Social Security Disability Insurance (SSDI) is a federal program that typically provides cash stipends to people who have paid into the Social Security system and who can’t work because of a disability. (In some cases, it is possible to receive SSDI even if you haven’t worked.) In most cases, when someone has been eligible for SSDI benefits for two years, they also receive Medicare, even if they are under age 65.

From a special needs planning perspective, SSDI benefits are fairly easy to deal with because the program does not have an asset limit or a restriction on unearned income, like interest or dividends. This means that a millionaire who meets the program’s requirements can receive SSDI benefits alongside a completely impoverished person.

It also means that from a purely financial perspective, a person with considerable resources doesn’t need to shelter their assets in a special needs trust to qualify for SSDI benefits as they would have to do if they were receiving needs-based government benefits such as Medicaid or Supplemental Security Income (SSI).

However, this does not mean that people with disabilities who receive SSDI benefits should not consider special needs trusts.

What Is a Special Needs Trust?

A special needs trust (SNT) is a legal arrangement that allows individuals with disabilities to receive financial support without jeopardizing their eligibility for public benefits. (Some attorneys refer to special needs trusts as supplemental needs trusts.) The trust holds assets and funds for the benefit of the person with the disability. Because the assets do not technically belong to the beneficiary, but to the trust, the individual can access necessary services and care while still qualifying for programs like SSI and Medicaid.

Why Consider a Special Needs Trust?

The benefits of having a special needs trust can go far beyond one’s ability to remain eligible for SSI or Medicaid.

For instance, it can help manage additional funds that a person with a disability may need for medical expenses, therapy, or other essential services that go beyond what SSDI covers. This way, individuals can enhance their quality of life without risking certain other public benefits.

In another scenario, a person with a mental health condition may be unable to manage money. An SNT would allow a qualified trustee to invest and spend that person’s funds properly.

Other people with special needs may be able to handle their personal finances but perhaps live in a setting where they could be susceptible to mistreatment by others. In this situation, a special needs trust would provide an appropriate buffer between the beneficiary and individuals who might otherwise take advantage of them.

A special needs trust can be tailored to meet the unique needs of the beneficiary. It can be funded with various assets, including cash, property, or investments. This flexibility allows people with disabilities to maintain their independence and dignity while receiving the support they need.

In addition, SNTs that hold inherited retirement accounts can now name charities as remainder beneficiaries. So, funds that remain in the special needs trust following the death of the beneficiary can go on to support a charitable organization.

What If You Need SSI or Medicaid Benefits in the Future?

In the realm of special needs planning, you never want to take anything for granted. Just because an SSDI beneficiary might not need Medicaid and SSI now, it doesn’t mean they won’t qualify for, or require, services from those programs in the future. For instance, an SSDI beneficiary may rely on private health insurance and Medicare, but if they lose their insurance and Medicare doesn’t cover certain medications, it might be incredibly important for that beneficiary to receive Medicaid, which could make a special needs trust essential.

First-Party Special Needs Trusts

One of the main types of special needs trust is a first-party special needs trust. This type of trust is specifically designed to hold the beneficiary’s own assets. In most of the examples above, this is the type of special needs trust that would be most suitable.

Until late 2016, only a parent, grandparent, guardian or court were allowed to establish a first-party special needs trust for the beneficiary, even if the person with the disability was completely competent to create a trust on their own.

Beyond merely qualifying for government benefits, there are numerous reasons to establish a special needs trust. If you or a loved one receive SSDI and do not have a special needs trust in place, consider consulting with your special needs planner to explore your options.


Emergency Memorandum-24048
—Omitting Food from In-Kind Support and Maintenance Calculations

•              Supplemental Nutrition Assistance Program (SNAP) (aka “food stamps”) will no longer be considered when SSA calculates In-Kind Support and Maintenance (ISM).

•              This EM details the instructions that Field Office (FO) and Regional staff will follow when implementing these changes starting Monday.

  • Over 60 POMS will be revised shortly.

The EM outlines questions that will no longer be asked: 

                Eat all meals out?

                Buys food separately from household?              

And the EM adds in a new question:

Do others within the household pay for or provide you with ALL your meals?

                The addition of the word “all” is a crucial change that should be mindfully considered when answering.

If the SSI beneficiary pays for even one meal on their own, there will be no value of the one-third reduction (VTR) for food.

So be on the lookout for these changed questions, and make sure that your local offices are handling these updates appropriately. Any issues should be escalated to a supervisor and then to the  Regional Communications Director.  In Florida, ours is:

Patti Patterson

Regional Communications Director (AL, FL, GA, KY, MS, NC, SC, TN)

Atlanta Federal Center

61 Forsyth Street, S.W., Ste 23T29

Atlanta, GA 30303

Phone: 404-562-5500

Fax: 833-928-2398

Email: atl.orc.rpa@ssa.gov

POMS SI 01320.141—Deeming: Public Income Maintenance Payments

•              Adds SNAP benefits to the chart of deemed income exclusions.

Of note, remember that today’s EM cites to over 60 POMS that will soon be updated because of the changes that are being implemented on Monday—so be sure to check the POMS Recent Changes page frequently for these updates.

Senators Bob Casey (D-PA) and Eric Schmitt (R-MO) have introduced the Ensuring Nationwide Access to a Better Life Experience (ENABLE) Act. The bipartisan bill seeks to extend three expiring provisions of the Achieving a Better Life Experience (ABLE)program, which allows disabled individuals to invest in tax-advantaged accounts while protecting their eligibility for federal aid programs.

The ENABLE Act would permanently protect ABLE account provisions, set to expire in 2025, that make the program accessible to more people with disabilities and make it easier for them to save.

Background on ABLE Programs

Signed into law in 2014, the ABLE Act, also sponsored by Casey, allows states to establish ABLE accounts.

When Congress passed the ABLE Act, it was hailed as a game-changer for families with special needs.

Generally, an adult with disabilities who has more than $2,000 in countable assets is ineligible for public assistance programs such as Medicaid and Supplemental Security Income (SSI). But the ABLE Act allows disabled individuals and their families to save money in tax-free accounts without losing access to federally funded, means-tested benefits.

·         Up to $100,000 in ABLE account savings will not disqualify an eligible individual from SSI.

·         Any amount of ABLE savings up to the plan limit does not affect eligibility for other federal benefits, including the Supplemental Nutrition and Assistance Program (SNAP) and Medicaid. In some states, ABLE program account owners can save nearly $600,000 without jeopardizing their access to these programs.

While ABLE account contributions are not tax-deductible, their earnings accumulate tax-free. Expenditures for qualifying disability expenses such as housing, transportation, assistive technology, health care, and employment support are also tax-free. All but four states (Idaho, North Dakota, South Dakota, and Wisconsin) have ABLE programs.

Currently, someone must have acquired their disability before age 26 to be eligible for an ABLE account. Thanks to the passage of the ABLE Age Adjustment Act, people who acquired a disability prior to age 46 will become eligible for an ABLE account starting in 2026. This will likely extend ABLE account access to around 6 million more Americans, including over a million veterans.

According to a press release from Casey, he created the original ABLE program to address the intersection of disability and poverty.

Individuals with disabilities are more than twice as likely to live in poverty (25.9 percent) compared with people without disabilities (11.5 percent). However, households with a person whose disability limits their ability to work require 28 percent more income on average to obtain the same living standard as the nondisabled. And disabled people have half the rate of workforce participation as those without disabilities.

Since the creation of the ABLE program, more than 162,000 account holders have saved more than $1.74 billion.

In 2024, an annual combined total of $18,000 can be contributed to an ABLE account by the person who has a disability or by their friends and family, a special needs trust, a pooled trust, or a 529 College Savings Account rollover. This annual contribution limit is pegged to the annual gift tax exclusion.

TCJA Enhancements to ABLE Accounts

The Tax Cuts and Jobs Act (TCJA) of 2017 made significant changes to the U.S. tax code. Many of its provisions are set to expire, or “sunset,” at the end of 2025.

TCJA increased the ABLE account contribution limit for tax years 2018 – 2025 (on par with increases in the annual gift tax exclusion amount). It also made three key changes to ABLE accounts that are scheduled to expire in 2025:

·         ABLE to Work: An employed person with a disability can make additional contributions to their ABLE account that exceed the gift tax exclusion amount up to the lessor of either the prior year’s federal one-person poverty limit ($15,060 in 2024) or their annual compensation.

·         ABLE Saver’s Credit: ABLE account beneficiaries can take a retirement savings contributions credit of up to $1,000 for qualifying ABLE account contributions.

·         529 to ABLE rollover: Families can roll over funds from a 529 education savings account to another family member’s ABLE account. The ABLE account must have the same beneficiary as the 529 account or be for a member of the same family as the 529 account holder.

Proposed Legislation

The bill Casey and Schmitt unveiled in June 2024 would permanently enshrine TCJA changes in the ABLE program.

In addition to Casey and Schmitt, the ENABLE Act has the support of at least 10 senators from across the aisle and the country, including John Boozman (R-AR), Markwayne Mullin (R-OK), Amy Klobuchar (D-MN), Ron Wyden (R-OR), and Tim Kaine (D-VA).

