance to speak. It must be the place where people’s true capabilities are understood by listening to what the individual says—not by making assumptions based on how they look or behave.

Policy makers should also require that any MUIs or human rights restrictions involving intellectually capable and competent adults go through due process, with the individual present for all hearings. These decisions must be based on facts, not hearsay or assumptions. If a fully competent adult does not want an MUI attached to their name, then one should not be filed. And if a rights restriction is truly necessary for the safety of an intellectually competent adult or others, it must be time‑limited—just as it would be if they were appearing in court. Other than immigrants under today’s administration, people with developmental disabilities are the only population in the United States who can have their rights stripped away without legitimate due process.

Under the illegitimate due process in the DD system, we are not guaranteed the right to:

–  legal representation 

–  confront evidence

–  cross‑examine witnesses

–  refuse an investigation

–  be present when decisions are made 

–  appeal to a neutral court

–  have rights restored automatically

This must end.

When the system truly believes its own myth, the work becomes slower but no less necessary. In these cases, our strategies must focus on education, clarity, and exposing contradictions with patience and persistence. We are not fighting malice; we are fighting a misunderstanding that has hardened into culture. By speaking for ourselves, correcting false assumptions, and insisting on plain‑language truth, we help the system see what it has been unable to see on its own. Change comes not from confrontation alone, but from teaching the system what real self‑determination looks like in practice.

Across these five parts, one truth has become unmistakable: people with developmental disabilities are not the boss of the system—not yet. But we can be. Some of this is on us – if we really want to be the boss of our lives and our services, then we have to start to act like one! Real authority does not come from slogans, paperwork, or empty assurances; it comes from power, control, and the ability to direct our own lives without interference. Whether the system knowingly maintains control or sincerely believes its own myth, the path forward is the same: we must claim our voice, document our choices, challenge false assumptions, and build collective strength. Families, providers, and policymakers each have a role, but the center of gravity must always return to the individual. Self‑determination is not a gift the system can give us—it is a right we must insist on, protect, and practice every day. When we do, the system will have no choice but to follow our lead. That is what it means to finally be the boss.