Medicaid benefits are required by federal law (Section 1634(c) of the Social Security Act in Title 19, Medicaid) to be continued for persons transitioning from SSI welfare benefits to Disabled Adult Child (DAC) benefits. They are NOT Pickle amendment people but are eligible for continuing Medicaid benefits by a separate section. The cited federal statute applies to both 1634 states and 409b states.

Section 1634(c) of the Social Security Act on Title 19, Medicaid, states:

(c) If any individual who has attained the age of 18 and is receiving benefits under this title on the basis of blindness or a disability which began before he or she attained the age of 22— (1) becomes entitled, on or after the effective date of this subsection, to child’s insurance benefits which are payable under section 202(d) on the basis of such disability or to an increase in the amount of the child’s insurance benefits which are so payable, and 2) ceases to be eligible for benefits under this title [ “DETERMINATIONS OF MEDICAID ELIGIBILITY”] because of such child’s insurance benefits or because of the increase in such child’s insurance benefits, such individual shall be treated for purposes of title XIX as receiving benefits under this title so long as he or she would be eligible for benefits under this title in the absence of such child’s insurance benefits or such increase.

Why is this critically important for disabled adult children? Because of the 24-month waiting period before Medicare kicks in. Losing Medicaid and not having it immediately replaced by Medicare is a potential life-threatening situation. And making disabled individuals who lost SSI but are “deemed eligible” to apply to DCF is burdensome, unnecessary, and wrong. The termination of Medicaid should not happen at all when a DAC adult child goes from SSI to DAC benefits higher than the maximum SSI amount because of actions that SSA should take to maintain SDX eligibility.

Who decides? I used to believe that when Medicaid was improperly denied, it was the state Medicaid agency that was failing to continue benefits.

Here is federal Medicaid’s “implementation notice to states”:

“This eligibility group describes adult children with disabilities under section
1634(c) of the Social Security Act. Section 1634(c) of the Act requires states to
consider childhood disability beneficiaries who lose SSI eligibility as if they were
still SSI recipients for Medicaid purposes so long as they would have remained
otherwise eligible for SSI benefits but for their entitlement to (or increase in)
social security disability benefits on or after July 1, 1987.” To be a “deemed SSI recipient” after receiving DAC approval, it is the responsibility of the federal government through the Social Security Administration to make the decision
that the new DAC recipient is “otherwise eligible for SSI” applying the SSI rules. Most DCF workers do not know the SSI rules for eligibility, nor should they. There are substantial differences between SSI and Medicaid eligibility rules (See my partner Steve Hitchcock’s excellent CLE presentation pointing out all the eligibility differences between SSI and Medicaid ).

SSA currently only generates a notice on the State Data Exchange (SDX) list to add or remove individuals who comprise “Mandatory Medicaid recipients” who get cash SSI benefits that Florida Medicaid has to award or continue the benefits for. When a person goes on SSI benefits, they get state basic Medicaid benefits without even filing an application. I have put thousands of individuals on Florida Medicaid, and I’ve never filled out a Medicaid application. The relevant Florida Statute is 409.903 and subsection (2) which together state:

F.S. 409.903 Mandatory payments for eligible persons.—The agency shall
make payments for medical assistance and related services on behalf of the
following persons who the department, or the Social Security Administration by
contract with the Department of Children and Families, determines to be eligible,
subject to the income, assets, and categorical eligibility tests set forth in federal
and state law…. 2) A person who receives payments from, who is determined eligible for, or who was eligible for but lost cash benefits from the federal program known as the Supplemental Security Income program (SSI).…

The above Florida statute conforms to the Florida Medicaid State Plan filed with the federal government, declaring Florida to be a “1634 state” giving Medicaid to anyone who receives SSI or is deemed to be eligible for SSI but not receiving the SSI check itself. This occurs because when SSA staff assesses “deemed eligibility,” the unearned income in the form of the monthly disability check is NOT counted by Section 1634(c). We used to send parents off with an attached memo to file a Request for Fair Hearing with DCF. Recently, however, we are hearing about DCF Hearing Officers stating that “it’s not our job; you have to go to SSA to have them find you “otherwise eligible for SSI.”

