A couple of updates to pass along: last week I received a letter stating the previous adverse actions were being Voided and her medical status would remain non-spend down. This week I received another adverse action placing her back on spend down beginning 10/1. So I guess they are voiding their void?.. I will send another appeal and request for a fair hearing. I also contacted MO protection & advocacy and they are out of funding.

Below is a copy of my appeal request letter, please provide any suggestions or feedback. I am planning on turning it in to my local office on Friday, 09/18/2026 REQUEST FOR APPEAL, FAIR HEARING, IMMEDIATE RECONSIDERATION, AND NON-SPEND DOWN MEDICAID ELIGIBILITY REVIEW Participant: Date of Birth: DCN: Date: 09/18/2026 To the Missouri Department of Social Services / Family Support Division: I am requesting an appeal, fair hearing, and immediate reconsideration of the determination changing Baileigh's MO HealthNet coverage from Non-Spend Down to a monthly Spend Down of $366. I am also requesting a specific review of Baileigh's eligibility under the federal Medicaid protection for certain Disabled Adult Children (DAC) who lose Supplemental Security Income (SSI) because of entitlement to Social Security benefits based on a parent's earnings record. Basis for Request Baileigh was receiving SSI immediately before her DAC benefits began. Baileigh's disability began before age 22. Baileigh became entitled to Disabled Adult Child benefits based on a parent's Social Security record. Baileigh lost or had her SSI eligibility reduced because of her entitlement to DAC benefits. Her current DAC benefit is $1,517 per month. The central issue in this appeal is whether Baileigh's DAC income was counted in a manner inconsistent with the federal Medicaid protection for certain Disabled Adult Children. The federal Disabled Adult Child Medicaid protection is found at 42 U.S.C. § 1383c(c). I request that the Department specifically determine whether Baileigh qualifies for this protection and whether her DAC income was counted in determining her eligibility for MOHealthNet and her $366 spend Down. Specific Requests 1. Full DAC Eligibility Review Make a specific determination regarding whether Baileigh qualifies for the federal Disabled Adult Child Medicaid protection under 42 U.S.C. § 1383c(c). 2. Written Explanation Because this determination directly affects access to essential health coverage, provide a clear written explanation of the factual findings, income calculations, legal authority, and policy basis used to support the Spend Down determination. The explanation should state whether the DAC protection was considered; whether Baileigh meets the requirements; if not, the exact reason; and the specific federal and Missouri authority relied upon.

It shouldn’t be a disability determination issue she has received SSI since birth; she has Down Syndrome along with a host of other physical impairments as a result.

She is 28. I am sure the bureaucratic stuff is a tall stack! I work for the State of Missouri so I am too familiar with government bureaucratic stuff. Sadly her VA DIC claim is probably going to take even longer! My husband passed in March and the VA DIC claim is in only step 2…no telling how long it’ll take. Sadly if losing him wasn’t enough to deal with my income has also now decreased by about $5k a month.