What you need to know about Social Security's benefits for disabled children

A parent's guide to the confusing world of Supplemental Security Income

“It’s a nightmare.” — Mellani Calvin, Social Security advocate since 2001

The idea for Social Security started in 1933 as a letter to the editor from a California doctor.  

Dr. Francis Townsend came up with the plan for a guaranteed retirement income after watching three elderly women pick through trash for food.

It snowballed rapidly. The core idea was so motivating that in just two years it became a national law.

It started out simple enough: just help people. Give them money. Simple.  

Decades later, it is the mess we know today. 

Non-retirees who qualify for benefits are extremely poor and the checks are very low. The application process is laborious, lengthy and usually unsuccessful. The resource limits mean Americans with disabilities are often stuck in a poverty trap, unable to ever save or make enough to provide for themselves.

Before I fell through the looking glass into Special Needs World, I, too, had a vague idea that in America we took care of disabled people. That Social Security offered some sort of soft landing for the vulnerable and unfortunate. 

I had no idea just how wrong I was.

My personal introduction to the Social Security Administration came in the first six months of my babies’ lives. Over the course of that time, I had 16 social workers (yes, 16, I counted) and many of them advised me to look into SSI to see if we qualified. None of them knew what the requirements were. So one day, in between diapers and doctors’ visits and countless sleepless nights, I finally began the lengthy process. It ended up as yet another wild goose chase.

First, you have to understand the incredibly confusing acronyms. The SSI I’m talking about here is Supplemental Security Income. The SSA (Social Security Administration) doles out this money. They also manage the much-more-famous Social Security benefits for retirees and their heirs, called “Old-Age and Survivors Insurance” or “Retirement Insurance Benefit.” This public pension system is what most people mean when they say “social security.”

If that weren’t confusing enough, SSDI (Social Security Disability Insurance) is for workers who become disabled. Disabled children and adults don’t qualify for this if they have never worked in the labor market.

SSI — the program we are talking about here — is paid for out of general tax funds and not the Social Security trust that everyone talks about “running out of money” (though that is debatable).

Applying for SSI starts with a 23-page paper application or you can fill out an online application. Less than half (43.5 percent) of applications for disabled children were approved in 2018 but that’s still a lot better than the just 30.4 percent for adults. 

Mellani Calvin is a friend of mine and executive director of a Portland, Ore., nonprofit that helps some of the hardest-hit folks get their benefits. Even as non-lawyer advocates, ASSIST has had a 78 percent success rate with hundreds of clients over their decade in business — more than twice the national average. 

Calvin says the key to their success is an avalanche of evidence.

“We just paper the case,” she says. “SSA is not used to families or individuals advocating for themselves, (but) because it’s your claim, you get to send anything you want.”

In other words, Calvin helps people get benefits by preparing like she’s going to court. The average ASSIST application, Calvin says, takes about 25 staff hours plus another 10 hours for the client.

She has her clients’ doctors write detailed letters outlining their functional deficits. This can be difficult because it is unpaid work for the clinicians, but she says those are key. Without detailed letters, Calvin argues SSA staffers (or, rather, their contracted agencies, called Disability Determination Services) essentially “guess” from medical records that often don’t include the pertinent information. 

No one from SSA or DDS meets the disabled children before granting or denying benefits. They have a phone call with an overwhelmed caregiver about their financial picture and, at most, ask them to go through yet another doctor’s visit to verify their claim.

SSA’s budget request, however, appears to hint that the agency is aware of its systemic problems. The message to Congress lauds lowering its average decision times from a staggering 605 days in 2017 to an estimated 310 days this year.

The budget request also underscores how costly it is to make people go through the appeals process after a wrongful denial. “Hearings are the most expensive part of the disability process. We must ensure that we make fair, policy-compliant disability decisions supported by the most efficient, modern business processes,” it says. 

The SSA is also gearing up to study the barriers to work for disabled adults and children, as well as the barriers to accessing benefits. Disability advocates have long claimed that SSI keeps recipients stuck in a cycle of poverty and even bars them from getting married.