The National Association of State Treasurers and disability advocacy groups like Autism Speaks also endorse the bill. Co-sponsor Schmitt, whose son has autism and epilepsy, launched the ABLE Program in Missouri as the State Treasurer, with his son opening the first account.

“The ENABLE Act is a fantastic bipartisan opportunity to protect access to federal programs for those with disabilities while safeguarding their ability to invest and save,” said Schmitt in a press release.

“I’m grateful to have worked with Senator Schmitt on this new bipartisan bill, which will prevent some key ABLE provisions from expiring and ensure that as many people with disabilities as possible across the country can continue to benefit from opening ABLE accounts,” said Casey.

The ENABLE Act would amend the Internal Revenue Code by removing the sunset provision. As bills go, it is a succinct piece of legislation, running to just over 200 words.

Although still in the initial stage of the legislative process, the bill has been referred to the Committee on Finance Action, where it could benefit from having the support of Finance Committee Chair Ron Wyden.

Track the progress of the ENABLE ACT online.

For adults receiving disability benefits, pursuing a career is often not an option. To receive such benefits, an individual must not be able to engage in “substantial gainful activity.” The federal government defines substantial gainful activity as earning more than $1,550 a month (in 2024) through employment.

However, the Social Security Administration (SSA) does offer several programs to encourage disability benefits recipients to hold a job. The best-known program is Ticket to Work. Although the program is somewhat complicated, it provides people on disability the opportunity to work without losing these benefits.

SSI and Work – To Be Described in a Later Blog Post 

This blog post only highlights working while on SSDI.  There are other state and federal program programs that are for working persons on SSI benefits. One of our clients is working as a computer engineer and making $85,000 per year but still qualifies for the 1619b program to continue his personal care attendants paid by Florida Medicaid. Another client is working and keeping his Medicaid health insurance in a new state program called Working People with Disabilities that allow income of up to 5.5 times that SSI maximum amount, and still maintain Home and Community Based Services.  There are more, and we will highlight them in a future blog post. Contact us if you can’t wait.

Qualifying for SSDI Benefits

A person facing a chronic health condition or a serious injury may need to rely on disability benefits. Social Security Disability Insurance (SSDI) is a federal government assistance program that provides financial support to people with disabilities. Those who qualify have a physical or mental disability that is likely to last more than a year or result in death. As mentioned above, their impairment must also prevent them from engaging in substantial gainful activity.

According to SSA rules, an SSDI recipient (who is not blind) cannot earn more than $1,550 a month (as of 2024) through a job. (A working individual who is blind cannot earn more than $2,590 a month.) This income restriction applies only to income earned by working. An SSDI applicant can receive unearned income from any source other than employment and still qualify for the program.

How much the person’s SSDI benefit will be depends on the following:

  • their income before they became disabled,
  • the size of their family, and
  • the amount they paid into the Social Security system.

SSDI and the Ticket to Work Program

The Ticket to Work program provides individuals receiving disability benefits with an incentive to rejoin the workforce. By taking part, they can earn income and enhance their financial independence without losing their vital monthly SSDI payment. People also have the chance to build skills on the job, improve their standard of living, and enjoy free services such as career counseling.

Through this program, any month in which an SSDI recipient earns more than $1,110 (in 2024) counts as a month of “trial work.” This trial work period helps an individual weigh whether they would ultimately be able to return to the workforce. Over the course of five years, they have nine “trial” months to earn this level of income without losing their SSDI. (The program does not require that these nine months are consecutive.)

Once the individual has had nine months (during the five-year trial work period) in which they earned more than the $1,110 limit, the trial ends. When this happens, the SSDI recipient does not receive an SSDI payment in any month where they make “substantial earnings” of more than $1,550 (in 2024). For three years after their trial period ends, they can immediately regain benefits if they fall below this substantial earnings level and still have a disability.

Adults aged 18 to 64 who receive SSDI are eligible for Ticket to Work, which is entirely voluntary.

Visit the SSA’s Ticket to Work website for details or call the program helpline at 866-968-7842 (TTY 866-833-2967).

A Note on SSDI and Medicare

Some SSDI recipients receive Medicare benefits. Most people become eligible for Medicare when they turn 65. However, this federal health insurance program also assists people younger than 65 who have a long-term disability.

If you qualify for Medicare because you receive SSDI, your Medicare coverage will continue for seven years after your trial work period ends.

SSI and Ticket to Work

Ticket to Work makes transitioning into the workforce a bit less burdensome. SSDI recipients do not have to worry about immediately losing their benefits if they want to work.

Unfortunately, the rules for Supplemental Security Income (SSI) income and asset levels are much stricter. This can make it harder for an SSI recipient to hold a full-time job (even under Ticket to Work) and maintain their benefits.

Learn More

Numerous other programs beyond Ticket to Work are available for people with disabilities interested in seeking employment. These include the PASS program. Keep in mind that some states, including Florida, also offer Medicaid buy-in programs for workers with disabilities.

The rules for most of these programs are often complicated, so be sure to work with your special needs planning attorney. It is always best to advise SSA in advance and in writing via a receipt to later prove SSA received your communication.If you are a parent of a child with a disability, consult with your attorney well before your child turns 18. You may also want to seek out the assistance of local vocational agencies. Together, these resources can offer the best chance for successfully navigating the maze of potential educational and employment opportunities. 


Today, Social Security announced that the cost-of-living adjustment (COLA) for 2025 will be an increase of 2.5%. Beneficiaries will realize the benefits of this increase beginning in January 2025. 

Social Security’s Fact Sheet is a valuable resource for understanding the impact of the COLA increases and we recommend pinning this document to assist you in answering common claimant questions. 

Social Security Disability Insurance(SSDI) and Supplemental Security Income (SSI) are two federaldisability benefits programs that provide monetary assistance for people with disabilities. Both programs allow recipients who work to deduct certain work-related expenses from their countable income. This can make it easier to qualify for benefits or, in the case of SSI, to receive a larger payment.

Who Exactly Qualifies for SSDI and SSI?

You may be able to receive SSDI if you have a qualifying disability that prevents you from working. The Social Security Administration (SSA) sets the definition for what counts as a disability.

You also must have worked a job long enough (or recently enough) to meet the SSA’s requirements for SSDI. In the job you held, you would have had to have paid into the Social Security system, too. (Learn more about how much work history you would need via the SSA website.)

Meanwhile, individuals who are eligible for monthly Supplemental Security Income payments live with a qualifying disability and must have limited resources. The threshold on one’s income is quite strict; in most states, the SSI applicant can’t have more than $2,000 in assets to qualify. SSI payments help the individual cover the costs of such basic needs as food, clothing, and shelter. Receiving SSI also serves as a way to access Medicaid coverage automatically.

SSDI and Substantial Gainful Activity

As mentioned above, to qualify for SSDI, an individual must be “disabled.” Under federal law, this means that the person has a physical or mental impairment that prevents them from working.

The SSA defines work in this context as “substantial gainful activity” (SGA). SGA is work that involves significant physical and/or mental activities for which the individual receives payment or profit. The person’s impairment also must have lasted, or likely will last, for longer than one year or result in death.

If you are working and earning more than $1,550 a month from employment (in 2024), the SSA will say that you are engaging in SGA. So, if a potential SSDI recipient works part time and earns $1,600 a month, the SSA does not consider them disabled. As a result, the individual will not qualify for SSDI benefits. 

Fortunately, an SSDI recipient’s assets and unearned income don’t count against them. So,another person may not be able to work but has $10 million in the bank. Even if this account generates $10,000 a month in interest for them, this person will still qualify for SSDI.That’s because their income does not come from them working.

SSI and Unearned Income

Supplemental Security Income treats income differently. The SSA reduces an SSI recipient’s benefit by 50 cents for every dollar that recipient earns from working. It also reduces their benefit by$1 for every dollar of unearned income they receive.

If the SSI recipient’s award drops to zero as a result of these reductions, they will lose their SSI benefits. This makes SSI a much more restrictive program than SSDI. Unearned incomeharms the SSI recipient, but not the SSDI recipient.

Impairment-Related Work Expenses

If an SSDI or SSI recipient has unreimbursed impairment-related work expenses that allow them to do their job, the SSA will allow them to deduct those expenses from their countable earned income. For an SSDI recipient who may be slightly over the SGA limit, this reduction could allow them to qualify for benefits. For an SSI recipient, the reduction could mean gaining access to SSI or getting increased benefits.

For an expense to qualify as an impairment-related work expense, the person with the disability must pay for it, not any other source(including insurance). Impairment-related work expenses must:

  • be an item or service that allows the individual to work,
  • be necessary because of the person’s impairment, and
  • have a cost that is in line with comparable goods and services.

It does not matter if the individual also uses the item or service in settings other than their workplace.

Some examples of impairment-related work expenses that a working person with a disability can deduct include the following:

  • Attendant services on which the worker relies to get to work or perform theirjob once they arethere
  • Medical devices and non-cosmetic prosthetics often qualify
  • Medications that insurance does not pay for and that control the person’s disabling condition so they can carry out their job
  • Specialized transportation services, but not public transportation

Work With Your Attorney

As is the case with any SSI or SSDI question, it’s best to consult with your special needs planning attorney to determine whether your expenses qualify as impairment-related work expenses.

