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The views on this page are solely my own and do not necessarily represent the views of any other person or organization.

About your advocate, Devon Wieters

Devon is a college graduate, writer, and podcaster who just happens to have cerebral palsy. She is passionate about creating a better world for all! She is also fiercely advocating for the passage of the SSI Restoration Act, which would eliminate the Social Security/Medicaid “marriage penalty” and allow adults on SSI to get married and live together and still qualify for Social Security and Medicaid and the Marriage Equality for Disabled Adults Act, which would do the same thing for Medicaid itself, allowing those who are on SSDI and not SSI (the difference between the two is explained below) to get married without losing benefits. These changes would allow people with disabilities to work and marry without losing vital disability benefits that provide things like funding for needed Medical equipment and people to help them with daily care tasks. Devon is also a super fan of the TV show Survivor and loves analyzing the strategy of the game with the fan community. In fact. she learned her interview techniques from watching host Jeff Probst!

I have three things that I want to see change regarding federal benefits. I am specifically referring to Social Security and Medicaid.

First…

Did you know that marriage is not equal under the law in the United States? Technically, you can legally get married if you receive government benefits, but right now, it isn’t practical.

This is because most disabled people cannot get married without having vital benefits like Supplemental Security Income (SSI) and Medicaid severely reduced or even eliminated altogether, as the asset limit is a mere $2,000 for singles and $3,000 for couples. The income limits vary slightly by state, but they are extremely low and often equivalent to a starting salary. These limits apply whether or not your spouse receives services. Receiving SSI is often the only guaranteed way to qualify for Medicaid long-term services and supports (LTSS). Additionally, retirement accounts currently count as assets, which makes it nearly impossible for people with disabilities to save for retirement.

The good news is that there is proposed legislation to fix this. The SSI Restoration Act and the Marriage Equality for Disabled Adults Act are two of those pieces of legislation.

The SSI Restoration Act would eliminate the marriage penalty, raise the income and asset limits to qualify for services, increase benefits, and exempt retirement accounts from being counted as assets. It would modernize outdated SSI rules and allow people with disabilities to build financial stability without losing critical support.

The Marriage Equality for Disabled Adults Act would allow disabled adults to marry without losing essential benefits like Social Security and Medicaid. It would also prevent spouses’ income and resources from being counted against each other and protect continued Medicaid eligibility after marriage.

Together, these bills would help ensure that people with disabilities do not have to choose between love and the services they need to live independently.

Watch the videos below and watch Patrice: The Movie on Hulu to learn more and take action by writing your representatives by clicking here
Note : I do not know if the qualification process described in the John Oliver video is accurate because I was a minor when I first applied for Medicaid so my qualification process was different. Additionally, he is most likely describing the qualification process for Social Security Disability ( SSDI) as opposed to Social Security income (SSI) ( the difference between the two is explained below) However, the limitations that individuals must live under when on the services are accurate.

Watch John Oliver hilariously explain disability benefits and the issues with them below!

Watch the Wheel With It Podcast episode with Ted Passon and Kyla Harris, the director and producer of Patrice: The Movie below!

FAQ - Disability and Marriage

Frequently Asked Questions

What's the difference between Social Security Income (SSI) and Social Security Disability Income (SSDI)

Simply, SSI is for people with disabilities that have not earned the required number of work credits. SSDI is for people who have earned the required number of work credits. You can earn up to four credits per year. The number of credits you need to earn before qualifying for disability varies based on the individual's disability.

What's the advantage of being on SSDI versus SSI?

Simply, SSDI recipients are allowed to write off work-related expenses. For example, if you needed a $4000 software that made your computer at work easier to use then you could write that off as a work related expense and it would not be counted against you as income. Also, all 50 states now have special savings accounts for people with disabilities that are exempt from being counted against you as income or assets. In Virginia it's called Ablenow. Individuals on SSI are only allowed to have up to $100,000 in that account. Individuals on SSDI are allowed to have up to $550,000 in that account.

What happens when an SSI or SSDI recipient gets married?

If a person receiving SSI or SSDI. gets married, they will receive 25% less in benefits than they did as an individual. The theory is that a couple can live on less income together than they would as individuals. The asset limit for a couple is $3,000. With Social Security payments already being so low for many, this reduction would take many people's payments down to zero.