To give you a ballpark idea, a two-parent household with two kids, one of whom is the SSI recipient, can earn up to $53,904 in wages before their SSI check reaches $0. (See a chart in the middle of this webpage.) That may not sound too bad, but there is another limit that is very clear: the disabled child may not live in a household with more than $2,000 in resources, or $3,000 for a couple.

“There is no tolerance for any amount above the resource limits,” SSA regional spokeswoman Shayla Hagberg wrote in an email to Medical Motherhood. (She notes that several types of assets are not counted as resources but most types of savings, a second car or even a life insurance policy are.)

The $2,000 cap ($3,000 for a couple) was passed in 1984 and enacted in 1989. If those limits had just kept up with inflation, they would be $5,241 and $7,862 today.

My family may have qualified under those inflation-adjusted limits when I first called SSA. But we didn’t qualify under the actual limits. Not even when we were on food stamps and living in a tiny 2-bedroom house worth $40,000 less than our mortgage.  

So it’s surprising and depressing that even with such a low bar for the amount of savings a family can have on the program, more than 1 million U.S. children receive some amount of SSI — that’s 1.4 percent of all Americans under the age of 18. Seventy percent of those qualify because of a mental condition, like autism or ADHD, as opposed to a physical disability. Children make up almost 13 percent of SSI recipients. (source)

Once a parent gets their child’s application through the gauntlet — or perhaps goes through the even-more-laborious appeals process — what do they get? A maximum benefit of $794, or less than $10,000 per year. (Some states supplement this payment. In Oregon, where I live, they are called “Special Need payments.” They aren’t much.)

That is the maximum amount. Payments are lowered the more income parents have. In April 2021, the average monthly payment to families of disabled children was $694.80.

The entire SSA has a mind-boggling $1.2 trillion budget. SSI alone has a $62.7 billion budget, nearly 8 percent of which ($4.8 billion) is spent on administration. 

It’s unclear how much of those SSI payments are for children. But by taking the number of children on SSI here and the average monthly payment here, I get roughly $8.86 billion in annual benefits for these, the poorest and most disabled American children. For comparison, that’s about two-fifths of what the U.S. sends abroad in foreign aid each year.

A simple system, born of compassion. How far Social Security has strayed from that ideal.

Independent information is fueled by independent funding. Journalism like this takes people like you to become subscribers today. Thank you.

Have a question or a tip? Email me at shasta@medicalmotherhood.com.

What I’m reading this week

A round-up of news for parents of disabled children.

• From The New York Times: To Keep Their Son Alive, They Sleep in Shifts. And Hope a Nurse Shows Up

Between June and October 2020, Carolyn Foster, a researcher and pediatrician at the Ann and Robert H. Lurie Children’s Hospital of Chicago, surveyed parents of medically fragile children and found that half had lost home health care services during the pandemic. And patients with the most complex conditions often have the hardest time finding capable staff.

“The most vulnerable families were made all that more vulnerable,” she said.

• From the San Diego Union-Tribune via Disability Scoop: Teen Math Whiz With Disability Accepted To Harvard, MIT And Caltech

Determined to keep her son alive and give him every opportunity for success, Huang quit her job a few months after Lou’s diagnosis and has been his full-time caregiver ever since. She has used traditional Chinese and Western medicines to help her son recover from bouts with respiratory infections, kidney stones, bone fractures and dislocated joints. She alternates 12-hour shifts with medical caregivers so she can rest at night.

• From the National Center for Biotechnology Information (2020): The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders

“Preliminary work from Casanova et al. [16] also suggests that autism and EDS/HSD co-occur within the same families. The researchers found that more than 20% of mothers with EDS/HSD reported having autistic children—a rate not significantly different from those reported by mothers who themselves are on the autism spectrum.”

Enjoying Medical Motherhood? Someone else you know would too. Give a gift subscription today!

Give a gift subscription

Visit the Medical Motherhood Spreadshop

Follow Medical Motherhood on Facebook

Follow Medical Motherhood on Twitter

Follow Medical Motherhood on Instagram