Dementia Care Plan Checklist for Missouri Families

The Four Phases Every Missouri Family Navigates

A dementia diagnosis sets a clock running on decisions that need to happen in a specific order. Tackle them out of sequence — filing for Medicaid before establishing legal authority, or choosing a facility before understanding what the state will cover — and families lose months and thousands of dollars. This checklist follows the sequence Missouri's system actually requires.

Phase 1: Legal Authority and Safety (Days 1–30)

This is the window that closes permanently once cognitive capacity drops below the legal threshold.

Execute a Durable Power of Attorney while capacity exists. Under RSMo 404.705, the parent must have a "sound mind" to sign. Both a financial DPOA and a healthcare DPOA are needed. The financial DPOA must explicitly grant authority to make gifts, execute trusts, and alter beneficiary designations — these powers are not implied under Missouri law and a generic DPOA downloaded online almost certainly does not include them. The financial DPOA must be notarized. The healthcare DPOA requires either notarization or two non-related adult witnesses.

Assess cognitive capacity with urgency. If there is any question about whether the parent still has capacity to sign legal documents, get a physician's assessment now, not next month. The legal window can close between one doctor visit and the next.

If capacity is already lost, the family must petition for guardianship and/or conservatorship through the probate division of the circuit court in the parent's county of residence. Filing fees range from $115.50 (Jackson County) to $700 (St. Louis County, including GAL and service deposits). The court will appoint a Guardian ad Litem, schedule a formal hearing, and if a conservatorship is granted, require the conservator to purchase a surety bond. Total costs for contested proceedings: $3,000 to $10,000.

Establish wandering safety measures. If the parent shows any exit-seeking behavior, file a missing person's profile with local law enforcement to enable rapid activation of Missouri's Endangered Silver Advisory system. Prepare a current photograph, physical description, and a list of locations the parent has frequented over the years.

Phase 2: DSDS Assessment and Care Model (Days 30–60)

Submit the HCBS-1 referral form to the Division of Senior and Disability Services. This triggers the clinical assessment process — submit online or email to [email protected].

Prepare for the InterRAI HC assessment. DSDS staff will conduct a face-to-face evaluation in the parent's home. The assessment generates an algorithmic score across twelve categories — cognition, ADLs, behavioral issues, and medical treatments. A score of 18 or higher establishes the required Nursing Facility Level of Care for nursing home Medicaid and waiver screening; financial eligibility and program-specific requirements still apply.

Critical preparation point: document the parent's worst days, not their best ones. Families who underreport because the parent is having a "good cognitive day" during the brief assessment visit often receive scores that fail to establish the level of care needed.

Understand the self-direction gate. If the family is considering Consumer Directed Services (paying their own chosen caregiver through the state), DSDS will administer the SLUMS exam. A score in the "dementia" range (1–20 for high school graduates, 1–19 for those with less education) means the parent cannot self-direct care. The family must then choose between agency-directed in-home services through the Aged and Disabled Waiver or applying for the Structured Family Caregiving Waiver.

Verify facility licensing if transitioning to residential care. Confirm whether the facility holds an ALF or RCF license. Demand the Alzheimer's Special Care Disclosure (Form MO 580-2637) from any facility marketing a memory care program.

Phase 3: Financial Alignment and Medicaid (Days 60–150)

Map the parent's financial position against 2026 thresholds. For a single applicant: countable assets must be at or below $6,220.50, monthly income at or below $1,131 for no-spenddown eligibility. For married couples: the Community Spouse Resource Allowance allows the at-home spouse to retain up to $162,660. The Minimum Monthly Maintenance Needs Allowance ensures the community spouse's income reaches at least $2,705 per month.

Identify any transfers within the 60-month look-back window. Any gifts, property transfers, or below-market-value sales made in the past five years will be scrutinized by the Family Support Division. The penalty formula divides total uncompensated transfers by $8,235 (the 2026 penalty divisor) to calculate a period of Medicaid ineligibility. This penalty does not begin until the parent has entered a licensed nursing facility, met all medical criteria, spent down other assets, and submitted a formal Medicaid application with an eligibility determination — a trap that costs families the full private-pay nursing home rate for the duration of the penalty.

Execute legitimate spend-down strategies. Convert countable assets into exempt resources: purchase an irrevocable pre-need burial contract, make capital improvements to the primary residence (exempt up to $752,000 in equity), upgrade the primary vehicle, or apply the Caregiver Child Exemption if an adult child resided in the home for at least two years immediately before institutionalization and provided care that delayed nursing home placement.

Submit the Medicaid application. File through the FSD Benefit Portal (mydss.mo.gov), by mail, or in person at a local FSD Resource Center. The FSD has 45 days for aged applications and 90 days for disability-based applications to process.

Phase 4: Ongoing Monitoring and Post-Death Planning

Respond to annual redeterminations. FSD sends renewal forms (Form IM-6AR) annually. Return them within 30 days of receipt to prevent automatic benefit closure. If benefits are closed for failure to respond, there is a 90-day grace period to submit documents and reinstate coverage without filing a new application.

Monitor appeal deadlines. If DSDS issues a denial, reduction, or termination of services, the family has 90 calendar days from the action notice to request a fair hearing. To maintain existing services during the appeal, the request must be filed within 10 calendar days of the notice mailing date.

Complete annual HCBS reassessments. Waiver participants must have a face-to-face InterRAI HC reassessment within 365 days of their last level-of-care determination. If the provider or DSDS misses this deadline, services automatically terminate.

Structure post-death asset protections. The Missouri Medicaid Estate Recovery Program can pursue assets passing through both probate and non-probate transfers — beneficiary deeds, joint accounts, and payable-on-death designations are not safe from recovery. However, recovery is barred during the lifetime of a surviving spouse and if there is a surviving child under 21 or a child of any age who is blind or permanently disabled. Under the In re Estate of Shuh ruling, Missouri courts do not allow recovery from the estate of a surviving spouse who never received Medicaid if assets passed outside the recipient's probate estate.

The Missouri Dementia & Memory Care Guide provides fillable worksheets for each phase of this checklist, including the DSDS assessment preparation workbook, Medicaid financial planning calculator, and facility evaluation templates.

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