EDUCATIONAL POST

 When the Assessment Follows the System Instead of the Person

Ohio’s Department of Developmental Disabilities is preparing to replace its current waiver assessment tools with standardized interRAI instruments.

For adults enrolled on the Individual Options, Level One, and SELF waivers, Ohio has selected the interRAI Intellectual Disability assessment.

The assessment will initially help inform person-centered planning. Beginning in a later phase, its results are expected to help shape new support levels, service guidance, and provider reimbursement rates.

Standardization can have benefits.

A consistent assessment may reduce differences among counties, replace outdated homegrown tools, create clearer data, and improve the way some needs are identified.

But standardization also raises an important question:

What happens when the standardized framework does not match the person being assessed?

Not every adult enrolled in Ohio’s developmental-disabilities waiver system has support needs that arise primarily from intellectual disability.

Some individuals are intellectually intact and fully self-directing.

They understand their medical needs.

They communicate clearly.

They make decisions.

They recognize changes in their bodies.

They direct the people assisting them.

Their challenges arise from catastrophic physical injury, profound motor impairment, advanced medical technology, autonomic instability, or complete dependence on other people to physically carry out the decisions they make.(like Alex) 

For these individuals, the central distinction is not independence versus dependence.

It is:

Self-direction versus self-execution.

A person may be entirely capable of deciding what must happen while being physically unable to perform any part of it.

That distinction must be recognized by any assessment used to determine support levels or funding.

Medical questions are not necessarily a medical-acuity assessment

DODD explains that the interRAI-ID includes questions involving health conditions, medications, daily activities, and complex medical needs.

That is important.

But asking medical questions is not the same as conducting a specialized assessment of:

• high-acuity medical risk,
• advanced life-sustaining technology,
• integrated physiologic systems,
• rare clinical presentations,
• low-frequency but catastrophic events,
• or individualized caregiver competency.

An assessment may record that a person uses a ventilator.

But does it capture whether the ventilator is the person’s primary respiratory support or only an adjunct?

Does it understand how the ventilator interacts with diaphragm pacing?

Does it recognize that those technologies may not be interchangeable?

Does it identify subtle autonomic changes that occur before a monitor reflects the problem?

Does it distinguish between routine task completion and the clinical reasoning required to prevent a crisis?

The presence of a checkbox does not guarantee understanding of what the checked box means.

Stability can conceal the support producing it

This concern becomes especially important when assessments use recent lookback periods.

Many standardized tools ask what happened during the past three days, seven days, or another limited period.

That may work well for frequent daily activities such as eating, dressing, bathing, and mobility.

But high-acuity medical needs are not always measured accurately by frequency.

A dangerous respiratory event may occur rarely.

A severe autonomic episode may not happen during the assessment week.

An equipment problem may arise only occasionally.

Yet when one of those events occurs, immediate recognition and highly individualized intervention may be essential.

A low-frequency need is not necessarily a low-importance need.

And the absence of a recent crisis does not establish the absence of need.

It may demonstrate that the person’s needs are being consistently and skillfully met.

If an assessor sees a person who is healthy, stable, communicating, participating in the community, and avoiding hospitalization, the assessment must still identify the work that makes those outcomes possible.

Otherwise, successful support may become evidence used to reduce the very support producing the success.

What happens when a misunderstanding becomes a score?

A human misunderstanding can sometimes be corrected through conversation.

A standardized score may be treated differently.

Once answers are translated into numbers, algorithms, support levels, and reimbursement structures, the result may appear objective.

But the objectivity of the calculation does not guarantee the accuracy of the underlying framework.

When the wrong framework produces a precise score, precision should not be mistaken for accuracy.

That is why the selection of an assessment instrument matters so much.

The question is not simply whether the tool is respected, standardized, or used internationally.

The question is whether it has been validated for the particular population whose needs it will be used to measure.

The assessment should follow the needs

Ohio appears to be selecting the interRAI-ID because adults are enrolled within the developmental-disabilities waiver system.

But administrative placement does not necessarily identify the nature of the person’s needs.

A person may be served within that system while having needs that are primarily:

• medical,
• neurologic,
• respiratory,
• physical,
• technological,
• or related to catastrophic injury.

The system should not begin by asking:

Which assessment belongs to this administrative category?

It should begin by asking:

Which assessment—or combination of assessments—can accurately understand this person?

A standardized tool may be one part of the process.

But when the tool cannot adequately measure a person’s medical acuity or specialized risk, there should be a clear process for obtaining additional clinical assessment before support levels, rates, or authorizations are determined.

The person should not be forced harder into the framework.

The framework should recognize when it has reached the limits of what it was designed to measure.

The question Ohio must answer

Before interRAI results are translated into future support levels and reimbursement rates, Ohio should be able to explain:

How will the interRAI Intellectual Disability assessment accurately evaluate cognitively intact, fully self-directing individuals whose primary needs arise from catastrophic physical injury, advanced medical technology, and highly individualized medical complexity?

And if it cannot fully do so:

What supplemental clinical assessment will fill that gap?

Because person-centered planning cannot be truly person-centered when the assessment follows the system more closely than it follows the person.