Today marks a significant transformation for Supplemental Security Income (SSI) beneficiaries as the Social Security Administration (SSA) implements new rules that overhaul how rent subsidies and food assistance are handled. These changes will expand eligibility for SSI, increase monthly benefit amounts for many recipients, and simplify the application and maintenance processes. By removing food from In-kind Support and Maintenance (ISM) calculations and nationalizing the rental subsidy exception, the SSA is breaking down longstanding barriers that have limited access to essential benefits for millions of Americans.

Key Highlights of the New SSI Rules

  • Exclusion of Food from ISM Calculations: Starting today, the SSA will no longer count food provided by SNT Trustees, friends, family, or community support networks as part of ISM. Previously, free food could reduce an SSI beneficiary’s monthly check by the Presumed Maximum Value (PMV) amount of $334.33 in 2024. This removal simplifies the process and helps recipients retain more benefits without fearing reductions due to food assistance.
  • Expanded Rental Subsidy Program: Starting today, the SSA will allow for rental “business arrangements” with SNT Trustees, friends, family, or community support networks of any amount above the PMV amount ($334.33 in 2024). If the SSI recipient pays at least this amount from their SSI check, the payment of rent by others will not reduce the SSI check. SSA’s new rule nationalizes the state-specific rental subsidy exception, making it easier for SSI applicants and recipients nationwide to qualify for rental assistance. The best way to secure the exemption is to have a “business arrangement” (lease) with the disabled person in the amount of $350 per month for rent.

Impact on SSI Beneficiaries

SSI provides monthly payments to eligible individuals with disabilities, blindness, or those over 65 with limited income and resources. As of January 2023, more than 7 million individuals received federal SSI benefits, averaging $654 monthly. The recent changes aim to make SSI more accessible and equitable by addressing key factors that previously hindered eligibility and benefit amounts. With the new rules:

  • Increased Eligibility: More individuals will qualify for SSI, reducing the number of people who fall through the cracks due to previous restrictive ISM calculations.
  • Higher Benefits for Some: Current recipients may see an increase in their monthly payments, enhancing their financial stability.  The old rule reduced the SSI check from $943 per month to $628 per month if the SSI claimant was not paying the current market rent for rent.  With the new rule, and a written lease for $350, the SSI claimant will get the maximum SSI check of $943 per month, which is an additional $3,780 per year tax-free benefits.
  • Simplified Process: Eliminating food and simplifying rent from ISM reduces the reporting burden on beneficiaries, improves payment accuracy, and leads to administrative savings for the SSA.

Since its creation in 1972, the federal Supplemental Security Income (SSI) program has provided financial support to low-income individuals who are over age 65 or have a disability.

In March 2024, more than 7.4 million people across the United States received SSI benefits.

What SSI Includes

Through SSI, qualifying individuals receive monthly payments intended to help with food and shelter costs. The 2024 maximum federal payouts per month are $943 for an individual and $1,415 for an individual with an eligible spouse.

Many states also offer supplemental payments and medical assistance. Those receiving SSI, for instance, may be able to enroll in Medicaid, which helps cover hospital costs, doctor visits, and prescription drugs.

Qualifying for SSI

As SSI is a needs-based program for people with limited means, a person must meet strict income and asset limits to qualify. In addition to meeting these criteria, an individual must have a disability, be blind, or be 65 or older. If they are over age 18, their impairment also must render them unable to work. The majority of people who qualify — 84 percent — have a disability or blindness, according to the Center on Budget and Policy Priorities.

Children with disabilities can qualify for SSI as well. In 2024, 1 million children with disabilities from low-income families received SSI benefits. Unlike Social Security Disability Insurance (SSDI), individuals may receive SSI benefits regardless of their contribution to the workforce.

SSI Income Limits

The Social Security Administration (SSA) enforces income limits to ensure SSI benefits go to those experiencing poverty. While more than half of SSI recipients have no income, others qualify because their income is quite limited.

In 2024, an individual generally must earn a monthly income of less than $1,971. For a married couple, the monthly earned income limit is $2,915. Note that earned income may include wages as well as income from some other sources, such as self-employment.

An individual on SSI can also receive up to a certain amount of “unearned” income, in the form of Social Security benefits, annuities, or certain other funding sources. Note that the SSA has certain income exclusions.

Keep in mind that some states may have higher monthly income limits than others.

SSI Asset Limit

The SSA also limits how many assets an SSI recipient can have so that the program supports those with the most significant financial need. The asset limits for 2024 are $2,000 for a single person and $3,000 for a couple.

An asset is something of value that you can convert to cash, such as a bank account, car, or home. The SSA only counts certain assets, what it calls “countable” resources, toward its resource limit.

What Counts as a Resource for SSI?

When deciding whether an applicant can receive benefits, the SSA considers the value of the applicant’s countable resources. Countable resources include the following:

  • Money in bank accounts
  • Second vehicles
  • Cash
  • Stocks
  • Bonds
  • Personal property owned for value or investment
  • Vacation homes and land that is not the person’s primary residence

When a child under age 18 applies for SSI benefits, the SSA may take into account some of the income and assets of the parent or parents with whom they live.

What Does Not Count as a Resource for SSI?

Generally, things people rely on to live and that the applicant cannot sell easily do not count as resources. The following are not countable resources for SSI eligibility:

  • The applicant’s primary residence or family home and the land it is on
  • One household vehicle
  • Most personal belongings and household goods
  • Burial spaces and funds
  • Life insurance policies
  • Grants, scholarships, and fellowships
  • Money in a health care flexible spending account (FSA)
  • Savings in certain specialized accounts for disabled or low-income individuals
  • Other property that cannot be used or sold

Many people with disabilities have special needs trusts (SNTs), which help them qualify for SSI. A well-drafted SNT is not a counted asset for SSI. For the beneficiary to remain eligible for SSI benefits, the trust cannot provide cash distributions or pay for food or shelter. It can pay certain expenses directly, such as travel, recreation, and medical bills.

How to Apply for SSI Benefits

You can apply for SSI in several ways:

  • Contact your local Social Security office or call the SSA at 1-800-772-1213 (or TTY 1-800-325-0778 for those who are deaf or hard of hearing) and make an application appointment.
  • Submit an online request to start the SSI application process.

You can have someone call for you or assist you with your appointments.

The SSA recommends reviewing the SSI program requirements criteria before applying. As the SSA enforces stringent income and asset requirements, it rejects the majority of applications. Only four in 10 are accepted.

When an applicant does not meet the SSI program’s income and asset requirements, the SSA denies the application. If there is a question regarding whether an applicant has a qualifying disability, the SSA sends the application to state disability determination services for a medical evaluation.

Work With Your Special Needs Planning AttorneyYour special needs planning attorney can assist you with your application for Supplemental Security Income. They may also be able to help you qualify for these benefits by creating a special needs trust (SNT). The best path for you will depend on your unique circumstances. 

Oh dear, my client is getting a big lump sum retroactive award from SSA!

An attorney asks:  

I am seeking guidance for a client who is potentially subject to back pay from SSA. If a person is not able to spend down the funds is there a best way to move money out of their name to protect benefits? Would we consider a 1st party SNT or ABLE account in this scenario?  

Any guidance would be greatly appreciated.

Our response based on 50 years of experience:  Don’t do anything for about 6-8 months.  The retroactive award (also called an “underpayment” by SSA) is not counted for 9 months following the month the claimant receives the retroactive award.

SSA policy is found in POMS SI 01130.600 Retroactive Supplemental Security Income (SSI) and Retirement, Survivors and Disability (RSDI) Payments:

B. Policy

1. 9-Month exclusion

The unspent portion of retroactive SSI and RSDI benefits received on or after 3/2/04 is excluded from resources for the 9 calendar months following the month in which the individual receives the benefits.

I find that most of my clients have spent the money long before the 9 months are up.  Therefore, to avoid charging an attorney fee for an SNT or for helping to get the client into an ABLE account now, just wait until the 8th month before doing any special needs planning.

The new rule changes paragraph (b) of the existing regulation on Inkind Support and Maintenance, 20 CFR 416.1130 to read as in new paragraph (b). 

The old rule of paragraph (b) provided:

(b) How we define in-kind support and maintenance. In-kind support and maintenance means any food or shelter that is given to you or that you receive because someone else pays for it. Shelter includes room, rent, mortgage payments, real property taxes, heating fuel, gas, electricity, water, sewerage, and garbage collection services. You are not receiving in-kind support and maintenance in the form of room or rent if you are paying the amount charged under a business arrangement. A business arrangement exists when the amount of monthly rent required to be paid equals the current market rental value (see § 416.1101). Exception: In the States in the Seventh Circuit (Illinois, Indiana, and Wisconsin), a business arrangement exists when the amount of monthly rent required to be paid equals or exceeds the presumed maximum value described in § 416.1140(a)(1). In those States, if the required amount of rent is less than the presumed maximum value, we will impute as in-kind support and maintenance, the difference between the required amount of rent and either the presumed maximum value or the current market value, whichever is less. In addition, cash payments to uniformed service members as allowances for on-base housing or privatized military housing are in-kind support and maintenance.