Are they right? Yes! So, where’s the disconnect? It’s the missing button. Research so far indicates that “the button” to add a particular person initially when they get SSI checks to the SSA SDX list appears to be at the SSA Payment Centers who hit the button whenever instructed to send an SSI check of any amount to a particular person. The front end works great. SSI recipients routinely get automatic mandatory Medicaid. And when the local SSA office awards DAC benefits, if the benefits are greater than the allowable SSI eligibility amount, the local SSA sends a notice to the SSA Payment Center (there are several in the U.S.) to stop the Payment Center from sending the SSI check and apparently the SSA Payment Center removes the adult child
from the SDX list. That works also.

When Florida AHCA (the official Florida Medicaid agency) receives notice that a
particular person is not receiving SSI any longer, AHCA generates a notice saying as of X date you are off SSI-related Medicaid because you no longer receive an SSI check. What should happen? Button, button, who’s got the button? At the time that SSA is determining that a parent of a disabled adult child has died, retired, or themselves be disabled (the three triggering events for DAC benefits of 50% or 75% of dad or mom’s SSA check sent to the DAC kid), SSA staff should execute the determination process that the former SSI adult child is or is not a “deemed SSI claimant” to continue on the SDX list without interruption, and not just generate the SDX notice to Florida Medicaid that X person is no longer receiving an SSI check and no longer eligible for mandatory Medicaid. Just don’t send it!

Here’s the “law” on that: POMS SI 01730.010 Determinations of Medicaid Eligibility

  1. Special SSI Status and Medicaid Eligibility
    Certain individuals eligible for special SSI recipient status are eligible for Medicaid although no cash SSI payments are due. Included in this group are certain 1619(b) individuals, those who would be eligible for title XVI but for a title II cost-of-living increase, certain disabled adult children, certain widow(er)s, and certain drug addicts and alcoholics not receiving payment. (See SI 01715.015 for further explanation.)
  2. POMS SI 01715.015 Special Groups of Former SSI Recipients
    A. Background – Categorical Medicaid eligibility for the aged, blind and disabled is directly related to receipt of SSI in most States. Loss of SSI payments can result in loss of Medicaid coverage. To preserve Medicaid coverage for certain groups of individuals who lose SSI payments, Congress enacted special Medicaid continuation provisions. These provisions require the State Medicaid agencies to continue to consider specified groups of former SSI beneficiaries as SSI beneficiaries for Medicaid purposes, as long as they would otherwise be eligible for SSI payments. In addition, Medicaid agencies are required to determine if the individual would be eligible for Medicaid under any other group.
    B. Policy — Continuation Groups
    4. Disabled Adult Children (Childhood Disability Beneficiaries) Section 1634(c) of the Act requires States to consider title II childhood disability beneficiaries (also known as disabled adult children, DACs, or childhood disability beneficiaries, CDBs) who lose SSI eligibility as if they were still SSI recipients for Medicaid purposes so long as they would have remained otherwise eligible for SSI benefits but for their entitlement to (or increase in) title II benefits on or after July 1, 1987. SSA notifies the 1634 States about members of this group through the SDX. Starting on or about May 1995, members of this group in all States will get special Medicaid referral notice paragraphs numbers 1140 and 1141 (NL 00804.110) in their automated Notices of Planned
    Action when:
    • they lose SSI eligibility due to excess income in a month of title II
    • entitlement; and
    • they are at least age 18;
    • andthe SSI computer record reflects title II continuing income with a
    • Beneficiary Identification Code (BIC) of “C”.

I currently have no idea what the last bullet point means. But clearly, SSA staff are directed to notify the 1634 states (Florida Medicaid) about members of the DAC group who are “otherwise eligible for SSI” even though not receiving SSI checks, but who may be “deemed eligible for SSI.” And thus eligible for 409.903(2) status.

So, in the steps above, who at SSA has the button? Who knows? At SSA offices in Orlando, Tampa, Miami, and West Palm Beach, the staff just shrug their shoulders, stating “We know there’s a button, we know SSA should push the button, but we don’t know where it is; possibly the Atlanta Regional Office?”

What are we going to do about it? Using our contacts at NOSSCR (the National Organization of Social Security Claimant Representatives) which is the NAELA of Social Security world formed in 1984 and with over 5,000 members and staff lobbyists in Washington, we contacted them and they agreed to take the matter to their contacts inside the national SSA office to assist us in finding the button.

Our ask to you. NOSSCR’s first question was “Is this a problem with only one SSA office in Florida?” Nope. “Please send us names and Social Security numbers of persons with similar problems in Florida. If you have a recent client who has received DAC benefits but lost Medicaid who were “otherwise eligible” and the client allows you to add his or her name to our list, please let me know so we can include them in our correspondence to SSA. Email me at