Determination of Need Assessment Illinois: How the DON Score Works

The Determination of Need assessment is the single evaluation that decides whether your parent qualifies for state-subsidized home care in Illinois — and how many hours they receive. A score of 29 or higher opens access to the Community Care Program and the Medicaid Persons who are Elderly waiver. Below 29, your family pays entirely out of pocket.

For dementia families, the DON score is especially consequential because cognitive decline doesn't always show up the way physical limitations do. Understanding how the scoring works helps you prepare accurately — not to game the system, but to ensure the assessor sees the full picture of your parent's daily reality.

How the DON Assessment Works

The DON is administered by a care coordinator from your regional Care Coordination Unit (CCU). It's conducted in your parent's home, takes approximately 60–90 minutes, and evaluates 15 activities of daily living across two dimensions:

Column A: Impairment Level — measures how much physical or cognitive assistance your parent needs for each task.

• 0 = Fully independent
• 1 = Needs minimal assistance
• 2 = Needs moderate assistance
• 3 = Completely dependent

Column B: Unmet Need — measures how much of that need is currently going unmet (not being covered by family, community, or paid help).

• 0 = No risk; need is fully met
• 1 = Low risk; need met most of the time
• 2 = Moderate risk; need met some of the time
• 3 = High risk; danger to safety or health

The combined score across all 15 tasks determines eligibility and service authorization. The minimum qualifying score is 29 points.

The 15 Tasks Evaluated

The DON covers:

1. Bathing
2. Dressing
3. Grooming/hygiene
4. Eating/feeding
5. Toileting
6. Transferring (bed to chair, etc.)
7. Mobility/ambulation
8. Meal preparation
9. Housework
10. Laundry
11. Shopping/errands
12. Money management
13. Medication management
14. Telephone use
15. Transportation

For dementia specifically, tasks 12–15 are where cognitive decline shows up most clearly. A parent who can still walk and dress themselves may score low on physical ADLs but high on money management, medication management, and transportation — areas where confusion, poor judgment, and memory loss create genuine safety risks.

Why Dementia Families Get Under-Scored

The most common problem: your parent performs well during the 60-minute assessment because they're alert, socially engaged, and trying to impress the assessor. This is called "showtiming" — a well-documented phenomenon in early-to-moderate dementia where patients present far better in short social interactions than they function during actual daily life.

The result is a Column A score that reflects the assessment hour, not the other 23 hours. Meanwhile, Column B may also score low if the assessor sees that family members are currently meeting all needs — even if that caregiving is unsustainable.

How to Prepare for an Accurate Assessment

You cannot be present during the actual assessment (the CCU evaluates the senior independently), but you can provide context before and after:

Before the visit:

• Keep a 2-week incident log: wandering episodes, missed medications, burned food, confusion with finances, falls, getting lost
• Document any emergency events (calling 911, leaving the stove on, leaving the house at night)
• Note which tasks require verbal prompting versus physical assistance

During the visit:

• Request to speak with the assessor separately (before or after they evaluate your parent)
• Share specific examples of unsafe behaviors the assessor won't observe in 60 minutes
• Provide the incident log and any emergency room records

After the assessment:

• Ask for the preliminary score before the assessor leaves
• If the score falls below 29, ask specifically which tasks scored 0 or 1 and whether your supplemental documentation was factored in
• You have the right to request a reassessment if circumstances change

What the Score Determines

Your parent's DON score doesn't just qualify or disqualify — it sets the volume of services:

• 29–39 points: Qualifies for basic home care (typically 10–20 hours per month)
• 40–59 points: Moderate care package (20–40 hours per month)
• 60+ points: High-acuity services (40+ hours, may indicate nursing facility level of care)

Higher scores also open access to additional services like adult day programs, home modifications, and emergency response systems. The score directly correlates to your parent's authorized service plan.

Requesting the Assessment

Contact your regional CCU through the Illinois Senior HelpLine (1-800-252-8966). The initial intake and DON evaluation are scheduled within 30 days of the request and cost nothing — it's a state-funded service.

The Illinois Dementia & Memory Care Guide includes a DON assessment preparation worksheet, a 2-week incident log template, and talking points for the pre-assessment conversation with the CCU coordinator — designed specifically for cognitive impairment cases where showtiming is likely to mask the true severity of daily care needs.

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