by, Renee Wood

Summarization and Question

Before I conclude with how to change the system to get real authority over our lives – people with developmental disabilities, the rules that determined how things are done, and control over our Waiver budgets, I’d like to summarize what was in the last three blogs. In Part I, I challenged the feel‑good slogan that people with developmental disabilities are “the boss” of their own lives, exposing how the system holds the real power. In Part II, I showed how mandatory MUIs and universal mandatory reporting destroy trust and make true self‑determination impossible, even for competent adults. In Part III, I laid out the deeper truth the system refuses to confront: not all disabilities are the same, and treating physical, cognitive, and intellectual disabilities as interchangeable causes real harm, stunts growth, and mislabels capable people. Now, in this final part, I turn to the question that has been building from the beginning — if the system isn’t the boss and we aren’t allowed to be, then who is, and what will it take to claim that role for ourselves?

In this final blog on “Who’s The Boss” I would like to ask the question: who the system honestly thinks the boss is? Since I’ve proved that people with developmental disabilities are not the boss of the system, or their personal budgets for support, or their lives – then who does the system honestly think the boss is? Are they knowingly pulling our legs when they claim such a thing? Or do they honestly believe that? Which one is true will tell us how to change the system so we are truly in control.

This is setting up two possible realities for why the system claims we are the boss and have authority over our lives, but when push comes to shove, I’ve proven that we don’t. The system has always had the final say in anything important. In the paragraph above, I set up the two questions below that will take us into figuring out how to gain and keep real authority over our lives. It takes a lot of different journeys to get there. Since I honestly don’t know which of these the system is operating from, I have to cover both scenarios. I have a feeling it’s a bit of both. It also depends on who you’re speaking with in the system and how high their rank is. Here are the two possibilities. I will cover number one in this blog, and number two in in part five of “Who’s The Boss”.

 1.        They know “you’re the boss” is a lie and say it anyway

2.         They genuinely believe the slogan is true

If one of these is true, which one would be easier to change — and why? If the system knows “you’re the boss” is a lie and says it anyway, then we’re dealing with a culture of convenience, patronization, and control. That kind of dishonesty is hard to uproot because it protects the system’s power. But if they genuinely believe the slogan is true, then the problem is ignorance, not intent — and ignorance can be corrected. Beliefs can be challenged. Assumptions can be exposed. Systems can be retrained. Understanding which mindset drives the system tells us where to push, how to push, and what it will take for people with developmental disabilities to finally gain real authority over our own lives.

Who Makes the Rules Matter

Before we go on to strategies to claim authority over our own lives, I need to speak a little about the lives of typical Americans. Having self‑determination, control, and authority over one’s life doesn’t mean there are no rules to follow — it means that you, or people like you, are the ones who make those rules. City councils, state representatives, and governors all live in the communities they govern and follow the same rules as everyone else. In other words, someone from the City of Columbus does not sit on the Toledo City Council and make rules for a city they don’t live in. The people making the rules are also the people who must abide by them.

After 50 years of County Boards of DD, we finally got legislation requiring that every county board of trustees include at least one voting member with a developmental disability. It’s a step in the right direction, but remember: two of the seven members are mandated to be parents of adults with DD. They will never have to live under the rules they create for their adult children. And there is no requirement that those adult children are not intellectually capable of making their own decisions. What I’m trying to emphasize is that self‑determination and authority over your life do not mean there are no rules — it means that you, or people in situations similar to yours, come together and create rules you all agree to live by. Who makes the rules is critically important. If they don’t have to live by the rules they create, then they should not be making rules for people whose lives they do not share.

What Can We Do to be the True Boss?

Earlier I proposed two different mindsets within the DD system. The first is that they know exactly who the boss really is — and it’s definitely not the individual receiving services — so they knowingly lie to us, using placation to make us feel good about being “in control” when they know that isn’t true. The second mindset, and I do think some people in the system fall into this, is that they’ve bought the lie themselves. They genuinely believe we are in control of our lives, even when the facts say otherwise. They keep trying to fight the unfightable, assuming something must have gone wrong because, in their minds, the rule is that we are the boss.

Scenario 1: The system knows the truth – that ultimately they are in control

In this scenario, the system is intentionally maintaining power while pretending individuals are “the boss.” This may not be done in malice, but because they really think we need protection. And although that is true for some – it is not true for all. It’s easier for the system to enact the same rules for everyone than to look at them as individuals. Then they placate us by telling us that “We are the boss”. We are not children so many of us see right through that, but we are stuck because we need supports from the system and don’t know how to fight that lie.

