The instrument matters
When Measuring Need Isn’t the Same as Meeting Need
Across disability and Medicaid systems, there is a growing movement toward standardization.
Standardized assessments.
Standardized service plans.
Standardized support levels.
Standardized methods for determining funding and provider reimbursement.
There are good reasons for this.
Standardization can reduce differences between counties and reviewers. It can improve consistency. It can create common language and potentially make decisions more equitable.
Ohio’s Department of Developmental Disabilities is currently undergoing such a transition.
DODD is implementing interRAI assessments for people enrolled in its Individual Options, Level One, and SELF waivers. Adults will receive the interRAI Intellectual Disability (interRAI-ID) assessment, while children will receive the ChYMH-DD.
https://dodd.ohio.gov/about-us/Waiver_Redesign/Waiver+Modernization/interrai-assessment
The results will eventually help Ohio establish new support levels, guide service planning, and help determine provider reimbursement.
InterRAI is not an obscure organization.
It is an international collaborative whose assessment systems have been developed and used across many countries and healthcare settings.
That history matters.
But another question matters too:
Is the particular assessment being used capable of accurately representing every population whose needs will be translated through it?
Those are not the same question.
The instrument matters
InterRAI is actually a family of assessment instruments.
Different instruments have been developed for different populations and settings.
Ohio has selected the interRAI-ID for adults participating in DODD waivers.
That makes sense for many people within the developmental-disability system.
But there is another population worth considering.
Individuals who may qualify for and receive services through the developmental-disability system but whose primary support needs are not intellectual or cognitive.
Some are:
cognitively intact.
Highly self-directed.
Medically complex.
Technology dependent.
Profoundly physically disabled.
They may understand their medical care better than many people encountering them professionally.
They may recognize subtle physiologic changes before a monitor detects them.
They may know exactly what intervention is required.
Their challenge isn’t necessarily deciding what needs to happen.
Their challenge is physically doing it.
That creates an important distinction:
Self-direction is not self-execution.
Strength should never accidentally become evidence of lesser need
Imagine two individuals.
One needs another person to determine what medical intervention is necessary and physically perform it.
The other knows precisely what is required and directs another person to physically perform it.
The second person may demonstrate substantially greater cognitive independence.
But both may require extensive hands-on assistance.
A well-designed assessment must preserve both truths:
This person is highly capable.
AND
This person requires extraordinary support.
Those statements are not contradictory.
Yet standardized systems must be carefully designed so that strengths in one domain do not unintentionally obscure profound needs in another.
Then there is the question of the outlier
No standardized assessment can perfectly capture every human being.
DODD acknowledges that there will be individuals who are outliers and that due-process protections will exist.
That’s important.
But it raises another question:
How will the system recognize that someone is an outlier if the assessment itself is the mechanism being used to characterize the person?
Suppose an assessment underestimates someone’s medical complexity.
The assessment doesn’t know that.
It simply generates its result.
If the assessor does not possess the specialized medical knowledge necessary to recognize what was missed, that person may not recognize it either.
So what independent reference point asks:
“Does this result actually make sense for this person?”
That question becomes particularly important when assessment results influence support levels, services or funding.
Due process is an essential protection.
But due process occurs because there is disagreement with a decision.
It is not the same thing as getting the assessment right in the first place.
And if the primary safeguard is an appeal after an inaccurate determination, something else happens.
The burden moves.
The individual or family may now have to:
gather medical documentation,
contact specialists,
explain unusual physiology,
educate reviewers,
understand administrative rules,
challenge the determination,
and navigate an appeal.
That carries a cost.
Not merely a financial cost.
A human cost.
A time cost.
An emotional cost.
And an opportunity cost.
Administrative burden doesn’t disappear simply because government isn’t paying for it. Sometimes the cost is transferred to the person being served.
And administrative complexity does not fall equally.
It falls hardest on people least able to correct the system when the system gets them wrong.
Meanwhile, another crisis is growing
The provider shortage.
This is where I believe the conversation about assessment must become larger.
We can become extraordinarily sophisticated at calculating how much support someone needs.
We can develop better algorithms.
Better assessments.
Better scoring systems.
Better support levels.
But after all of that work, someone still has to walk through the front door and provide the support.
And increasingly, finding that person is extraordinarily difficult.
Which creates a strange contradiction:
We can become increasingly precise about measuring need while becoming increasingly unable to meet it.
That should concern all of us.
And availability isn’t enough
For medically complex individuals, simply finding a licensed provider does not necessarily solve the problem.
Licensure is not individualized competency.
A physician is licensed to practice medicine.
That does not make every physician competent to perform neurosurgery.
An RN has substantial education and professional qualifications.
That does not make every RN competent in every highly specialized clinical situation.
The more unusual the medical complexity, the more important individualized competency becomes.
So there are really three different questions:
Authorization: What service is the person permitted to receive?
Licensure: Who is legally permitted to provide it?
Competency: Can this particular provider safely support this particular person?
Those questions should never be confused.
Which brings us back to the purpose of modernization
Modernization should absolutely improve our ability to understand need.
But measuring need is only the beginning.
The ultimate test is whether the system can translate identified need into:
safe support,
competent support,
available support,
individualized support,
and ultimately…
a person’s ability to live the life they choose.
That is why I believe the question surrounding assessment reform is larger than:
“Is this a good assessment?”
The better question may be:
Does the entire system—from assessment to authorization to workforce to implementation—accurately recognize the person and reliably deliver the support that person actually needs?
Because the success of a support system should not be measured by how precisely it calculates need.
It should be measured by how reliably it converts identified need into safe, competent, available support.
Standardization may help us measure.
But people don’t live inside assessments.
They live in homes.
In communities.
In families.
In relationships.
In bodies that don’t always behave according to standardized expectations.
And ultimately, the goal isn’t simply to measure those lives more precisely.
The goal is to support them well enough that they can be lived.
#TheGoalIsLife
#LivingNotJustExisting
#PersonInformed
#HCBS
#Medicaid
#DisabilityAdvocacy
#HomeCare
#ComplexCare
#OneNuggetAtATime
Comments