That has been published to be changed to the new paragraph (b) (1) below on September 30, 2024.

PART 416—SUPPLEMENTAL SECURITY INCOME FOR THE AGED, BLIND, AND DISABLED 

Subpart K—Income ■

1. The authority citation for subpart K of part 416 is revised to read as follows: Authority: 42 U.S.C. 902(a)(5), 1381a, 1382, 1382a, 1382b, 1382c(f), 1382j, 1383, and 1383b; sec. 211, Pub. L. 93–66, 87 Stat. 154 (42 U.S.C. 1382 note). ■

2. In §416.1130, revise paragraph (b)(1) to read as follows: 

20 CFR §416.1130 Introduction. * * * * *

 (b) * * * 

(1) We calculate in-kind support and maintenance considering any shelter that is given to you or that you receive because someone else pays for it. Shelter includes room, rent, mortgage payments, real property taxes, heating fuel, gas, electricity, water, sewerage, and garbage collection services. You are not receiving in-kind support and maintenance in the form of room or rent if you are paying the amount charged under a business arrangement. A business arrangement exists when the amount of monthly required rent to be paid equals or exceeds the presumed maximum value described in §416.1140(a)(1). If the required amount of rent is less than the presumed maximum value, we will impute as in-kind support and maintenance the difference between the required amount of rent and either the presumed maximum value or the current market rental value (see §416.1101), whichever is less. In addition, cash payments to uniformed service members as allowances for on-base housing or privatized military housing are in-kind support and maintenance. 

* * * * * [FR Doc. 2024–07675 Filed 4–10–24; 8:45 am] 

Example:

Mom has rental home that she normally leases to strangers for $1,500 per month.  She leases instead to her disabled son and his wife and kids for $350 (a few dollars more than this year’s PMV amount).

Before the rule change, SSA would calculate the difference between the Fair Market Value of $1,500 and the rental agreement of $350 as a “rental subsidy” and say that the disabled person is receiving $1,150 as “countable income” making the disabled person not eligible for SSI benefits.  SSA lost case-after-case when they were challenged in court.

The Seventh and Second Circuit Court of Appeals decisions are now accepted by the new published regulation, as official SSA policy nationwide beginning 9/30/24.  

As of that date if the disabled person in the example has a lease for the amount of the “presumed maximum value” rule [calculated as 1/3 of the Federal Benefit Rate +$20], or greater, there can be no reduction in the maximum SSI check and SSA has to pay the full $943 per month SSI check unreduced by the PMV because the disabled claimant has enough from his SSI check to fully pay his own shelter expenses.

The Social Security Administration (SSA) has published a final rule simplifying and expanding its rental subsidy program for Supplemental Security Income (SSI).

Effective September 30, 2024, the new rule is likely to allow more people to qualify for SSI. In addition, some current SSI recipients may see an increase in their monthly benefit amount as a result. The rule change is part of a broader agency effort to streamline certain aspects of the SSI program.

SSI applicants and recipients may want to talk to a special needs planning lawyer about the new rule if they have questions about how it affects them.

Remind Me, What Is SSI?

SSI is a federal public benefits program that provides a modest monthly benefit to qualifying recipients. It serves people with disabilities and older adults across the United States who meet strict income and resource limits. In most states, to be eligible for SSI, an individual must have less than $2,000 to their name.

SSI Rental Assistance Explained

Income does not only affect whether an individual is eligible for SSI benefits. It also has an impact on the SSI recipient’s benefit amount.

The SSA defines income as anything a person can use to meet their food and shelter needs. This includes not only “earned” income from a job and “unearned” income such as gifted cash, but also what SSA calls “items received in-kind,” including shelter given to an individual or that someone else pays for.

A rental subsidy can result in a lower SSI payment for current recipients. It may also disqualify someone from receiving SSI because their income is too high.

However, SSI is now changing how it calculates the rental subsidy amount. The new rule will expand an exception that previously only applied in seven states but starting in September will apply nationwide.

How Rental Subsidy Is Calculated – The Current Rule

If an individual pays a monthly required rent charge that equals or exceeds the current market rental value (CMRV) in their area, a “business arrangement” exists under SSA rules. This means that the SSA does not see the SSI applicant or recipient as receiving rental assistance.

SSA regulations consider a person to be receiving a rental subsidy — a type of unearned income — if they are paying a monthly rent amount for a property that is less than the CMRV where they live. This commonly occurs when somebody is living with a family member who charges them less for rent than what they would pay on the open market.

For example, consider an SSI recipient who lives with their sibling, paying a monthly rental rate of $400. If the CMRV in their area is $800, the amount of rental assistance would be $400.

However, SSA imposes a regulatory cap, called a Presumed Maximum Value (PMV), on the rental subsidy amount that can be assessed; that amount is $334.33 for 2024. The SSA also has an unearned income exclusion of $20 per month.

Using the example above, imagine a landlord accepting $400 per month instead of the CMRV of $800. The amount that the SSA would count as rental assistance would be $314.33 ($334.33 PMV minus the $20 general income exclusion amount.

Assuming a maximum monthly SSI payment of $943 in 2024, and assuming there is no other countable income, the recipient’s benefit amount would be reduced to $628.67 ($943 minus $314.44).

Exception

Following court cases that challenged SSA’s rental subsidy rule, exceptions were provided in seven states — Texas, Connecticut, New York, Vermont, Illinois, Indiana, and Wisconsin.

In these states, a “business arrangement” still exists. However, the rental subsidy does not count as income if the monthly rental rate equals or exceeds the PMV, instead of the CMRV.

Apply this exception to the example above: An SSI recipient in Connecticut pays $400 per month instead of the CMRV of $800 per month. They would not have their rental subsidy count as income because the $400 payment is more than the $334.44 PMV for 2024.

The SSA notes that in the seven excepted states, application of the rental subsidy exception generally results in a higher SSI payment amount.

New Rule Applies SSI Rental Subsidy Exception Nationwide

SSA announced in April 2024 that the new rule would make the state-specific rental subsidy exception national policy for SSI applicants and recipients.

According to the SSA, the policy change will increase the benefit amount for some recipients and allow more people to qualify for SSI payments. However, it will not affect how much SSA pays per month (a maximum of $943 in 2024).

Disability Scoop reports that the updated policy is expected to raise payments by an average of $132/month for 41,000 people and allow 14,000 additional people to qualify for SSI annually.

Even with this exception, though, some applicants could see their monthly benefit amount reduced; others may not qualify. The actual formula that the SSA uses is complicated and includes the number of household members, as well as other sources of income.

The rental subsidy rule change is the latest SSA effort to remove barriers to accessing SSI payments. Also in the fall of 2024, the agency will no longer use food an applicant or recipient receives from friends, family, and community support networks as part of its “in-kind support and maintenance” calculations. And in April, SSA published a rule changing how it factors support from other public assistance programs, such as SNAP, when determining beneficiary payments.

More than 7 million individuals received federal SSI benefits in January 2023, with payments averaging $654 per month. During calendar year 2022, 1.23 million individuals applied for SSI benefits based on blindness or disability, while 172,000 applied based on age. Approximately 522,000 applicants received SSI benefits in 2022, a decrease of 1 percent compared to 2021.

Understanding Social Security Benefits Can Be Difficult. Your Attorney Can Help.

While the new SSI rule may be advantageous for many low-income, disabled Americans, terms like “PMV,” “CMRV,” and “in-kind” support are not necessarily intuitive. They may add to the confusion around an already long and challenging SSI benefits process.

To make sure the value of your rental subsidy is accurately determined, and that you receive the SSI benefits you’re entitled to, get in touch with your special needs planning attorney.

When we do an SNT for a claimant on SSI and SSI-related Medicaid, the receipt of the personal injury award funds is countable unearned income in the month received.  If we transfer out the funds to an SNT, the funds do not become a disqualifying resource if completed before the first of the following month.

But what do we do about the income in the month of receipt?  It is counted as disqualifying income and causes a potential overpayment.  To be eligible in any particular month, the SSI claimant must have resources of less than $2,000 on the first of the month, and income of less than $963 for any one of the days in the month. ($943 + $20 “general  income disregard”).

EXAMPLE:  William receives a personal injury settlement check of $300,000 on March 11th.  It is counted as “unearned income” for the March SSI check already received that month, that was based on his not having this unanticipated income.  We move the $300,000 into a Special Needs Trust before April 1st, so there is no problem with ongoing ineligibility for having too many resources in months May, June, July, etc..  But what about the excess income received in March, counted as income received March 11th?   It is  legally an overpayment, and SSA will generate a notice to William that he had excess income in March, and he owes the entire SSI check back, as an income overpayment, in the sum of $943.  What’s the legal answer?

The answer is requesting an SSA “administrative waiver” of the overpayment amount.  The rule effective for many years past was that if the amount of the overpayment was less than $1,000 that SSA could waive it, IF REQUESTED TO DO SO, because it was administratively not worth pursuing.  Now that number jumps to $2,000 that can be “administratively waived.”

If the person requests a reconsideration on the amount of the overpayment and the person is liable for an overpayment of $2,000 or less, the reconsideration is treated as a request for waiver after the processing center (PC) makes a formal reconsideration determination or dismissal, if there will be no effect on current or future benefits per GN 02201.013E.1.

