How to Prepare for a CCU Assessment in Illinois

What Happens During the In-Home Visit

When your parent contacts the Illinois Senior HelpLine or a regional Care Coordination Unit to request home care services, the CCU schedules an in-home assessment — a visit by a certified care coordinator who evaluates your parent's functional abilities, living situation, and care needs. The assessment establishes functional eligibility; the financial review determines whether the case is routed to the Community Care Program, the Medicaid Elderly Waiver, or neither.

The assessment is free and is often completed in about 90 minutes. It is the most consequential appointment in the clinical part of the home care application process.

The Determination of Need (DON) Assessment

The care coordinator uses the DON assessment tool — a standardized clinical instrument that evaluates fifteen functional categories and produces a numerical score. Your parent must score at least 29 cumulative points to qualify for any CCP or waiver services.

The fifteen categories fall into two groups:

Activities of Daily Living (ADLs) — 6 categories: Eating, bathing, grooming, dressing, transferring (moving between bed, chair, toilet), and continence management.

Instrumental Activities of Daily Living (IADLs) — 9 categories: Meal preparation, money management, telephoning, routine health tasks (taking medications), special health tasks (wound care, injections), traveling outside the home, laundry, housework, and the ability to be left alone safely.

Each category is scored on two parallel scales:

• Part A — Level of Impairment: 0 (fully independent) to 3 (completely dependent, requiring another person to perform the entire task)
• Part B — Unmet Need: 0 (need fully met by existing family or community support) to 3 (need completely unmet, creating an immediate safety risk)

The formula: Total DON = sum of all Part A scores + sum of all Part B scores + cognitive adjustment.

The 29-Point Minimum

Twenty-nine points is the eligibility floor. Below it, no CCP services. Above it, the score determines how much service your parent is authorized to receive — higher scores qualify for more weekly homemaker hours and a larger Service Cost Maximum.

Most families do not realize that Part B (unmet need) matters as much as Part A (impairment). A parent who struggles with bathing (Part A score of 2) but has a family member helping every day (Part B score of 0) generates far fewer total points than one who struggles with bathing and has nobody available to help (Part B score of 3).

This is critical: be honest about what is not being covered. If you are the sole caregiver and you cannot be there every day, that unmet need drives up the Part B scores across multiple categories and pushes the total toward eligibility.

The MMSE Cognitive Adjustment — 10 Extra Points

Illinois Administrative Code Title 89 Section 240.715 provides an automatic 10-point boost to the Part A impairment score if either of these conditions is met:

1. Your parent has a formal medical diagnosis of Alzheimer's disease, organic brain syndrome, or another form of dementia, certified in writing by an Illinois-licensed physician or psychiatrist
2. Your parent scores 20 or lower on the cognitive screening portion of the DON assessment (which uses elements modeled on the Mini-Mental State Examination)

These 10 points are added to the Part A total before the combined DON score is calculated. For a parent with moderate physical limitations who might otherwise score in the low 20s, a documented dementia diagnosis can push the total past the 29-point threshold.

What to bring: If your parent has been diagnosed with any cognitive condition, bring the physician's written diagnosis to the CCU assessment. The care coordinator can request records independently, but having documentation in hand prevents delays.

What the Case Manager Observes

The DON is not a written test your parent fills out. The care coordinator observes, asks questions, and scores based on demonstrated ability. During the visit, the coordinator will:

• Watch your parent walk across a room, stand from a chair, and navigate stairs
• Ask your parent to describe how they prepare a meal, manage medications, and handle finances
• Ask your parent to recall today's date, the current president, and perform simple calculations
• Inspect the home for safety hazards — loose rugs, poor lighting, lack of grab bars, cluttered pathways
• Interview you (or any family members present) about how much help you currently provide and what gaps exist

How to Prepare

Do not coach your parent to perform above their actual ability. Families sometimes instinctively encourage a parent to "do well" during the assessment, not realizing that a strong performance produces a low DON score and fewer authorized services. The assessment needs to reflect a typical day, not a best-case demonstration.

Document the bad days. Before the visit, keep a brief log for one to two weeks: days your parent forgot medications, left the stove on, fell or nearly fell, could not dress without help, or was unable to prepare a meal. Share this with the care coordinator. The assessment captures a single snapshot — your log provides context for patterns the coordinator cannot observe in 90 minutes.

Have medical records ready. Current medication list, recent hospital discharge summaries, physician diagnoses (especially cognitive conditions), and therapy records. The care coordinator uses these to verify impairments and apply the correct adjustments.

Be present for the assessment. The coordinator will ask you directly about caregiving gaps — which tasks you handle, how often you are available, and what happens when you are not there. Your answers shape the Part B (unmet need) scores.

After the Assessment

The care coordinator calculates the DON score and communicates the result after the assessment. If the score is 29 or above, the next step is the financial eligibility review — the coordinator verifies that non-exempt assets are at or below $17,500 and routes your parent to either CCP (state-funded, no income cap) or the Medicaid Elderly Waiver (income at or below $1,330/month).

If the score falls below 29, you can request a reassessment if your parent's condition changes or if you believe the initial evaluation did not accurately capture their functional limitations.

The Illinois home care guide includes a DON assessment preparation checklist, a pre-visit daily function log template, and the complete document-gathering worksheet for both the clinical and financial reviews.

See more Illinois guides →