FAIR HOUSING CHANGE ALLIANCE

For people with epilepsy and other episodic disabilities, one of the hardest problems is not always proving that the disability exists. Sometimes the harder problem is proving what assistance is actually needed when the disability becomes active.

Federal disability regulations expressly recognize this problem. An episodic impairment can qualify as a disability based on how substantially limiting it would be when active. The regulations also recognize that disability cannot be judged simply by looking at whether a person ultimately completed an activity. The condition, manner, duration, effort, pain, and time involved in performing the activity can matter. 

The regulations also recognize something people with chronic conditions learn through experience: people adapt. They use mobility devices, assistive technology, altered routines, environmental changes, extra effort, and learned behavioral or neurological strategies to reduce the visible effects of an impairment. Federal regulations specifically identify “learned behavioral or adaptive neurological modifications” as mitigating measures. 

That creates a practical problem in home-care assessment.

A person may appear independent because that person has learned not to perform certain activities during a bad period. Someone may postpone bathing, shaving, cooking, walking, or other activities until functioning improves. The absence of observed assistance can then be mistaken for the absence of need.

But avoidance is not necessarily independence.

A person who does not attempt an activity because it cannot safely be performed during an active episode may still have a functional limitation associated with that activity.

This becomes particularly important in the Personal Care Attendant system when assistance is described as “anticipatory.”

The legitimate purpose of an anticipatory-care exclusion is understandable. PCA programs are generally designed to pay for actual qualifying assistance, not simply for someone to remain nearby in case something might happen.

The difficult question is what happens when actual hands-on assistance is needed during recurrent but unpredictable periods. That is the stress point now emerging in research concerning epilepsy.

The key distinction is between two very different situations. One is standby supervision: someone remains available because a seizure might occur. The other is actual physical assistance: during an active seizure-related, post-seizure, mobility, toileting, bathing, transfer, or similar episode, the person actually requires hands-on help.

Those two situations should not automatically be treated as the same thing merely because both arise from an unpredictable disability.

The federal disability framework makes that distinction especially important for epilepsy. Epilepsy is expressly identified in federal regulations as an impairment substantially limiting neurological function. And episodic impairments are evaluated based on their limitations when active. 

This raises a narrow but important policy question:

When a person with an episodic disability actually needs hands-on physical assistance during an active episode, is that assistance being evaluated as physical assistance or is it being reclassified as “anticipatory,” “supervision,” or “cueing” because the need is unpredictable, intermittent, or non-daily?

That question is different from demanding that Medicaid create an unlimited on-call benefit.

It asks whether the existing benefit is being administered accurately.

The distinction matters because a person can be physically independent on Monday and physically dependent on Wednesday without either observation being false. Episodic disability requires an assessment system capable of understanding both.

The emerging principle is simple:

Episodic need is not nonexistent need. Avoided activity is not necessarily independent activity.

The next stage of this research is to identify exactly how Massachusetts Medicaid and its contractors define “anticipatory” assistance, what criteria reviewers use, and whether those standards distinguish actual hands-on episodic assistance from standby or supervision.

That is not simply an epilepsy question.

It potentially affects anyone whose functional limitations fluctuate: people with seizure disorders, multiple sclerosis, intermittent neurological conditions, fluctuating mobility impairments, and other episodic disabilities.

The purpose of this work is not to assume discrimination before the evidence is collected.

The purpose is to ask the right question and preserve the evidence necessary to answer it.

Related research: Read Endurance Is Not Independence: What PCA Cuts Miss About Invisible Disability for additional FHCA analysis of functional limitations and personal care assistance.