Does the marriage penalty only impact Social Security benefits?

No! Marriage & romantic partnership may also mean losing Medicare or Medicaid, Long-Term Services and Supports (LTSS) like Medicaid Home & Community Based Services, medical equipment like wheelchairs, and personal care attendants because, in most cases, you must be receiving Social Security or food stamps to qualify for benefits like Medicaid. In short, the only guaranteed way to qualify for Medicaid/ Medicaid LTSS is to receive Social Security and/ or food stamps, which require you to live unmarried and separately from your partner

How much money can you get with SSI or SSDI?

In 2025, the federal maximum monthly stipend for SSI is $967 for an individual and $1,450 for a couple. An individual also cannot have over $2,000, and a couple cannot have over $3,000 in assets. These asset limits have not been changed in 35 years. Here is how an individual's SSI payment is calculated

SSI Income & Living Rules (Simplified)

What counts as income?

Income is any money you receive
Two types:
- Earned income: wages, self-employment
- Unearned income: Social Security, pensions, VA benefits, etc.
The more income you have, the less SSI you get

Whose income counts?

Your income
Your spouse’s income (if you live together)

How income reduces SSI

Unearned income

First $20 is ignored
The rest reduces SSI

Example:

$200 → $20 ignored → $180 counts

Earned income

First $20 is ignored
Next $65 is ignored
Only half of the remaining amount is counted

Example:

$300

→ $20 ignored = $280

→ $65 ignored = $215

→ Half counted = $107.50

When income affects SSI

Income from 2 months earlier is used
Example: April income affects June SSI
Special rules apply when first starting SSI

Living situation rules

Category A – Living in your own household

You live alone or pay your own way
Full SSI amount

Category B – Living in another person’s household

Someone helps pay for food or housing
SSI reduced by about one-third

Category C – Child living with parents

Under age 18 and living with parents
Standard SSI rules apply

Category D – Medicaid facility

Living in a medical institution where Medicaid pays most costs
SSI limited to $30 per month

Key takeaways

SSI is based on financial need
More income means lower SSI
Earned income is treated more favorably than unearned income
Living situation can reduce SSI
SSI uses a two-month look-back for income (for example, income you earn in April will affect your June SSI payment)
Here's how a person's SSDI benefit is calculated:
How SSDI Payments Are Calculated
SSDI benefits are based on your Average Indexed Monthly Earnings (AIME), which is a calculation of your lifetime earnings up to the point you became disabled. The SSA adjusts your historical earnings for inflation, then averages the highest-earning years to determine your AIME. Once your AIME is calculated, SSA applies a formula known as the Primary Insurance Amount (PIA) to determine your monthly benefit amount.

The formula is progressive, meaning that it replaces a higher percentage of your lower earnings and a lower percentage of your higher earnings. Here’s how the PIA formula works in 2024:

90% of the first $1,115 of your AIME.
32% of your AIME between $1,115 and $6,721.
15% of your AIME above $6,721.
Example Calculation
Let’s say your AIME is $4,000. Here’s how SSA would calculate your SSDI benefit:

90% of $1,115 = $1,003.50
32% of the amount between $1,115 and $4,000 (which is $2,885) = $922.20
Total monthly benefit = $1,003.50 + $922.20 = $1,925.70

Factors That Can Affect Your SSDI Payments
Cost of Living Adjustments (COLA): Each year, SSA adjusts SSDI payments based on inflation. In 2024, SSDI recipients will see an increase of 3.2% due to COLA.
Dependents: If you have dependent children or a spouse, they may be eligible to receive benefits based on your earnings record. Typically, dependents can receive up to 50% of your benefit amount, although the total family benefit is capped.
Work History: SSDI benefits are higher for individuals who have worked longer and earned more over their lifetime. If you have a shorter work history or lower earnings, your SSDI benefits will be smaller.
Tips for Maximizing Your SSDI Benefits
Provide a Complete Work History: When applying for SSDI, ensure that you provide SSA with a complete work history, including all employers and periods of employment. Missing information could lead to an underestimation of your lifetime earnings.
Monitor COLA Adjustments: Stay informed about annual cost-of-living adjustments (COLA) to make sure your benefit amount reflects inflation increases. SSA typically announces COLA changes in the fall, and they take effect in January.
Check for Dependent Benefits: If you have dependents, such as children under 18 or a spouse, make sure to apply for dependent benefits. This can increase your family’s overall monthly income.
Common Mistakes to Avoid
Not Reporting All Earnings: If you’ve worked multiple jobs or had gaps in employment, make sure to report all earnings to SSA. Missing earnings could result in a lower AIME, reducing your monthly benefits.
Failing to Understand Reductions: If you’re receiving other disability benefits (like workers’ compensation), your SSDI payments may be reduced due to an offset. Be sure to account for this when planning your finances.
Source: disability law group

What if you don't get 'legally' married? Can't you just move in together and act as if you're married?

