Life with CP: The Healthcare Maze

Been a long while since I updated this one, but why not.

The last two years have changed my life in ways I did not expect. I have lived with cerebral palsy my whole life and was able to be very independent for many years—driving, managing my own responsibilities, and adapting as needed. But the secondary effects of CP, changes in mobility and energy, and the complexity of adult disability care have made daily life much harder.
I have spent nearly two years navigating disability benefits, providers, transportation, insurance, paperwork, and treatment options on my own. I was approved for SSDI, and my Medicare begins October 1. I am grateful for that—but SSDI, Medicare, and having some assets from my mom do not mean every disability-related need is covered.
Transportation is currently one of my largest expenses. I stopped driving last year after an unintentional accident. I have been medically cleared to drive, but I would need adaptive vehicle modifications before it would be safe for me to return to driving. I have also had to make major cutbacks, including ending private-pay physical therapy and counseling because I could not keep covering the out-of-pocket costs.
My goal is not to go back in time. It is to protect my independence, maintain mobility, access neuro physical therapy and appropriate specialists, obtain counseling, and use technology and support that can improve my quality of life.
I am also preparing for Medicare costs. Because I qualify for Medicare under age 65 due to disability, Medigap/Supplement plans in Georgia can cost much more than they do for people enrolling at 65. The least expensive Plan N I have found is $306 per month through State Farm.
I am not asking anyone to fix my life or take over my decisions. I will keep doing the research and managing my care. I am asking for help creating a bridge over the gaps—especially transportation, treatment, insurance, and disability-related expenses—while I work toward a more stable and sustainable life.
If you have donated or shared my GoFundMe before, thank you. If you cannot donate, please consider sharing it. More exposure gives more people the chance to connect with my story and help if they can.
GoFundMe:
https://gofund.me/51917b708
Why Medigap costs can be higher for people under 65 with Medicare due to disability:

Donate to Living and Medical Cost and for my Future, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my mobili… Josh Waldrop needs your support for Living and Medical Cost and for my Future

https://gofund.me/1da663956

I’m an adult with cerebral palsy, which means I will always need some level of hands‑on help to get through each day. Studies show that the lifetime cost of caring for someone with CP can be 1.6 million dollars or more when you add up medical care, equipment, and support needs over a lifetime. I chose an 800,000 dollar goal because it reflects a realistic, bare‑bones version of what it will take to keep me safe, housed, and cared for long‑term—not to live a luxury lifestyle, but simply to have the consistent care, equipment, and assistance that most people can take for granted. ”

Donate to Medical & Living Cost Bridge, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my mobility and balance h… Josh Waldrop needs your support for Medical & Living Cost Bridge

People have forgotten about me. It’s always, “I’m thinking about you, stay positive, stay strong.” That doesn’t do anything. I know you’re dealing with stuff too, but I’m running on fumes, with no energy or patience left. I don’t need more “I’m thinking about you” messages or more advice. What I actually need is real help with logistics, like rides to my appointments. It’s not suddenly going to get better, and I’m tired of doing all of this by myself. So please, no more questions or advice. If you’re thinking about me, help with the practical stuff instead.
And another thing I don’t want to hear is, “Why haven’t you applied for Social Security disability?” I have. It’s just a long, tedious process. Getting a lawyer does not guarantee approval. I’ve applied multiple times through my own work history, and I’m also applying through my mom’s record. I sent in an application for my mom’s more than a month ago, and Social Security has no record of ever receiving it. Now I have to wait six weeks for a phone interview with them. This is what I mean: I’m stuck dealing with all of this and with medication that doesn’t fully help my symptoms, and the last thing I need is more advice instead of actual help.

Here’s the latest with me having cerebral palsy is a lifelong physical disability and chronic disability. Some people who have physical disabilities do better when there’s real life support is big and they have people they can count on with me. I have people who care about me but when it comes down to the big stuff, the day-to-day stuff I’m on my own. I do all of that myself. I had a milestone today and I had no one there were thre to sharr with it was a personal milestone. Some. so I’m just gonna continue like I do every day the best way I know how.

This is true for me.

Here’s something I didn’t realize most medicines at least western medicine if we take them long enough, we build up a tolerance towards them

Here’s a hard truth tear up your head around getting on the Medicare is not the overall great thing it’s made out to be or you know people think it is yes it does allow you to go to virtually any provider in the United States. You don’t have to worry about if it’s in network anymore or not . pretty much everything is covered when you go to the hospital through part eight and part B covers about 80% of the cost, but there are still limits with it. There’s still a monthly premium there’s still a deductible. They normally take the money out of either Social Security or disability before they send you your monthly payment

 . There’s a hard cap on the number of physical therapy sessions that will cover in a year. That number is between 20 and 24 for Medicare for a lot of insurance plans through the marketplace and private insurance. It’s it could be very from 20 to maybe 30 to 40 and even then you still have to justify it to the insurance company so they would keep on paying for it.  And healthcare system in the United States was built for a short term and healing, not long-term care and maintenance.

Here someone hear something people really don’t talk about trying to get onto disability even the people who get onto it and even if they give Medicare it’s not all kind and dry personal. It’s not livable money. It’s survival money. I’ve also learned that Medicare yearly deductible monthly premiums yeah let’s see pretty much. Any doctor you want in the United States you don’t have to worry about in network anymore, but you saw that I get through and get you know orders or x-rays MRIs and other things
then part B only covers about percent of the cost where the parts or Medicare gap plan and that’s an extra that comes out on your disability too. It’s still complex.

I’m glad I’m finding out all of this stuff now while I’m still relatively young and I could still you know hard to do things to secure my future financially in other means a complex system and move slower than a snail or or turtle.

Your share helps keep me mobile and functional while I wait on disability. Thank you for spreading the word.

Donate to Josh’s Fight to Maintain Mobility and Independence, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my … Josh Waldrop needs your support for Josh’s Fight to Maintain Mobility and Independence

I’m covering some of my medical costs this week myself, including imaging, but I’m still facing $700–$1,000 in out-of-pocket expenses even with insurance due to ongoing care and therapy. These appointments are necessary and time-sensitive. Any help or shares truly make a difference. Thank you for continuing to support me.

Donate to Josh’s Fight to Maintain Mobility and Independence, organized by Josh Waldrop Hi, my name is Josh. I have cerebral palsy, and over time my … Josh Waldrop needs your support for Josh’s Fight to Maintain Mobility and Independence