In a few years, the current SSI payment amount would exceed the $1,000 authority to waive it.  So SSA has just announced that they are waiving the administrative waiver from $1,000 to $2,000.

GN 02250 TN 56 and SI 02260 TN 47 – Waiver Provisions for Overpayments

  • The administrative waiver tolerance has been increased from $1,000 to $2,000 in both Title II and SSI cases;
  • When a liable person requests waiver and the total amount of that person’s liability is $2,000 or less, recovery will be waived (unless there is some indication that the person may be at fault);
  • Application of the $2,000 administrative waiver tolerance depends on the total amount of a person’s liability;
  •  Example: a person who is liable for several overpayments, which total more than $2,000, even though each is $2,000 or less, cannot be considered for waiver under this tolerance;
  • If an overpayment of more than $2,000 has been reduced to $2,000 or less by repayment or collection, the waiver tolerance does not apply;
  • If the person requests a reconsideration on the amount of the overpayment and the person is liable for an overpayment of $2,000 or less, the reconsideration is treated as a request for waiver after the processing center (PC) makes a formal reconsideration determination or dismissal, if there will be no effect on current or future benefits per GN 02201.013E.1;
  • Neither full development nor an SSA-632-BK (Request for Waiver of Overpayment Recovery or Change in Repayment Rate) is required for waivers which will be processed under this provision.

Also, SSA has made another claimant-friendly update.  Because SSA is so bogged down in workload with the reduction in staff of almost 10,000 workers, but an increase in numbers of baby-boomer retirees and others seeking benefits, they are suspending Continuing Disability Reviews (CDRs) for the remainder of the year to give Disability Determination Servicesin the 50 states and SSA personnel a breather.

EM-24021 – 2024 Full Medical CDR Workload – One-Time-Only Instructions

  • For the remainder of FY 2024, the field offices will not send additional full medical CDRs to DDS;
  • If unassigned full medical CDRs are currently pending, DDS will take no action for the remainder of FY 2024;
  • For pending full medical CDRs that require a consultative evaluation, all CEs scheduled on or after June 21, 2024 will be canceled (unless the case is for a low birth weight baby, expedited reinstatement, pre-hearing, disability hearing, or fraud or similar fault);
  • If there is currently insufficient evidence in the file to make an age-18 redetermination, DDS will not initiate additional development, schedule a CE, or assign a medical or psychological consultant for review.

Note: See update to this post from September 11, 2024

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 David@LillesandLaw.com

Have you heard the terms “special” needs trust and “supplemental” needs trust and wondered what the difference is? The simple answer is that there’s no difference. 

Whether supplemental or special, these trusts serve the same purpose of helping meet the needs of individuals with disabilities while still permitting them to qualify for vital public benefits programs. But there are different categories of special needs trusts and important differences between them that warrant a longer explanation. 

What’s in a Name? Background on Special Needs and Supplemental Needs Trusts

The field of special needs planning began more than three decades ago with the passage of the Omnibus Budget Reconciliation Act (“OBRA”) of 1993, a law that overhauled Medicaid and authorized the creation of a new special needs trust. 

Prior to OBRA, a disabled person under the age of 65 who had assets greater than $2,000 was not eligible for means-tested government assistance programs like Medicaid and Supplemental Security Income (SSI). In the government’s eyes, it didn’t matter if the assets came from an injury or medical malpractice award, pre-disability personal savings, or an inheritance. A disabled person had to remain at or below $2,000 in assets to retain public assistance. 

As a result of this policy, the families of disabled individuals faced a stark choice. They could provide financial support for a disabled loved one, but doing so often resulted in the loss of their means-tested benefits. Another option was to disinherit the person with special needs and leave the money to another family member, such a sibling, for the disabled person’s benefit — a risky option at best. 

However, a third option emerged: the use of a third-party trust that benefited a disabled person but was funded by family members, often a parent. This arrangement kept the trust funds out of the beneficiary’s Medicaid and SSI means testing consideration. 

Congress took a negative view of these third-party trusts and attempted to limit their use. But a compromise emerged when OBRA authorized first-party special needs trusts. 

Some practitioners called for distinguishing between these new trusts and third-party special needs trusts by calling the former “special needs trusts” and continuing to call the latter trusts “supplemental needs trusts.” This approach never really caught on, though. 

Instead, over time, both types of trusts have come under the rubric of special needs trusts and the term “supplemental needs trust” has fallen away. The term “special needs trust” refers to the purpose of the trust — to pay for the beneficiary’s unique or special needs. In short, the name is focused more on the beneficiary, while the name “supplemental needs trust” addresses the shortfalls of public benefits programs.

More than 20 years after OBRA was passed, in December 2016, President Obama signed the 21st Century Cures Act into law. Section 5007 of the Act (“Fairness in Medicaid Supplemental Needs Trusts”) further modernized special needs trusts, allowing a person who meets the government’s definition of “disabled,” yet who is also mentally capable, to establish their own first-party special needs trust, rather than relying on a third party to set it up for them. 

First-Party vs. Third-Party Special Needs Trusts

Special needs trusts (SNTs) now encompass both traditional third-party trusts and first-party trusts created under OBRA. They can hold many types of assets, including cash, real estate, investments, and life insurance policies. 

  • Special needs trusts funded with assets belonging to a person other than the disabled beneficiary (such as a parent, grandparent, sibling, or some combination of family and other individuals) are referred to as third-party special needs trusts.
  • Special needs trusts funded with assets/income belonging to a disabled individual who is also the trust’s beneficiary are called first-party special needs trusts

First-Party Special Needs Trust 

First-party special needs trusts derive their name from the fact that they hold assets belonging to the beneficiary of the trust (i.e., first-party assets). They’re also known as: 

  • (d)(4)(A) trusts (referring to the statute)
  • Pay-back trusts (referring to the feature that any funds remaining in the trust at the beneficiary’s death must be used to reimburse the state Medicaid agency)
  • Self-settled trusts (referring to the fact that these trusts are created with the Medicaid beneficiary’s own funds)

First-party SNTs are typically set up by a person with special needs, or on their behalf, who has assets but still wants to qualify for means-tested public assistance (e.g., Medicaid and SSI). 

Often, these assets come from a lawsuit settlement or an inheritance. But in order for the trust’s assets to not be counted for Medicaid/SSI purposes, the beneficiary must, by law, be under the age of 65 when the trust is established and funded.

Third-Party Special Needs Trust

Third-party SNTs are set up by the family members of a special needs individual. Like a first-party SNT, the primary intent of a third-party SNT is to provide financial support to somebody with a disability or functional needs while not jeopardizing their means-tested government benefits. 

There are two main types of third-party special needs trusts: standalone and testamentary. 

  • Standalone third-party SNTs are effective as soon as they’re created and eligible to hold assets from more than one third-party source, usually multiple family members and/or family friends, both during the creator’s lifetime and after. Standalone SNTs can provide cost savings because only one trust is created, but it can pool assets from different individual benefactors. 
  • Testamentary third-party SNTs are created through the estate plan of a third party, taking effect at the time of their death. When the creator passes away, assets specified in their estate plan transfer into the special needs trust. A testamentary SNT can be set up as a dual-purpose trust that allows the creator to keep assets in the trust they need during their lifetime, and then have those assets later transfer to a disabled beneficiary. 

Similarities and Differences Between First-Party SNTs and Third-Party SNTs

First-party and third-party special needs trusts serve the same end: to offer supplemental assets to a disabled beneficiary without disqualifying them from Medicaid, Social Security, and other public benefit programs. 

These programs usually provide a level of support that only meets a person’s most basic needs. Special needs trusts can therefore help to ensure that beneficiaries have access to more resources and enjoy a higher quality of life. 

But while both types of SNTs serve the same goal, there is a major difference between them when it comes to government benefit reimbursement. 

  • With a first-party SNT, after the beneficiary dies, the state Medicaid agency can collect reimbursement for payments made to them during their lifetime. Sometimes, whatever funds remain in the trust are fully exhausted to meet this demand. Once Medicaid gets their cut, the trust balance can pass to other beneficiaries named in trust documents (so-called “remainder beneficiaries”). 
  • Third-party SNTs are not subject to Medicaid reimbursement. When the beneficiary dies, all remaining trust assets are eligible to pass to remainder beneficiaries. The government is not entitled to a Medicaid “clawback.” 

The reason for this difference is that first-party SNTs are funded with first-party money belonging to the beneficiary, while the assets held in a third-party SNT never belonged to the beneficiary. It’s a legal technicality, but an important one. 

Choosing a Trustee for a Special Needs Trust

When setting up a first-party or third-party SNT for a disabled loved one, among the most important decisions is who will serve as trustee, or the party that manages the trust on behalf of the beneficiary. 

A trustee can be a person, like a family member or friend, or a professional trust administrator, such as an attorney or a financial institution. More than one party can simultaneously serve as trustee. It’s also a good idea to name a successor trustee to take over for the original trustee(s) when they are no longer able to serve. 

Whoever you choose to serve in this rule, choose wisely. The responsibilities of a special needs trust trustee are crucial to maintaining a beneficiary’s public assistance eligibility. 