For each scenario I will cover the same groups that need to strategize to assist us in gaining real self-determined lives and governance over our supports and budgets. Each of these groups has their own role in changing the system to gain real control over our lives. These groups are: people with developmental disabilities, families, providers, and policy makers. In scenario 1, strategies must confront dishonesty, expose contradictions, and apply organized pressure.

What Individuals With Developmental Disabilities Can Do

1. Put your decisions in writing.

Do your homework and put what you want in writing — especially before your ISP meeting. This keeps the system honest. They cannot come back and say that’s not what you said, or that’s not what we heard. If you cannot physically write — find an ally (someone who believes in what you want) to assist you in writing it down — you are allowed to have anyone you want at your ISP meeting — even if you are not your own guardian. This includes your other friends with developmental disabilities. If your ISP team refuses to have your ally present — make a formal complaint to the county board. You can enlist the help of Disability Rights Ohio if you need help navigating the process and your SSA hasn’t followed through in helping you navigate the appeal process for whatever reason.

 If necessary, have each member of your ISP team sign what you have written down, saying that they’ve read it. This forces the system to respond to your actual words – and not their assumptions about what you want or need. Even if they say they have it in the ISP notes, have them sign your document anyway. It takes two minutes; it will not hurt them.

• Every time they override your choices – document it in writing.

Keep records of every time staff or the County Board or even parents and guardians override your decisions. Remember, you can use AI to assist you, or use speech recognition to document it. It’s important to put the date you requested what you were asking for, the date it was denied, or just not acknowledged. And what it was that did or didn’t happen, and the reason they gave. This becomes a record for complaints, advocacy, and legislative change.

• Use collective action

Join or start advocacy groups that speak with one voice. These groups should be the voice of people with developmental disabilities and not that of county board organizations that speak on behalf of the system. This is because much of what this advocacy group may be going up against is things that go on in your everyday life under the county board system. Things such as objections to MUIs, ISP decisions and budget denials. I find it remarkable that these advocacy groups run by the county boards are usually guided towards fighting for: transportation, accessible affordable housing, and other global things, but not the issues that touch the everyday life of the person living under the County Board regime. It’s remarkable how perfect they think they must be.

Many county boards have advocacy groups, but the staff who facilitate these advocacy groups are paid by the county board – that is a conflict of interest. What that means in plain language is, if the system is paying them, they’re not going to assist people in going against the system when necessary. It’s okay to speak and ask first for what you want. But when the answer comes back “No”, the county board employees have a disincentive to assist the group in carrying it further because their job may be at risk. That’s why it’s important that these advocacy groups be led by people with developmental disabilities and unpaid allies not directly connected to the paid DD system, which means they may be affiliated with the system, but not paid by it.

• Activate the Phone‑Tree Protest

A phone tree should be activated when something unjust happens in the system. These could be things such as an MUI for a cat scratch, or a competent person handling an unfortunate situation on their own, and still getting an unwanted mandatory MUI placed on them, or a final denial on a legitimate budget request, or someone’s human rights taken away without them even having the right, or the knowledge of the date in order to appear before the Human Rights Committee that took these rights away. This will overwhelm the system’s capacity, expose the misuse of the system’s rules, and force them to communicate with all of us, so that person doesn’t have to fight in isolation on their own!

• Refuse to be placated

When the system placatively claims that “You’re the boss”, when everything else is to the contrary – challenge that notion with facts! Ask the question, “If I’m the boss, then why don’t I get to pay my next-door neighbor to take me to work just because I am on an I/O waiver”? If the system responds with, “We’re working on that”. Respond with, “That might be true, but right now the fact is I am not the boss of my budget”. “If I’m the boss, then why did I have a bureaucratic mandated MUI placed on me, when I didn’t want it, or need it”? “If I’m the boss, then why didn’t I have the right to appear in my own defense when my human rights were ripped away from me by the Human Rights Committee”? Rest assured, they will come up with answers, but none of them will prove that we’re the boss – so don’t buy it! I assure you, when that change comes that you are the real Boss, you will know it and feel it!

What Families Can Do

1. Support autonomy without overstepping

It’s the family’s job to support and hear what the adult child wants – even when they don’t fully see how it can work. This is especially true when the County Board or support staff are going directly against what the individual wants. The family should always reiterate what the person wants, and ask if they can work together to figure out how this could happen. Is the family siding with the adult child? Yes! Even if it doesn’t work out, that child knows their family sided with them and gave them a chance.

