“You don’t know what you don’t know.” This common phrase is used for a plethora of situations when people don’t know a variety of information.  Whether it’s learning about a different culture or figuring out how to fix a car, there are millions of things that people learn.  Learning something new can bring on a whole range of emotions.  It can be fun and exciting, but it can also be difficult and frustrating.   Some information is readily available and easy to access; however, some isn’t easy to find. Oftentimes, information regarding services and benefits in the long-term care system can seem sparse and confusing. 

About two years ago, I wrote an entry about trying to figure out what benefits I was eligible for.  My financial situation had just changed because a parent had just started collecting Social Security and I became eligible for the Disabled Adult Child (DAC) benefit. As the title suggests, it’s an income benefit that adults with disabilities can receive when a parent starts receiving Social Security.  I’m not going to get into all the specifics of it because honestly, I don’t know them, but it was challenging to figure out because information wasn’t readily available.

Two years later, my parents and I found ourselves in a similar situation of trying to figure things out. This time it was because I became eligible for Medicare starting in January because I have been receiving the DAC benefit for two years (again, I don’t understand the reasoning behind this but that’s what we were told).

Admittedly, I know very little about insurance things, but, in October and November, commercials started running about advantage plans for Medicare.  We started hearing about dual eligible special needs plans that were being advertised.  We knew Medicaid would become secondary, but we had no idea if I needed an advantage plan.  In late November, my parents started making calls to their insurance guy.  They explained my situation and, very fortunately for us, the guy was super nice. He was honest with us and said he didn’t know.  He suggested that we contact the ADRC.  This was such a class act because he could have easily just had us sign up for an advantage plan and take the commission on it.  If he would’ve done that, it would’ve been a disaster.  My mom has been in touch with the benefit specialist at the ADRC and she has been super helpful. Due to needing to see all the specialists and getting infusions for my baclofen pump, I’m best to just have Medicare and Medicaid with no advantage plan.  Whatever Medicare doesn’t pick up, Medicaid will. I know others who have disabilities have to worry about MAPP premiums based on income, but I don’t have those circumstances—I’ll probably always be eligible for both benefits without premiums just due to my situation.

With Medicare now being primary, I needed to be enrolled in a drug plan for my prescriptions. Again, we had no idea how any of this worked.  The lady from the ADRC told us to create an account online and I’d automatically enrolled in a drug plan.  I created an account, but I wasn’t enrolled in a plan until a few days after the new year. That took a few phone calls to figure out that it takes a few weeks for that information to appear in my account. In fact, just this week, I finally received information about the drug plan in the mail this week. For someone who relies on multiple prescriptions, it was very nerve wracking not knowing how my medications would be paid for. 

Then, when my DAC deposit came in for January, it was less than what it had been.  I logged into my Social Security account and realized that money had been taken out to pay for my Medicare premium. That didn’t make sense to my parents and I because I had been on Medicaid for years and I’ve never had to pay for anything.  It didn’t make sense that I would have to start paying now.  I tried reaching out to some of my friends who have disabilities, but everyone’s situation seems to be a little different. My mom tried calling Medicare (and was on hold for an hour) only to be told that we needed to call Social Security (which was another hour wait).  They told us that we needed to call Medicaid. Instead of spending an hour waiting on the phone, my mom called the benefits specialist to see if she knew. Luckily, she did. She told us about another program that I qualify for and will be automatically enrolled in. It turns out that Medicaid will cover my Medicare premium in my circumstances. The system is just backlogged and, once it catches up, I’ll be getting reimbursed. Again, I qualify for this specific program based on my personal income. Everyone has a slightly different situation.

It’s frustrating for me because I’m not able to call these places myself. Although more and more financial and insurance places are creating online options to communicate with people, many government agencies still don’t have email or online portals for people to ask specific questions. Due to this, I’ve had to name my parents as authorized representatives so that they can talk to these places on my behalf. While I’m thankful that they’re willing to do this, it’d be really nice to be able to do some of these things myself—especially knowing that the technology is available to make it happen!

I don’t know how people can be expected to figure all of this insurance stuff out on their own when there’s no communication as to what is supposed to happen when.  As I’ve said in previous entries, I feel like my parents and I have lots of connections and are pretty “in the loop“ about a lot of disability related things, but this isn’t one of them.  We feel like we missed an important bulletin or something with this, but, in reality as far as we can tell, we haven’t. We’re trying our best to figure this out and make sure that I’m in the right programs to get what I need.  The information is available if people know where to go for it, but it isn’t easily accessible for the average person.   