The trustee must understand the trust’s terms and benefit regulations and only pay for expenses that an SNT can cover. The trustee is also responsible for managing trust investments and acting in the best interest of the beneficiary. 

For these reasons, a professional trustee might be a prudent choice for administering a special needs trust, or at the very least co-administering it with a family member to ensure full legal compliance. 

To discuss these and other legal issues surrounding SNTs, including which type of trust should be used in your situation, consult with your special needs planner.

Duel Eligible – Special Needs Plans (D-SNP) are not available only for special needs planning for disabled people.  It is the fastest growing component of health insurance for concurrently eligible insureds having both Title 2 and Title 16 eligibility which triggers Medicare and Medicaid health insurance.  The term “Special Needs Plans” refers not to the disability or “special needs” of the insured, but to the requirement in the 2010 Affordable Care Act for CMS to seek maximum coordination between Medicare and Medicaid for individuals insured by both programs simultaneously.  

Private insurance companies spend huge television budgets to attract individuals to their Medicare Advantage plans.  Approximately 49% of Medicare beneficiaries elect Medicare Advantage plans.  

Recent history.  In Florida there are over 180,000 people whose Title 2 retirement or SSDI check was less than the SSI Federal Benefit Rate, thus entitling the person to receive two checks each month, the Title 2 check plus the Title 16 Supplemental Security Income check.  Receipt of each check triggers two separate health insurance programs.  Experience had shown that having two separate insurance plans – one for Medicare and one for Medicaid – often led to missed opportunities to provide the best care due to lack of coordination between them. 

Florida ’s Agency for Health Care Administration (AHCA)response was to accept the CMS invitation to require Medicare Advantage plans seeking additional insureds was to require that they cannot solicit individuals who also had Medicaid into their D-SNP plans unless the private insurance company also became a Florida Medicaid Managed Care insurer. This resulted in Florida becoming one of the earliest adopters of CMS’s Fully Integrated Duel Eligibility (FIDE SNP) plan in 2022.  For example, Aetna insurance, a major player in the Medicare Advantage world, was advised by Florida AHCA that they could not recruit duel eligible insureds unless Aetna also became a Florida Medicaid Managed Care organization. 

Low-income individuals eligible for Medicare Savings Programs for example QMB, are designated as potential duel eligible individuals who can join a FIDE Duel Eligible Special Needs Plan.  In addition, the state can opt to buy-in certain high use Medicaid insureds into Medicare for the cost of the Medicare premium.

What benefit does the State of Florida receive from promoting D-SNP?  The answer lies in its funding responsibilities.

Medicare Advantage plans are funded 100% by payment by the federal government at approximately $950 per month to the private Medicare Advantage insurance companies who agree to provide in Medicare Part C all the services to the insureds that the insureds would receive if they maintained their Medicare Parts A and B. 

Medicare is primary insurance while Medicaid is the payor of last resort.  

Medicaid potentially requires the State of Florida to pay up to a maximum of 50% of the insureds’ claims under the federal/state joint Federal Medical Assistance Percentage (FMAP) for Medicaid.  Florida, being relatively poorer than the majority of states, is currently under a 57% federal, 43% state split. Before Medicaid Managed Care, the fee-for-services costs could be astronomical to the state, as was the Medicaid lien at death of the SNT beneficiary.

By encouraging maximum participation in Medicare Advantage, and with Medicare being primary, the state’s financial responsibility shifts dramatically in its favor.  

Under the D-SNP program, the federal government pays the Medicare Part C insurance company, and the state pays a much smaller additional premium of approximately $200 per month to the same insurance company to provide Medicaid services.  The state’s contribution each month then does NOT depend on the patient’s actual medical expenses at all.  The private insurance company provides all the mandatory Medicare and Medicaid services needed by the individual. The state’s total outlay is $200 per month per patient.

The result is shifting the responsibility for some insureds from 43% Medicaid where the state pays a portion of primary care, to Medicare where the state pays nothing.  The state’s obligation is a maximum of $200 per month to assure 100% coverage for hospitalization, physicians, labs, prescription costs (with no hole in the donut issues), and related services.

What is the advantage of D-SNP for SNT beneficiaries? The answer lies in the expected Medicaid lien at death, an important consideration by some clients before they agree to put excess resources/assets into an individual Special Needs Trust.

Before Medicaid Managed Care, neither beneficiaries nor their attorneys had no idea what the client’s Medicaid lien would be at death. If the insured now becomes a member of a D-SNP plan, the attorney can advise the client that the lien at death is repayment to Florida of the $200 monthly premium from the date of funding the d4A SNT until their death.  It is not the repayment of the medical services used at all.

How does the attorney apply for D-SNP?  The attorney doesn’t! Google D-SNP in your county. Competent clients can contact the various private insurers offering D-SNP plans.  The insurance company staff do the applications and assure coverage for those eligible.  If the client wants to compare various insurance company plans in any county, but doesn’t want to contact them individually, contact an independent insurance broker.

D-SNP insurers offer everything that Medicaid does, plus often extra dental, vision and hearing benefits, other features such as transportation, over the counter medications, and a personal care team. The personal care team for Aetna, for example, consists of a care coordinator, a nurse care manager, a member advocate and a social worker. Clients report that the social workers are quite aggressive about making the client get up to date vaccinations, lab tests for diabetes, and annual checkups.  That’s the secret to keeping insurance costs down – early identification and treatment while problems are small.

“Social Security among survey’s worst federal workplaces”

Repost from Washington Post, May 20, 2024

A survey of more than 1 million federal employees reflects
the low morale of many workers.

Overall, the federal government scored 65.7 out of 100, a 2.3-point
increase over 2022. Unfortunately, for their employees and customers, some
workplaces were well below that. The Social Security Administration (SSA)
was at 52.1.

Building on lessons he learned as Baltimore’s mayor and Maryland’s
governor, SSA Commissioner Martin O’Malley is frank about the problems he
faced when he joined the agency in December.

“You know, the president didn’t ask me to come here … because the
agency was doing well,” O’Malley said by phone. “I’m here because he saw
what had happened when Congress reduced our staffing to a 25-year low,
even as the number of customers we serve has climbed and will continue to
climb to an all-time high.”

One of the first things he did after taking office was to meet with SSA
staffers around the country in “mayoral-style town halls,” O’Malley said. “I

The annual Best Places report is produced by the Partnership for Public Service and Boston Consulting Group, using data from the Office of Personnel Management’s Federal Employee Viewpoint Survey. Agencies are ranked by engagement scores that approximate employee morale. The Partnership says
the scores reflect “the commitment of the workforce, its job and organizational satisfaction, and the willingness of employees to put forth discretionary effort to achieve results.”


Among the 1,600 employee responses was a complaint about an
agency form that had clients separately click responses to 41 questions about
their money. O’Malley remembered one Boston staffer saying, “’My firstborn
for a ‘no to all’ button.’ And so, within two weeks, we got that done.” This is an example of a small change making life easier for employees and customers. Staffers are “thrilled with actually being able to serve the public,” O’Malley said. “They are win-wins. You improve the employee experience, you’re improving customer service.”

American Federation of Government Employees (AFGE) officials agree
with that. Union leaders, strongly critical of agency leadership in the past,
acknowledge positive changes under O’Malley, while calling for continued
improvements.

“SSA employees have been and remain chronically overworked and
overwhelmed due to years of underfunding and understaffing, while their pay
and benefits are uncompetitive compared to other agencies and employers,”
said a statement from the AFGE SSA General Committee. But it praised O’Malley for listening to workers, streamlining work processes, improving training “and making a real effort to improve their working conditions.”


When an unexpected inheritance or lawsuit proceeds are received by a person with disabilities who is on SSI-disability or SSI-elder benefits, the event calls for some special needs planning to continue the SSI monthly checks and Florida Medicaid without going over the $2,000 resource limit. Many think the best or only answer may be an individual or pooled Special Needs Trust. That is not the case. This practice note discusses the advantages of a room and board contract for a term of months or for lifetime, can in some circumstance have significant cash and other benefits over a personal services contract or a special needs trust.

In 1999 the Social Security Act was changed to impose an Supplemental Security Income (SSI) transfer of resources penalty for transferring assets for less than fair market value (FMV) for a period of months capped at 36 months. Prior to that persons with disabilities could simply give away excess resources, continue to receive SSI which would trigger continuation of Medicaid. The Social Security Administration (SSA) immediately added Section SI 01150.005 to the Program Operations Manual System (POMS) to explain how the agency is to assess fair market value and delineate the exceptions to the transfer penalty, giving the special needs attorney some additional and often better tools to maintain public benefits. SSA defines fair market value as “the current market value (CMV) at the time the resource transfers,” noting that CMV is the going price that the resource could be reasonably be expected to sell on the open market in the local area involved. 3 SSA also defines “compensation” as the cash or other valuable consideration provided in exchange for the resource, paid by cash or real or personal property received in exchange.

The value of the compensation received by the SSI claimant is determined by looking at the legally binding agreement between the SSI claimant-transferor and the person or entity receiving the resource. Particularly important is the POMS statement that “The transferor may actually receive the compensation before, at, or after the actual time of transfer.”

