At End Ohio’s Parent Penalty, we believe that families should have a say in policies that affect people with profound disabilities. Decisions made in secret—without input from those who have to live with these policies every day—are unfair and even harmful. We stand for fairness, transparency, and the goal of ensuring that family caregivers have a seat at the table. Policies work best when they include the voices of the people they impact most.
By shining a light on Ohio’s public records, we have uncovered numerous instances where decisions were made behind closed doors, leading to poor results for people with developmental disabilities and their family caregivers. These incidents show why transparency and accountability in policymaking are non-negotiable. Below are some of the most important stories we’ve brought to light using Ohio’s Sunshine Laws to gain access to public records:
1. The Ohio Association of County Boards (OACB) Lobbied to Ban Parent Caregivers
We uncovered that lobbyist organization Ohio Association of County Boards (OACB) tried to convince ODM and DODD to ban parents from being hired as direct care workers for their children with disabilities. The OACB’s letter implies that county boards can save millions of dollars by granting waivers to minor children, approving the children for a certain number of care hours, and then arranging it so there are no direct service professionals to fill those hours, causing the waivers to go largely unused. (Because family caregivers and strangers earn the exact same wages, the only way to “save” money by banning family caregivers is for the authorized hours to go unused.) Our exposure of this shameful scheme gave families a chance to fight back, all thanks to public records.
2. The Ohio Association of County Boards Lobbied Against the Behavioral Exemption for Ohio Shared Living
In another blow to family caregivers, the OACB lobbied against granting an exemption from the low, round-the-clock Ohio Shared Living daily rate for people who have the behavioral add-on. This callous move would have kept families dealing with complex behavioral challenges working 24/7/365, with no way to access 2:1 care if needed. Thanks to our public records request, we were able to bring this to the attention of Ohio Shared Living families across the state and mount a letter-writing campaign to restore the much-needed behavioral exemption before the rule was finalized. This was a big win thanks to public records!
Here's the OACB's lobbying effort:
3. The Arc of Ohio Put Business First, Advocacy Second
Through public records, we learned that The Arc of Ohio—an organization originally founded to support people with developmental disabilities—was given editing power over a critical DODD guidance document regarding parents of minors. The Arc of Ohio primarily used this opportunity to insist on edits that would benefit its own care agency business, following up with multiple emails to make sure the edits were made. This appalling conflict of interest underscores the need for transparency and public accountability in the policymaking process. When the only “seat at the table” for family caregivers is handed over to an agency company, that’s a big problem. We would never know how this sausage was made without public records, which also revealed that The Arc of Ohio receives 94% of its funding as a Medicaid provider, making it almost fully financially dependent on the very organization it is supposed to be challenging. Read the full report here:
4. DODD Pushes for Severe Restrictions on Doctor-Prescribed, Medically Necessary Devices
Public records revealed a shocking lack of diligence involved in the drafting of DODD’s dangerous and reckless guidance regarding medically necessary safety beds. Several bureaucrats collaborated to publish a truly unhinged “alert” that contained bizarre suggestions such as replacing medically necessary equipment with “Lowering the volume on the TV.” Public records revealed this team of bureaucrats did not consult with any medical professionals, experts, families, or advocacy groups in the drafting of this disturbing guidance. The only source they could cite to back up their outlandish claim was a 20-year-old defunct web page they found on the Wayback Machine internet archive. This is a prime example of the real harm that can occur when unelected lifetime bureaucrats are given free rein to legislate through “guidance,” with no public input, no consultation with medical experts, and no transparency. At least Ohio’s Sunshine Laws took care of the transparency problem.
5. Ohio’s Waiver Allocations Reveal Possible Age Discrimination
Public records have also revealed significant disparities in how Ohio allocates waivers for people with developmental disabilities. Despite children making up about 22% of the population, the proportion of waivers allocated to children has decreased over time to under 7%. Between 2021 and 2024, minor children lost 116 waivers while individuals over 18 gained 1,946 waivers. This trend raises serious questions about the state’s priorities and whether the needs of children with profound disabilities are being adequately addressed. One county board employee suggested that children with disabilities are living too long these days, making them undesirable to county boards because their care costs will go on for a longer amount of time:
“There’s a lot of counties that don’t give any waivers to kids under the age of eighteen no matter what… When you [the county board of DD] get a waiver, you have to look at how will you sustain that waiver for the rest of their lives… So a lot of counties can’t sustain that. They can’t guarantee that they can have this kid—especially people with medical issues are living so much longer, that you no longer have the people with Down Syndrome passing away before 50. They’re living to 75, 80.”
Because we have access to these public records, we can better advocate for support for people with disabilities at every stage of life.
Policymaking Can’t Happen in the Shadows
Our message is simple: Bureaucrats, lobbyists, and profiteers can’t create or influence disability policy behind the scenes without everyone knowing. Taxpayer-funded government employees can’t walk into a room of 200+ people and mock disability families as “greedy,” “lazy,” and “mental” without ending up on the evening news. A large team of families and advocates is watching closely, asking questions, and demanding answers. We will continue to expose smarmy lobbying, shameful conflicts of interest, and shoddy governing so we can fight for a care system that prioritizes the needs of people with developmental disabilities and their family caregivers—not the interests of bureaucrats, lobbyists, or profiteers.
Transparency is not optional. We encourage all families and advocates to join us sharing public records with the public.
Take Action: If you believe people with disabilities have the right to government transparency and you want to stay up to date on the latest news in Ohio’s disability system, enter your email at the bottom of this page where it says “Subscribe to Our Mailing List” to subscribe to our free email alerts.
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