Circling back around, the saying is true: You don’t know what you don’t know. With some things, people may be okay with not knowing everything; however, with other things, people have no choice but to go to extraordinary measures to obtain the information they need to figure things out. It’s said that continuing to learn new things is good for our minds; I guess that’s part of life!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

As federal officials consider ending a program that allows employers to pay people with disabilities less than minimum wage, a new study suggests that doing so has little downside. A new study published in the journal JAMA Health Forum, researchers looked at what happened in New Hampshire, which passed legislation in 2015 to do away with subminimum wage employment, and Maryland, which approved a phaseout of the program in 2016.

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Disability service providers across the country are struggling to maintain their services, with many reporting that they are turning away new referrals and discontinuing programs and they’re concerned that it could get worse. A recent survey finds that 90% of providers serving people with intellectual and developmental disabilities have faced moderate or severe staffing shortages in the last year. 

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Meet Rose. This photography loving self-advocate is taking the Partners in Policymaking class right now and is eager to advocate for Medicaid expansion. She’s hoping to connect with others through the Network. We’re so fortunate to have her on the Self-Determination Network!

What's your story?  Tell us a little bit about yourself.

Rose shares that she wouldn’t be surprised if she was misdiagnosed with having an intellectual disability at a younger age, but she was diagnosed with ADHD when she was 13 and Asperger’s when she was almost 15. She works at Water Performance Products in Mukwonago, but what keeps her busy is going to the gym, taking care of her pets, streaming movies and TV on Chromecast, playing computer games, and running and biking outside when it’s warmer.

How are you involved with self-determination? Why did you join the SD Network? .

Rose is currently taking the Partners in Policymaking class. She is advocating for Medicaid expansion, but knows that it’s going to be a really hard battle due to the incoming administration.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Rose was really excited to join the Network because it’s a way for her to connect with others in the disability community virtually. She tells us that sometimes interacting with people with disabilities scares her, so the network gives her the opportunity to connect virtually.

What tip or resource would you like to share with people who want to be more self-determined?

Rose encourages self-advocates to take the Partners in Policymaking class. “If people with disabilities want to make a difference for the better of all types of disabilities, then, yes, absolutely take this course,” she says.

What are some of your hobbies?

In her spare time, Rose enjoys doing photography, playing computer games, and scrapbooking.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

Going to the grocery store is not a big ordeal for most people, but for adults with disabilities and their caregivers, it can be challenging. One Wisconsin mom is on a mission to get adult changing stations in more common places. The stations can be used by a person by any age and makes it easier for caregivers to change people. The Changing Spaces Campaign aims to get these stations in more public places.

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New rules aimed to ease air travel for people with disabilities will go into effect on January 18th. The rules make it clear that all wheelchairs and mobility devices must be returned to passengers in the same condition received, and that any damage to the equipment or delay in returning it will be considered a violation of the Air Carrier Access Access. This will make it easier for the Department of Transportation to track and hold airlines responsible.

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A new survey highlighted the challenges facing America’s direct support workforce, revealing a care system in crisis due to ongoing recruitment and retention issues. The State of America’s Direct Workforce Crisis 2024 survey found that 90% of providers faced moderate to severe staffing issues in the past year, leading to 69% turning away new referrals. These challenges have negatively impacted the access to services for individuals needing care. 

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This study’s aim was to examine how states across the United States implemented self-direction in their Medicaid home and community‐based services (HCBS) 1915(c) waiver programs for people with intellectual and developmental disabilities (IDD) in fiscal year (FY) 2021. Eighty percent of states offered self-direction in their HCBS programs. Across the United States, the goal was to have 13 percent of people with IDD receiving HCBS self-direct. In FY2021, 29 percent of services could be self-directed and 36 percent of funding was projected for services eligible for self-direction. There were vast differences in how self-direction was implemented across states. For example, among the states that allowed self-direction, goals for self-direction by state ranged from 0.9 percent to 47.5 percent of people with IDD receiving HCBS. Projected spending for services eligible for self-direction varied by state from 0.1 percent to 100 percent. 

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