Inkind support and maintenance (ISM) may provide the compensation for the transfer valued at its full current market value multiplied by the length of time for which the ISM is to be provided under the agreement. SSA provides a helpful example of a contract for a period of years:

Example: Determining whether ISM applies:

Mr. Thomas transfers $30,000 cash to his sister based on a written contract that she would provide him with food and shelter for 5 years. The sister values the food and shelter at $500 per month. The CR develops Mr. Thomas’ living arrangements and determines that he has a flat fee arrangement with his sister and required to pay $500 per month. The food and shelter for 5 years is worth $30,000 (5 years x $6,000 per year). Therefore, Mr. Thomas received FMV for the $30,000 he transferred. ISM is not counted because the Mr. Thomas has prepaid for his food and shelter with the $30,000 he transferred. SSA Staff are instructed to use the actual value of the ISM as defined in the standard food and shelter instructions and not the one-third reduction or presumed maximum value (PMV) to set the value of the compensation in the agreement. Staff are further instructed to obtain a statement from the ISM provider to confirm that the ISM is being provided using SSA’s form 8011-F3 (Statement of Household Expenses and Contributions).

What about a legally binding agreement that in exchange of some real property, personal property or cash, the SSI claimant will receive ISM for his or her life? Staff are instructed to multiply the yearly CMV of the ISM provided by the “Years of Life Remaining” corresponding to the SSI claimant’s age (or next lower age) found in POMS SI 01150.005F. Note that this chart may be different that the life expectancy charts in the Florida Medicaid Manual. SSA provides two useful examples showing the effect of an agreement to provide ISM for life: Example 1: Total value of ISM results in FMV compensation Valerie Payne transferred nonhome real property valued at $185,000 to her sister. As compensation, her sister agreed to provide Ms. Payne with room and board in the sister’s home for the rest of Ms. Payne’s life. ISM development showed that her sister’s total household expenses were $1,500 per month. The household consisted of 3 persons, including Ms. Payne who was age 53 at the time of the transfer. The CMV of the ISM was $6,000 per year ($1,500/3 = $500 per month X 12 months = $6,000). Then, $6,000 X 31.61 (average years of life remaining at age 50) = $189,660 compensation. In this case, Ms. Payne received FMV for the transferred resource. We do not count ISM because the individual prepaid for her own food and shelter with the value of the home she transferred. For procedure on determining an individual’s contribution
toward household operating expenses, see SI 00835.480D.

Example 2: Total value of ISM results in uncompensated value

Assume the same case facts as Example 1 except that Ms. Payne is 80 years old at the time of the transfer. As in Example 1 the ISM is worth $6,000 per year. At 80 years of age the life expectancy table indicates 7.16 years. Multiplying 7.16 years times $6,000 results in compensation of $42,960. In this case there is uncompensated value of $142,040 ($185,000 minus $42,960). Therefore, Ms. Payne is subject to a period of ineligibility for SSI because she transferred the house for less than FMV. The agreement between Valerie Payne, the SSI claimant, and her sister could arise in a couple of ways. Perhaps Valerie and her sister were living together for years, and Valerie then inherited a home (described in the example as “nonhome real property”) as an inheritance from another person. Or perhaps Valerie was living in her own home, and as she became more physically wanted to move in with her sister who could help care for her. Her former home then became a countable resource since it was no longer her primary residence.
In all likelihood, before the ISM agreement and property transfer, either scenario would see Valerie’s SSI check go down due to her inability to pay her fair share of her sister’s household expenses.

SSA is required to deducted for the ISM received by her sister shouldering disproportionately more of the household expenses. This one-third loss of Valerie’s SSI check amounts to approximately $3,000 per year. At this point Valerie decides to sell for cash or transfer the real property and move with her sister. What are the options?


Option 1.

Just give the money to her sister. If Valerie sells the house and receives the $185,000 sales proceeds and just gives the money to her sister, with no agreement for anything in return, the transfer penalty applies in full. The amount transferred ($185k) divided by the Federal Benefit Rate (currently $794 per month), produces the number of months that Valerie would receive no SSI checks at all, but capped at a 36 month penalty. The amount transferred in this case results in a penalty
calculation of 232 months but capped at 36 months causes the loss of benefits from the date of transfer for three years. While that choice is only a loss of approximately $10,000 per year tax free for three years, or $30,000 total, the more significant potential loss is the SSI-related Medicaid health insurance coverage. There are no income tax consequences to the sister since it is a gift.

Option 2.

Use a Special Needs Trust. If she sells the home, receives $185,000 cash and puts
the funds in a special needs trust with the trust paying Valerie’s share of the household expenses, the trust’s contribution triggers the ISM reduction anyway for payments for food and shelter. She still loses over $3,000 per year in tax free SSI benefits by having a trust because her SSI check is reduced from $794 to $530 per month. And she incurs attorney fees, trustee fees, and CPA fees, and if she uses a
pooled or individual SNT, and a potential startup fee as well. The result is that Valerie has more expense and less tax-free income. At 31 years of life expectancy the one-third loss of tax free SSI income amounts to $93,00 alone, and the trustee fee could amount to $172,000 (at 3% over 31 years).

Option 3.

Use a personal services contract. Instead, Valerie decides to engage in some other
special needs planning and transfers the sales proceeds to her sister in an agreement for personal services to be received in the future. Such Personal Service Contracts (PSC) are specifically allowed under the same POMS. 8 How to draft a proper PSC is laid out in a SSA Atlanta Regional Chief Counsel Precedent (opinion letter). The amount the sister receives is IRS-taxable income of $185,000 which results in a potential substantial loss of $36,011 if using the standard deduction.


Option 4.

Use the ISM contract for room and board detailed in the POMS above. The benefit
of using the SSA-suggested option of transferring the sales proceeds, or transferring title to the non-home property, to the sister would include avoiding:
the ISM deduction from her SSI checks; attorney fees for trust preparation; and
lifetime trustee fees and expenses. Once received, the sister does not have to account further for the funds. She is required under the contract to provide food and shelter, but not maintain an account to do so. Ongoing accounting
fees are also eliminated. In addition, three separate tax experts have advised our office in three separate cases that the room and board contract to share food and shelter expenses results in no federal income tax consequences for the person who receives the funds and agrees to provide the food and shelter. Thus, the $36,011 income tax loss by using the Personal Services Contract is eliminated by the ISM agreement.

Special needs planning should not be one shoe fits all, nor should special needs planners apply only one single technique to a particular SSI claimant’s situation. Combinations of some appropriate spend down (paying off credit card bills, paying down mortgages, purchasing new appliances, vehicles, clothes, computers, dental care, and infinitely more), ABLE accounts for those eligible, some funds in ISM contracts, etc., can make clients extremely happy to have a special needs plan tailored to meet their individual needs.

Room and board or ISM contracts can effectively handle small or larger amounts of funds since such contracts can be for a term of several months, several years or as described SSA in the POMS’ example, for a lifetime. Additionally, room and board contracts increase the SSI check over the use of Special Needs Trusts by legally avoiding the monthly loss of full SSI benefits due to Inkind Support and
Maintenance deductions. Such contracts are not appropriate in every case, but where they are, the advantages over SNTs and PSCs are substantial.


1 Foster Care Independence Act of 1999 (P.L. 106-169).
2 Florida Statutes §409.903(2) enacted pursuant to the Social Security Act, Section 1634.
3 SI 01150.005.B.1.
4 SI 01150.005.B.2.
5 SI 01150.005.C.2.
6 POMS SI 00835.001
7 POMS SI 01150.005.D.3.
8 POMS SI 01150.005.D.4
9 PS 01820.011 Florida, A. PS 14-102 Supplemental Security Income Resource Determination—Validity Of Personal
Services Contract.

Man who uses wheelchair does taxes on computer at desk in home office.Approximately 6 percent of adult Americans experience an activity-limiting injury every three months, according to the Centers for Disease Control and Prevention (CDC). Injuries can happen because of carelessness, such as distracted driving or a slippery floor at a restaurant or store. In fact, accidental injuries are also the fourth-leading cause of death.

Many people become injured in their workplace, resulting in a disability. According to the National Safety Council, workplace injuries occur as often as every seven seconds. The Social Security Administration (SSA) reports that 45 percent of men and 26 percent of women receiving disability benefits became impaired because of workplace accidents, injuries, or illnesses. 

In addition to causing death and disability, injuries claim a significant economic toll. The CDC estimates that in 2019, the economic cost of injuries was $4.21 trillion. This comprised $327 billion in medical care and $69 billion in loss of work.

Personal Injury Lawsuits 

If someone’s negligent actions cause an injury, the injured person can make a personal injury claim. This is where the help of personal injury lawyers comes in. The purpose of these types of claims is to recover compensation for the injury. 

Most claims primarily involve compensation for the financial and emotional cost of the injury. However, in cases of severe negligence, injured people can also receive additional money intended to punish the party responsible. 

Personal Injury Settlements 

When injured people bring claims against those at fault, they often reach a settlement agreement and receive compensation. For example, in the case of car accidents caused by negligence, automobile insurance companies would typically pay the settlement payments. (These payments might go to the injured individual as a lump sum or in installments.) 