Unfortunately, no. Social Security has what they call a "holding out" rule. Two individuals who live in the same household are considered married for Supplemental Security Income (SSI) purposes because they appear to be living as a married couple. However, some states do offer a workaround because they have a live-in caregiver option, which means you can put your partner down as a live-in caregiver. However, not all states have this, so the law needs to be changed at the federal level.

How can I support disabled people? What can I do to change this law?

Contact your elected officials and tell them that you support disabled marriage equality and the passage of both the SSI restoration act and the SSI savings penalty elimination act. These are two pieces of legislation in Congress that attempt to fix these issues.

I've heard a lot about Medicaid cuts on the news. Are you concerned?

No! While some other advocates may disagree, I personally think that these cuts will pave the way for long-lasting and common-sense reform, as they are only cutting people who are no longer alive. When President Trump took office for his second term, millions of people were marked alive in the system but were, in fact, deceased as well as millions of people who were not even legally allowed to be in the country. Those payments are what they're cutting. We recognize that hearing of cuts of any kind can be scary for the disability community, as Medicaid and other services are often their lifeline. But we encourage you to hang in there! We are closely watching the Medicaid cuts to make sure that there is no disruption to vital services for people that need them. This is my opinion and not the opinion of people that worked on Patrice: The Movie

What's the progress on these reforms? Are we making any headway?

Yes! With the popularity of Patrice: The Movie as well as the explosive Nick Shirley video (watch below), this conversation has become more and more prevalent. In fact, there was recently a congressional hearing on the growth of the welfare state, where elected officials and experts finally talked about how, in most cases, things like asset limits and marriage penalties do more harm than good for the people who actually need the services. In addition, we are ecstatic about the no tax on Social Security for seniors provision in the big beautiful bill and believe it could serve as a model for people with disabilities as well! Most excitingly, on March 5, 2026 a virtual kickoff event was held for the introduction of the SSI restoration act into the Senate. You can watch the hearing here or by clicking the youtube link below

You can watch the entire virtual kickoff event for the SSI restoration act being introduced into the Senate here

Note that some of these questions and answers were adapted from a post on the Patrice the movie Facebook page. I have verified their accuracy.

Below is the statement released by the Social Security administration less than 24 hours after the release of Patrice The Movie on Hulu (copied directly from their website)

All of us at the Social Security Administration want to recognize Patrice Jetter, Garry Wickham, and everyone involved in Patrice: The Movie, a documentary that focuses on the couple’s concerns about losing their disability benefits if they got married.
Our agency stands ready to assist Congress as it works to address outdated laws and to strengthen programs like Supplemental Security Income (SSI) that serve millions of people with disabilities throughout the country. Enacted 50 years ago, the SSI program provides payments to people with disabilities and older adults who have limited income and resources.
Congress imposes limits on SSI applicants and recipients, including asset limits for individuals and married couples that have not been adjusted since 1989. As applied today, that partial 1989 update can make it difficult for SSI recipients to save money and can cause other hardships, as the movie emphasizes.
The movie also highlights how changes to the asset limit and related marriage rules can only be made by Congress because those have been set by statute. For decades, there has been Congressional interest in updating SSI asset limits. Back in 2003, for example, a committee in Congress wanted to update limits (from $2,000 to $3,000 for individuals and from $3,000 to $4,500 for couples) and index those amounts for inflation, and there have been more recent legislative efforts as well. Again, we stand ready to provide expertise to Congress as it discusses and debates this issue.
While only Congress can make some changes, to the extent possible by law SSA is taking steps to update SSI policies administratively to simplify rules, reduce burdens, and better support people with disabilities. For example, as announced earlier this year, today is the effective date for three SSI enhancements that are estimated to lead to new or increased SSI payments for hundreds of thousands of Americans with disabilities.
The agency no longer includes food assistance from friends and family in calculating eligibility (in-kind support and maintenance). This could increase monthly SSI payments by about $131 per month for over 90,000 people and allow more people to qualify for SSI benefits.
The agency expands the rental subsidy exception to SSI applicants and recipients nationwide, which was previously applied in only seven states. This could increase monthly SSI payments by about $132 per month for about 41,000 people and allow more people to qualify.
The agency expands the definition of a “public assistance household” by adding Supplemental Nutrition Assistance Program (SNAP) benefits to the types of public assistance listed and by no longer requiring that all household members receive public assistance to be considered a public assistance household. These two changes could result in increased SSI payments to about 277,000 people and allow more people to qualify, while also reducing reporting burdens for individuals living in public assistance households.

