The Impact of the SSDI Application Process on Applicants, Caregivers and Families

By Missy Biggs

Applicants, caregivers, and families experience unexpected support and frustrations during the Social Security Disability Insurance benefits application process. On the one hand, each family member (including a spouse, divorced spouse, children, and adult children disabled before age 22) may be eligible for a monthly benefit of up to 50 percent of the disability benefit amount. Yet SSDI applicants may experience emotional pain while they wait for their SSDI application to be approved.

Carol Harnett, president of The Council for Disability Awareness, hosted a podcast with Chris O’Connor, general counsel and cofounder at Citizens Disability (a member company of The CDA), about the highs and lows of the SSDI application process, especially as it pertains to how family members, friends, and caregivers can support an applicant. Chris oversees client advocacy at Citizens Disability and has been a trial advocate for 20 years. He tried cases in all levels of state court and represented thousands of injured people before various administrative agencies that assess disability, including the Social Security Administration.

Click hear to listen to the podcast.

Social Security Disability Insurance isn’t an entitlement; it’s an earned benefit

[2:12] “Everybody who works pays into the system through FICA or Medicare taxes. In exchange for taking that money, the government is making a promise that if something happens to you and you can’t sustain work anymore, they are going to provide you with some support both financially and medically. And benefits associated with this program aren’t just for injured workers; there are parts that go towards family members and particularly minor children.”

Steps involved in receiving an award of SSDI benefits

[5:03] “The general proposition is you apply and it takes three to six months to get an initial determination. Around four out of five are denied initially, so there is a big bucket of people who have to appeal that.

“It takes another three to six months to get a decision on your first appeal. A smaller percentage of people are approved at that level and finally there is a third stage of the appeal, which is called a hearing, where you get to present your case to an administrative law judge and that takes about a year.

“So from start to finish you are looking at anywhere between eighteen and twenty-four months – from the time that you apply for disability until you have the best opportunity to be approved.”

But there’s a silver lining

The Social Security Administration has made some progress in the midst of the COVID pandemic by reducing the timeframe.

The benefits of having an SSDI advocate

[6:14] “We see countless folks who get stuck in this cycle of applying and getting denied, reapplying and getting denied. They never take that next step to appeal and then appeal again…. [But SSDI advocates] make sure you make it to the end.”

Personal and emotional challenges for SSDI applicants

[7:00] “Our identity is our work in many instances. And when you remove that from someone’s life there’s a big hole, and it impacts people. It’s almost an invariable truth that folks who go out of work with bad backs, or kidney disease, or really serious physical problems. And they almost invariably develop some level of depression—and it’s often a level of depression or mental health situation that are impactful on their ability to function day to day . . .

“It’s incredibly important for folks going through this to have support from loved ones and friends — the people who are most important to them and who are around them.”

Providing necessary emotional support to people navigating the SSDI approval process

[11:46] The issue of mental health.

“It’s often a struggle to get folks to have the self-insight to be able to appreciate they are struggling with mental health issues. They will say ‘I have a bad back, I don’t have mental health issues.’ Because there is a stigma associated with it [mental health issues]. I think my role as an advocate is to say this is normal; this happens all the time. Mental health conditions are no less real than physical problems . . .

“I’ve had shouting matches with guys who are construction workers or truck drivers who refuse to go see a psychiatrist, psychologist or acknowledge they have these kinds of problems.

“I strongly encourage people who are related to or interact with folks who are going through this disability process to be aware and look for signs and symptoms and indications that someone may be struggling with mental health issues (with something that was initially a physical problem). And to encourage them to seek the help that they need.”

How family members can advocate for loved ones who may not have the full capacity to advocate for themselves

[14:27] “We will often ask to talk to someone’s spouse, to someone’s child if they are old enough, or someone who knows them to get a better sense of how their conditions affect them because people are not necessarily the best at advocating for themselves . . .

“With mental health stuff, memory and task completion is often a problem, but they don’t appreciate that memory and task completion is a problem. I can’t tell you the number of clients I had that started fires while making simple meals on a stove because they forgot that it was on a stove. That is a simple occurrence across hundreds and hundreds of claimants I have worked with over the years. They will not be in a position to effectively advocate for themselves because they don’t see it as a problem.

“So relying on other people who know them and interact with them frequently to get a better and more complete sense of how their conditions impact them is really important to presenting the best case for the folks who we are working with. Family and friends are incredibly important in that perspective.”

How the SSDI program can be an advantage for applicant’s retirement

[21:03] “If you stop working at 40 and don’t get your SSDI benefits, they are going to pay your retirement based on your earnings record, which ends at 40. There’s a big gap there, a big hole. And what the SSDI program does, is it eliminates those and calls them zeros . . .

“We deal with folks in their 60s and have opted for early retirement instead of filing for disability benefits. We encourage those folks to file for disability benefits because if they can be approved, they will receive disability benefits up until their full retirement age. Their full retirement amount will be increased because they won’t have those zeros or have the opt-ins for early retirement at 62. A few hundred bucks a month makes a huge difference, in terms of the lifestyle that you’re going to lead.”

More information on the importance of emotional support

[22:58] “At our company, it’s a job to find substituted parties for people who die while they wait in line for their chance to get disability benefits. In April alone, we had 60 folks who are our clients, who died at various stages of the process while they are waiting for benefits, Life expectancy for those who suffer from disability is significantly lower than it is for the general population.”

The financial hardship associated with waiting for SSDI benefits to go through

[24;19] “People don’t have a lot of savings in reserves. If you are the average person making the average salary, you don’t have cash in the bank to keep you floating, keep you going for 12-24 months. That struggle to survive during that period while you are waiting to get approved for benefits takes a tremendous toll on people, emotionally, and physically. Everything is amplified because you’re worried about having a place to live, having heat, you’re worried about all kinds of things . . .

“One of the very first cases we won at Citizens Disability (when we started in 2010), the retroactive reward that the claimant got was able to get his house out of foreclosure. He was a week away from being thrown out of his home that he had been in for 20 years. Because he was awarded benefits he was able to get enough money to get current on his mortgage, but if it had been one more week he would have been homeless.”

Key Takeaways

[28:02] “For me it’s awareness of folks who are struggling with physical and mental problems that are preventing them from working. That there is a program, that there are people, who can help them. And that there is light at the end of that tunnel — they just have to stick through it and make it to the end.

“Maybe, even more importantly, it’s to make folks who have family members or friends who are going through this process to be aware of and to think about what those folks might be going through. To place themselves in their shoes and to be available and to be a resource. To be helpful and supportive and to do what they can so the folks dealing with the disabilities can feel support enough to make it through the end.”

Click here to listen to the podcast.