• Shift from “protector” to “partner”

Oftentimes I have seen county board staff align with parents because they communicate on the same level. The county board workers communicate to the parents that they understand how difficult it must be. The family hungers for this attention and affirmation and oftentimes strike up a relationship, leaving the person with developmental disabilities on the sideline, as the parent, staff and county board plan this individual’s life for them. I have seen this tactic used in nursing homes, ICFs and even in supported living homes, where staff strike up a relationship with the family to gain their trust so they can do what’s convenient with their family member – leaving the family to believe that they have the person with DD’s best interests at heart. Don’t fall for it! Oftentimes it’s a lie! Your relationship should be with your family member primarily, and the staff secondarily. It’s your obligation to your family member to help them be heard, and advocate with your family member for what they want.

What Providers Can Do

1. Move from “managing” to “supporting”

The difference between managing and supporting an individual is this: managing says, “Here is the best way to do this” (usually for the convenience of the agency rather than from the viewpoint of the individual). Supporting says, “If this is what you want, let’s figure out how to make it work for you.”

Sometimes managing isn’t about big things; sometimes it’s the little things that count. For example, Johnny has four rolls of toilet paper left. He goes grocery shopping every week, and Johnny knows those four rolls will last him two weeks. However, staff claims that Johnny needs to buy toilet paper this week at the store. Johnny usually buys a 12‑pack that costs $20 and lasts two and a half months. Johnny wants to go to a ball game this week and cannot afford to buy toilet paper he doesn’t need, but staff insists that he buy it anyway. That is managing Johnny. Supporting him would sound like, “It’s getting a little low, but if you think you can make it another week, okay. If you run out, you can always use the facial tissue — you’ve got a couple of boxes.” These simple decisions matter because they teach people how to make big decisions.

Unfortunately, it’s the big decisions that usually get managed. For example, Johnny makes a new friend who also likes going to ball games, and this friend offers to take him. Johnny wants to go alone, but staff say, “We don’t know this guy. It’s too dangerous. We won’t get paid if we aren’t with you.” It becomes all about them — not about supporting the new friendship Johnny has made or increasing his independence from staff.

• Redefine risk: balancing safety with dignity of choice

Instead of shutting it down, supporting Johnny would sound like: “Let’s invite your new friend over for dinner so we can talk about what support he might need to give you during the game. We’d really like to get to know him and make him feel comfortable.” Staff not being paid for being with Johnny should never interfere with a newly formed friendship that could grow into a natural support. This balances dignity of risk with safety. If risk-adverse policies come from the system, or the agency to justify control, they should be challenged.

What Policymakers Can Do

Policy makers could make a real difference if they understood how oppressive many current regulations are for people with developmental disabilities. Too often, they have absorbed stereotypes that make these rules seem appropriate. Loosening or modernizing key regulations would not only improve people’s lives but also save money.

1.  Make MUIs voluntary for competent adults

Changes should include:

– Require consent from competent adults before filing an MUI. 

– Limit MUIs to actual abuse, neglect, or exploitation — not everyday life events. 

– Create a “self‑reported only” category for adults who want full control.

•  Modernize transportation restrictions for I/O Waivers

People should be able to choose who drives them — including neighbors, friends, or natural supports. Current rules force people into agency‑controlled transportation even when it’s not wanted, needed, or safe.

Changes should include:

– Allowing waiver funds to pay any qualified driver the person chooses. 

– Supporting natural relationships without penalizing them. 

– Reducing transportation costs by eliminating unnecessary agency billing. 

– Increasing independence by letting people choose how they get to work, appointments, and social events.

• Require due process in Human Rights Committee decisions

Human Rights Committees can currently remove rights without the person present. This strips adults of due process and reinforces the belief that others know best.

Reforms should include:

– Requiring the person’s presence and consent before rights are removed. 

– Providing plain‑language explanations for any proposed restriction. 

– Basing decisions on facts, not assumptions. 

– Making all restrictions time‑limited, regularly reviewed, and removed when no longer necessary.

• Simplify ISP rules for competent adults

ISPs are long, burdensome documents that rarely guide real life. For competent adults, they function mainly as liability protection, not support.

Reforms should include:

– Eliminating unnecessary sections that exist only for paperwork compliance. 

– Allowing competent adults to define their own routines. 

– Shortening ISPs to highlight only what the person actually wants and needs. 

– Shifting SSAs from document‑writing to actual support. 

– Ensuring providers follow the person’s real‑time choices, not outdated paperwork.

These are the strategies to be used if it’s discovered that the system knows full well that people with developmental disabilities who utilize Ohio Medicaid services are not the boss, but are placated to believe that in order for the system to maintain power. In part V, we will discuss what strategies to take when the system fully believes its own lie.