1-Minute Action: Send interRAI Comments

Here's a way to speak up for the rights of people with developmental disabilities, and it only takes one minute to participate!

The Ohio Dept. of Developmental Disabilities is proposing changes to the administrative code that would require all waiver recipients - that's everyone with a Level One, SELF, or Individual Options waiver - to take a test called interRAI. This change is not in the Ohio Administrative Code yet, but families are reporting that testing as already begun.

The public hearing about interRAI is May 18, 2026 at 10 a.m., but you don't have to attend in person. You can send comments by email. We have written a suggested comment that you can use, or you can write your own comment.

How to Comment:

1. Open up a blank email. In the "to" line, put: becky.phillips@dodd.ohio.gov

2. In the subject line, put: "Comments on  OAC 5123-9-06 and OAC 5123-9-40"

3. Type your comment and sign your name, or copy/paste our suggested comment below (add your name).

4. Remember not to include personal, private health information about yourself or your loved one, as this is a public comment.

5. Send your email before Monday, May 18, 2026 (or right now, so you don't forget!)

Suggested Comment Below:

To Whom it May Concern:

The following comment regards the drafts of OAC 5123-9-06 (IO and Level 1 waivers) and OAC 5123-9-40 (SELF waiver):

I oppose the mandatory implementation of the proprietary interRAI assessment in Ohio’s developmental disability waiver system until substantial privacy, transparency, and ethical safeguards are added. I strongly support fair assessments and responsible planning tools, but mandatory participation must include adequate protections.

Under the proposed rules, all individuals enrolled in the Individual Options, Level 1, and SELF waivers “will participate” in interRAI assessments. That means participation is compulsory for people who depend on Medicaid home and community based services. Because participation is mandatory, the state has a heightened obligation to ensure transparency, fairness, privacy, and due process. As drafted, OAC 5123-9-06 and OAC 5123-9-40 do not provide these protections.

First, people with developmental disabilities should never have essential Medicaid services tied to a private proprietary test they cannot fully inspect. The current Ohio Developmental Disabilities Profile (ODDP), which remains the IO waiver funding tool for now, is publicly available. Individuals and their families can review the questions, understand the scoring process, and challenge any errors through the appeal process. That transparency allows individuals and families to verify that decisions affecting critical services are accurate.

In contrast, interRAI is a proprietary instrument. Individuals and families must purchase their own copy with their own funds if they want to see what is on the test before they take it. More importantly, the scoring algorithm is not public. When Ohio eventually replaces the ODDP funding tool with interRAI, the state would be moving from a fully transparent scoring system to a closed, private one. That would be a major step backward for due process rights. A person cannot meaningfully exercise due process rights to challenge a service reduction when the scoring methodology underlying that reduction is the proprietary asset of a private organization.

Second, Ohio should address serious concerns regarding research and data use. DODD has stated that disabled Ohioans’ de-identified data will be sent to interRAI for research purposes. DODD has argued that as long as names are removed, this no longer counts as “research” involving Ohioans with disabilities. However, human subjects research almost always uses de-identified or coded datasets. Removing names may reduce privacy risks, but it does not automatically erase the fact that developmentally disabled Ohioans’ extremely private and personal data is being used for an outside organization’s research. ORC 5123.62 guarantees that individuals with developmental disabilities have: “The right to refuse to participate in medical, psychological, or other research or experiments.” The proposed rules violate this right because there is no way to opt out of having one’s data used for research.

If data gathered through mandatory participation is sent to interRAI for research use, Ohioans with developmental disabilities deserve clear notice, meaningful consent options, and the ability to opt out. The right to refuse to participate in research does not disappear simply because the individual’s name has been removed. The right guaranteed by ORC 5123.62 is the right to refuse participation in research altogether, not merely the right to have one's name removed from data collected through compelled participation. De-identification is a necessary privacy protection, but it cannot be a substitute for informed consent to participate.

Third, the rules must include explicit protections for appeals and records access. At minimum, individuals should receive access to scoring algorithms used by the state and a clear correction process for factual errors.

Ohioans with developmental disabilities deserve assessments that are fair, transparent, and accountable, and the state guarantees Ohioans the right to refuse to participate in research. Ohio should pause interRAI implementation until transparency, consent, privacy, and due process protections are firmly in place.

Sincerely,

[YOUR NAME]