The Law Dictionary reports that approximately 95 percent of personal injury cases settle before trial. For those cases that result in a trial, more than 90 percent end with an injured person or surviving family winning the case and receiving a money judgment. 

Are Lawsuit Settlements Taxable?

Whether a personal injury settlement is entirely or partially subject to federal income tax depends on the type of compensation the injured party receives. Personal injury damages fall into different categories, such as compensatory damages. These types of damages may compensate for things like lost wages or the cost of litigation. Other categories include punitive damages and damages for emotional distress. Some damages are not subject to federal income tax. 

The purpose of compensatory damages is to make the injured person “whole.” This type of compensation provides for money lost. 

For example, someone injured by a distracted driver could receive compensatory damages that make up for the financial losses from the accident. Compensatory damages could cover the cost of medical bills, follow-up appointments, and physical therapy. It also can address income diminished by loss of wages as well as the impact of pain and suffering. 

Because compensatory damages make up for financial losses directly resulting from the incident, they are generally not subject to income tax. To be tax-exempt, however, the compensation must address a physical injury. 

The Internal Revenue Service (IRS) typically considers compensation for emotional distress, mental harm, and mental illness as taxable income received. This is because the financial toll of mental anguish can be more challenging to measure. For example, someone who developed post-traumatic stress disorder (PTSD) following an accident might have to pay taxes on compensation for their PTSD. 

Although not common, victims of gross negligence may receive punitive damages in addition to compensatory damages. 

Punitive damages do not seek to make the person whole; instead, they punish the wrongdoer. Punitive damages do not provide compensation for direct, measurable loss. Therefore, they do count as income and are subject to federal income tax. 

State income tax rules vary. Some states, such as Florida, do not have an income tax. When states impose an income tax, taxation of settlements often reflects the federal rules. 

How to Avoid Paying Taxes on Settlement Money 

Advocating for their client, an attorney may negotiate a settlement that avoids federal income tax. Compensatory damages for physical injuries are generally not taxable. So, the attorney may emphasize the need for this type of compensation during negotiations. Some agreements explicitly state that the damages are not taxable. 

Even before you settle a personal injury lawsuit, consider consulting with your special needs planning attorney. Or you may want to direct your personal injury attorney to connect with them. Your special needs planning attorney can offer guidance on settlement planning.

If you have suffered an injury that has resulted in disability, you may qualify for public assistance. Your special needs planner can help identify the benefits programs for which you are eligible. They will have expertise on how a settlement might affect certain government benefits, such as Social Security Disability Insurance.

They also can assist you in establishing a Medicare Set-Aside trust when necessary. (These types of arrangements hold settlement money for future medical bills.)

According to a report published this month on Medicaid disenrollment by the Center for Children and Families, nearly 600,000 Florid children have been disenrolled from Medicaid since the pandemic protections theat provided for continuous coverage of Medicaid throughout the COVID-19 pandemic were eliminated by the Consolidated Appropriations Act (CAA) on April 1, 2023. Thereafter, some states started hastily removing many Medicaid-eligible children from its rosters.

Nationwide, by December 2023, nearly 4.16 million children had been disenrolled from Medicaid, with Florida, Texas, Georgia and California seeing the largest declines. Many of these children were provided coverage through the Medicaid/CHIP program, but others categories of affected individuals include those who received Medicaid under Disabled Adult Child benefits. The Disabled Adult Child program is a SSA-eligible determination that allows Medicaid coverage to continue, despite being ineligible because the child now receives a higher Social Security check due to the death or retirement of a parent.

It appears that many who received such notices have moved to the Florida KidCare program. As of April 2024, nearly 182,000 children have enrolled in Flordia KidCare, which represents a 66% increase year-over-year from 2023. But this still leaves a significant number of children possibly uninsured.

Florida is currently facing a class-action lawsuit filed by the Florida Health Justice Project. If you believe that you have received a termination of CHIP/Medicaid that might be incorrect, the Florida Health Justice Project has created a toolkit that guides parents on what they need to do. Included in the toolkit is an email template where you can request an appeal.

However, if you lost coverage of your Medicaid as a result of being a Disabled Adult Child and your Social Security payment increasing above the SSI amount, and you feel you were inappropriately included in the recent unwinding of Medicaid rosters in Florida, please reach out to our firm, as we are actively working on finding a solution to these issues.

Young woman with Down syndrome smiles with smartphone in hand while sitting on sofa.Half of Americans report that access to affordable housing is a problem in their community, according to the Pew Research Center. For families affected by disability, housing costs can pose a particularly significant concern. According to the Center on Budget and Policy Priorities (CBPP), more than 4 million people with disabilities are part of families that put more than half of their household incomes toward rent and utilities. 

In the United States, 5 million people rely on Section 8 housing vouchers to help pay rent. This includes families affected by disability, the CBPP reports. Meanwhile, the Urban Instituteestimates that 18 million people with disabilities may qualify for assistance that they do not receive. 

Many low-income people with disabilities use special needs trusts (SNTs) to maintain eligibility for public assistance programs such as Medicaid and Supplemental Security Income (SSI). While you can qualify for the Section 8 voucher program with an SNT, it can affect how much housing assistance you receive. 

What Is Section 8 Housing?

The Housing Choice Voucher Program, or Section 8 Housing, is the nation’s most significant source of rental assistance. The program aims to provide affordable, safe, sanitary housing to low-income families, seniors, and people with disabilities. 

Section 8 of the United States Housing Act of 1937 established the program. The Housing Choice Voucher Program is the formal name. However, many people refer to it as Section 8 because of the legislation that created it. 

A Section 8 housing voucher’s amount varies. It can depend on household income and size, local housing costs, and the Fair Market Rent (FMR). (The Department of Housing and Urban Development (HUD) calculates new FMR rates each year; they differ by region.) Typically, when families pay 30 percent of their income toward rent and utilities, the voucher covers the remainder up to the FMR’s limit. 

Special Needs Trusts 

Many people with disabilities have special needs trusts (SNTs) in place. Some individuals who establish SNTs may, for example, have received a sizeable settlement in a personal injury lawsuit. Because these assets are in an SNT, they can still qualify for needs-based government assistance like Medicaid and SSI.

Special needs trusts typically pay for goods and services that Medicaid and SSI do not cover. This may include such expenses as education, recreation, hobbies, and transportation. 

People with SNTs can also obtain Section 8 housing vouchers. However, withdrawals from a special needs trust can count as household income; in turn, this impacts how much one’s housing voucher will cover. The more income a household receives in a particular location, the less the voucher covers. For example, if an individual receives $200 monthly from a special needs trust, that is part of their household’s income. 

Often, trustees pay the beneficiary’s bills directly from the trust. Distributions from a special needs trust count as income whether the trustee gives the money to the recipient or uses trust money to pay the beneficiary’s bills. 

Assets do not disqualify households from Section 8. However, HUD uses the standard increase in asset value to calculate income. Annual income, per HUD, can affect the amount of one’s housing voucher. (Read more about income limits on the HUD website.)

How to Apply for Section 8 

Contact your local Public Housing Agency (PHA) to apply for the Housing Choice Voucher Program. HUD provides an agency directory online. 

Completing an application involves supplying documentation on your family composition, income, and assets. In addition, you will need to provide identification, your Social Security number, and proof of citizenship or immigration status. 

After applying, it can take months or even years to receive a voucher depending on how long the wait list is in your area. The need for vouchers typically exceeds government resources. The PHA may close the list when many families are waiting.

Speak with Your Special Needs Planning Attorney 

Note that different types of special needs trusts come with certain limitations. They also may follow different rules, depending on where you live. Be sure to work with your special needs planner when establishing a special needs trust.

Your attorney can also help you through the process of applying for the housing voucher program. They can help you determine how your particular SNT could affect your housing voucher.

[Original Post on June 4, 2024]

The solution of the DAC being illegally counted by Florida Medicaid could be remedied by SSA.  We have started the process to petition SSA to change its rules to do that.

However, that process is going to take much, much longer than we anticipated.

Therefore, we are suggesting to all families in the interim that they appeal the denial of continuing eligibility for Medicaid after receipt of DAC benefits (their statutory right) to the Florida Medicaid agency, requesting a Fair Hearing before a DCF Hearing Office, and using the Medicaid Manual provision below:

2040.0808 Protected Medicaid for Disabled Adult Children  (MSSI)

Effective July 1, 1987, disabled adult children who lose their SSI benefits because of an increase in or receipt of Social Security disability benefits under one of their parent’s work records, may continue to be eligible for Medicaid if the disabled adult child meets all SSI criteria except for income; and has income equal to or below the SSI FBR when, beginning July 1, 1987, any increase in SSA benefits or receipt of SSA benefits is subtracted from other income.

The phrase “except for income” means that Medicaid is NOT to count the DAC income.  The child has to remain “otherwise eligible for SSI but not the SSI check”.  So keep the countable assets under the $2,000 limit.  Put any excess assets into an ABLE account.

The phrase “Otherwise eligible” is from the state statute on Mandatory Medicaid below and the federal SSI statute.

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). This category includes a low-income person age 65 or over and a low-income person under age 65 considered to be permanently and totally disabled.

We have not lost a case for a Disabled Adult Child appealing on the above basis.  If you want us to represent your child, our fee is $3,500.