Does DODD’s Switch to the interRAI Test Violate the Ohio Disability Bill of Rights?

If you or a loved one receives waiver services through DODD (Level 1, SELF, or IO waiver), this deserves your serious attention. DODD is replacing the publicly available ODDP test with the private interRAI test. This change may conflict with the rights guaranteed under Ohio Revised Code § 5123.62 (the “Disability Bill of Rights”).

What the Disability Bill of Rights Says:

Under Ohio law every person with developmental disabilities has the following right:

“The right to refuse to participate in medical, psychological, or other research or experiments.” ORC § 5123.62(X).

In other words, if you live in Ohio and have a developmental disability, you have the right not to be forced to participate in research. You can say no.

What interRAI Says:

The interRAI organization (the seller of the new test) says:

The license to use interRAI tests “requires the sharing of fully-deidentified data with interRAI solely for research purposes.”

In other words, when DODD purchases this test, they must send interRAI all the data from the assessments (with names removed) so interRAI can use this data for research.

What DODD Said in a Webinar

In a recent DODD webinar, we asked how Ohioans can opt out of participating in this research, since we all have the right to say “no” to research participation under ORC § 5123.62(X). DODD employee Janet Stephan answered:

In other words, DODD admits it will send your data to interRAI to be used in research but insists this does not count as “research participation” because your name will be removed. As a result, DODD says Ohioans cannot refuse to be part of the research. All 43,922 Ohioans receiving IO, SELF, or Level 1 waivers will automatically become human subjects in interRAI’s research database. We are also not allowed to know what questions are on the test or how our data will be used.

Why This Appears to Conflict With Ohio Law

Putting these pieces together:

• You will have to take the interRAI test to receive Level 1, SELF, or IO waiver services.

• The data from your answers and home assessment will be sent to interRAI and used for research.

• You cannot opt out of having your data used for research.

• ORC § 5123.62(X) gives you the right to refuse participation in research.

• DODD claims this doesn’t count as “participating in research” because it removes your name first.

• The federal government defines research in 45 CFR § 46.102(l) as “a systematic investigation … designed to develop or contribute to generalizable knowledge.”

• interRAI's research clearly fits that definition. Removing your name does not erase your participation.

Therefore, requiring Ohioans to take part in interRAI’s research as a condition of Medicaid waiver services appears to violate ORC § 5123.62(X).

The state’s claim that this doesn’t count as “participating in research” goes against both federal definitions and long-standing human subjects research ethics.

What About Other States Like Nebraska?

In the same webinar, DODD mentioned that Nebraska uses the interRAI test. Nebraska does not appear to have a law protecting people with developmental disabilities from being required to participate in “medical, psychological, or other research or experiments.”

As far as we can tell, Ohio provides stronger protection against being used as a research subject in exchange for public benefits than Nebraska does.

Bottom Line

Ohioans with developmental disabilities have the right to say “no” to participating in research.