The Roosevelt Institute published an excellent paper on the cost to implement the SSI Restoration Act and its impact. You can read the article here. You can watch the video summary of it below. You can download the fact sheet here

Second...
What's the point of having services if you can't get any of them?

Lack of funding in most states creates unbelievably long waitlists; some states have a waitlist of almost 2 decades. In addition, this lack of funding causes additional wait time to get services after receiving a waiver. Currently, there is a federal law protecting your right to live in an institution without a wait, but there's no such guarantee in the community. In January, Virginia, already one of the best states in the union for services, received a first-of-its-kind permanent federal injunction that required it to put a certain amount of funding into Home and community-based services and reach certain benchmarks. We believe that this sets a precedent for the other 49 states. We also want there to be a federal law that protects your right to live in the community if you have a waiver. While Virginia is amazing about letting you live in the community and getting a handle on their waitlist, other states are not so good at this.

Long story short:
Stop funding illegals and fraudsters and start
funding people who actually need services. For a concise explanation of how Medicaid actually works, please see part of a tweet from JD Vance below.

Embedded Text

This is important--money is fungible. Consider, for instance, two state Medicaid programs--Ohio and New York. New York gives Medicaid to illegals and Ohio doesn't.

When the government gives billions of dollars to New York for Medicaid, that frees up state money in New York that can then be spent on illegals.

It's like if you give a mobster $100 but he PROMISES you he won't spend the money to buy a gun and commit a crime. Well, he takes the $100 you gave him and buys food, and then takes the money he would have spent on food and uses that money to buy the gun instead. This is what "money is fungible" means.

Additionally, because medical services are limited in supply, when an illegal accesses health. care, it drives up the cost for everyone. So New Yorkers are paying a higher price for medical services, and the federal government is subsidizing those higher prices

And finally...
We believe the people who provide services should get paid a fair wage for their work
The job of a Direct Support Professional (DSP), the people who most often assist people with disabilities who live on their own, is not recognized as its own official profession in the United States, resulting in criminally low pay and a labor shortage. Currently, most fast food employees get paid the same wage as DSPs. This is criminally unfair, especially if you assist someone with a complex disability.

{I doubt} that the 1960s approach to welfare has made it easier for our country’s poor children to achieve their dreams. But {we} are deluding ourselves if we fail to acknowledge that it did accomplish something else: it prevented a lot of suffering, and made it possible for people like (my grandmother) and those with disabilities to access food and medicine and things like adaptive equipment and personal care attendants when they were too poor, too old, or too sick to buy it themselves. This ain’t nothing. To me, the fundamental question of our domestic politics over the next generation is how to continue to protect our society’s less fortunate while simultaneously enabling advancement and mobility for everyone. We can easily create a welfare state that accepts the fact of a permanent American underclass, one where family dysfunction, childhood trauma, cultural segregation, and hopelessness coexist with some basic measure of subsistence. Or we can do something considerably more difficult: reject the notion of a permanent American underclass.
- Vice President JD Vance in his book Hillbilly Elegy (bold parts added by me)

"We have created a system where growing numbers of citizens have become reliant upon government subsidies, incentivizing government dependency over self-sufficiency. The so-called marriage penalty embedded in the assistance programs creates a tangible disincentive to family formation."

— Dr. Ben Carson

"Programs that uphold dignity of work, strengthen... family structures, and offer real hope for upward mobility are the ones that truly serve American people."