Pgh Lesbian Correspondents

I am one of 9+ million Americans deemed totally and permanently disabled by the Social Security Administration. I was 40 years old at my date of disability. I am 54 years old.

Today, I receive a monthly allotment of $1500 after I paid for mandatory Medicare. I had/have full health insurance coverage through my spouse. But this was pre-marriage equality. She is seven years older than me. If I postponed enrolling at age 40 and waited until I was 60 when retired, I would face a penalty of nearly $20k.

It was cheaper to get a very modest Medicare policy. But infuriating, another example of the discrimination of the lack of marriage equality.

Let’s back up because it is very important to understand how privileged I was. My former employer offered both short term and long term disability insurance, paying me 60% of my salary for 24 months. So I could pay the bills. Plus my spouse worked.

The insurance company also assigned me a lawyer to advocate for my SSDI application. She knew my case and the system. I was approved immediately.

That never happens. Be thoughtful about st and lt insurance. You never know.

We were a two women household averaging $.80 on the dollar for what men earned. We lost 40% of my $40k income as a social worker. It was an adjustment.

There was an emotional adjustment as well, one that took years to reconcile. It was not helped by navigating a terrible system. As a social worker partnered to a lawyer, it was still very tough. I struggled with feeling dependent and resented that dependency. I came up with all sorts of cockamanie schemes to feel like I still had value, I could still contribute. It took years to come to terms with being disabled, to realize I’m not a broken person, and to stop expecting everyone else saw me through that same lens.

The biggest challenge are reviews. They come sporadically. Typically they require me to schedule an assessment with their psychiatrist and will not allow my spouse to come. Then there’s reams of paperwork. Handwritten. As a person whose disability has a side effect of a hand tremor, that’s definitely not easy.

My therapist(s) and psychiatric med provider have to submit reams of paperwork, I believe by fax, an activity for which they can not bill.

Usually, the paperwork is accepted, the appointment canceled and I continue my life.

Sometimes the state requests a review. One year, I had three reviews. Other years, nothing. Nothing is predictable.

One time I didn’t complete or submit a form so they cut my benefits. My partner spent hours on the phone resolving that issue.

I had to go in person to the Downtown office. I arrived nearly an hour before they opened and was not first in line. Fortunately, the staffer fixed my problem and I was sent on my way. But I cannot forget the way my stomach dropped, my fist clenching the necessary paperwork, and the fear of something going wrong. I was also surrounded by people in much more dire straits and struggling to follow protocol.

It is like a cattle call.

The SSA phone system is awful. Hours upon hours. Every letter I receive is signed Mr. Dupree or Mrs. Anderson with no personal contact information. I suspect these are not real people. I don’t feel like a real person so I’d suspect staff aren’t treated well. The interactions with staff aren’t terrible, but connecting with them is.

Then there are adjacent programs like student loan forgiveness. I started that process immediately after approval in 2013. It stalled. I let it go and made modest payments for five years.

One day over 40 checks from the Treasury Department arrived. Each one was a refund of those five years of payments. No letter, no explanation. We took the checks to the manager of my bank to confirm their legitimacy before depositing.

I spent more hours on the phone with two student loans forgiveness offices trying to get clarity. Turns out I had one $300 loan not included in my consolidation. It was easier to pay it in full than deal with more rounds of phone calls.

Then there’s Medicare. Payment is slow and confusing b/c I have private insurance. I can’t meet my deductible because of Medicare. They send my three pieces of paper via snail mail for each payment. Even if they make no payment.

When something like durable medical equipment is approved, like a nebulizer, I am forced to have a stranger in my house treat me like an infant explaining the machine to me. I receive endless mailings of albuterol even though I don’t need it daily.

I went to my orthopedic office and needed a knee brace. They had the highmark contract to approve them, but not the Medicare contract. I had Medicare and Highmark. Too bad. I was given an address near the airport to get my brace.

I don’t know anyone who commits fraud. I do know waste is embedded in the system on the governments end. It would be great to send me one piece of paper or better yet email me my statements.

It would be humanizing to use language that doesn’t presume I’m milking the system. That doesn’t waste my time and the doctors time for appointments they don’t intend to see through. To use scare tactics that I could lose my benefits.

Totally and permanently disabled does not mean I’ll suddenly recover enough to make widgets no mtter what Social Security says. My health will deteriorate because I have chronic illnesses. I may manage my symptoms better with treatment, but I’ll never be whole again. According to a 2022 study, the average life expectancy for people with bipolar disorder is around 67 years compared to 79 years for the general population.

I do work hard every day, unpaid both on my recovery and health management as well as community work.

I would never have worked through all of this without my spouse. Her skill set was invaluable, her support was unwavering. Her decision to end our marriage and relationship leaves me quite anxious about future rounds with these systems. But I will find other supports.

All of this institutional trauma and I know how privileged I have been. Good doctors and therapists. Insurance and an experienced lawyer. My own recognition this needed to happen even though a cascade of emotions rippled through me.

I’m worried that when our divorce is finalized and I must rely solely on Medicare, a new series of concerns will challenge me. Medicare approves very few therapists per geographic area. Being able to choice a modality or office convenient is not an option.

I found a Medicare approved primary therapist while my trauma therapist keeps applying. She’s really nice and knowledgeable, but her professional style is not the best fit with me. But I no longer have the luxury of being choosy. I’ll take skilled and knowledgeable over most characteristics. This is going to be a big issue as Gen X and Millennials hit that age wanting therapy. I learned Medicare and Medicaid reimburse at a competitive rate, so that is not the issue.

This is a news story, but one that involves poor people and disabled people both of which are much less sexy than the co-Presidents setting America on fire.

If you are in therapy, ask now if they are Medicare approved. Don’t wait.

I’m 54 and every doctor I see moving forward will need to be Medicare approved while the clock on my spousal benefits winds down.  That’s exhausting. My PCP is a community clinic so I’m staying even when the care is subpar b/c … disabled poor folks don’t get a lot of choices.

How would I be able to live on $1500/month? Affordable housing programs are drying up. Bus service is being cut.  I couldn’t afford a cell phone or FIOS or carfare for ride shares. Medicine co-pays would increase. That’s my personal expenses. What about my blog that mostly comes from my pocket? What about beauty, culture, and craft work that makes life meaningful?

I don’t know to expect. Grateful that AARP is organizing. Very aware that disabled people will be picked first for the anti-fraud programs.

Do you think DOGE actually believes someone can be fully impaired with mental illness, but function somewhat? That I can’t be forced into a workshop setting? That anything I’ve ever written on my blog has value. Of course they don’t. But they are not seeking out individuals like me on a personal level. I just might be caught up in systemic cruelty.

I am scared that reviews are doing to be more witch hunt than administrative quagmire. That the hoops will be set afire and designed to burn, burn, burn.

But the advantage I have is that all of my therapy and recovery work to help me navigate this new reality. I’m not powerless.

And that’s what they want, right? They want the most vulnerable among us cowering in fear, grasping at crumbs, and feeling no power over our lives. Taking away our income and health insurance would go a long way to accomplish that.

There’s a critical mistake in that thinking – people with disabilities are quite strong, adaptable, and capable. Survival has taught us those skills. Anyone who deals with the Social Security Administration knows when to swallow your pride and when to speak up. We are good at researching, networking, and sharing. We have to fight for the simplest step – literally, living in a City filled with “one-step” entrances and no enforcement of the ADA to give us our access.

The way our society begrudges poor folx for survival skills is deplorable. The data shows that fraud by recipients is so small it is not worth the resources to investigate it. The real fraud is made by health providers, health insurance companies, and – in terms of food stamps – store owners. But that’s a conversation we typically apply to the middle class not poor folx, much less disabled folx.

Nine million of your neighbors depend on SSDI for survival. 7.4 million rely on Social Security Insurance. and 69 million neighbors are on Social Security retirement benefits. It is an enormous swath of people. The system needs to repaired, not made redundant by cruel overlords who will perpetually underestimate us because we are poor.

Like they always have.

I will be forever grateful that I had so many resources when I needed SSDI – the insurance, my spouse, my own social work skills, and a good treatment team. Things have changed, but I know I can cope even thrive.

If you are struggling with Social Security or disability, please reach out for help. There are Facebook groups for mutual aid. Pennsylvania Health Advocacy Network, and the Disability Rights Pennsylvania group.

I can’t emphasize enough the importance of mutual aid groups – from true talk about local lawyers to lists of food pantries, to real help in a crisis, and beyond.

If you read this blog or follow me on social media, remember that I am one of “those people.”