Help Get Victor to Safety
Donation protected
My name is Victor. I’m 25 years old, I’m disabled, I’m in the most f***ed position I could be, and I need your help so I can get the housing and medical care I need.
Some background information: I have multiple medical conditions, including but not limited to a connective tissue disorder (previously diagnosed as Ehlers Danlos Syndrome, although now it’s looking like it might be something else or another type of EDS), POTS, IIH, celiac disease, hemiplegic migraines, craniocervical instability, hypopituitarism, secondary Addison’s disease, anterior retroversion in both of my hips that requires surgical correction, gastroparesis, Mast cell activation syndrome (MCAS), and me/cfs, along with autism, ADHD, depression, the works.
As a result of my conditions, I use a custom made Permobil F3, a power chair, so I can minimize pain and falls and go as far as I need to go. I also require help with some basic ADLs such as showering and tasks like cooking, cleaning, etc so I can fully commit my time and energy to actually living my life.
On top of all that, I’m currently really struggling with depression. I’m struggling with being present in my own life and taking charge of it. I’m highly traumatized from my unhealthy living situation from the last year where I had very little agency over my own life and decisions.
Two months ago, I was suddenly moved to a facility in Florida that for all intents and purposes tried to conversion therapy me out of being disabled by depriving me of my most basic accessibility needs. I desperately wanted to participate in the program and tried to slowly escalate my access needs. After being admonished repeatedly for “nitpicking” over inaccessibility and told I had to fully commit, and one day after finally getting a Disability Rights Florida advocate to visit, I was told I was being administratively discharged due to noncompliance, with 48 hours notice that I was being abandoned into complete homelessness. My noncompliance was completely due to my access needs not being met. A non-exhaustive list of my access violations is included at the bottom of this gofundme.
Since being left out on the street, I’ve been on emergency fundraising mode to stay in a hotel. I’ve had time to think about what I want to do and what direction I want my life to go in. I’ve also come up with a preliminary budget.
I’ve spent the last few years dedicating all of my time towards disability advocacy and talking all things disability, and as a result amassed a dedicated following. It’s because of them I’ve been able to survive so far, and I’ve learned that I have a viable career path—but switching gears like that and learning how to earn an income that’s at least somewhat reliable takes time.
I want to participate in another program to help tackle my depression. I want to move to south Florida for 3 months and work on my mobility with the rehab specialist I was so fortunate to meet. I have a great chance at significantly improving with specialized PT. And after that, I want to return to NYU for the fall semester after being on medical leave for 4 years and transition towards making money through content creation.
And of course, above all, I need to keep a roof over my head and get my basic medical needs taken care of.
Returning to my previous living conditions, which were unhealthy and dangerous for me, is not an option. And I am not comfortable engaging with my previous caretakers, who were willing to leave me homeless 1000 miles away from home, without having my own money.
The problem is, unexpectedly starting from scratch while being medically complicated is EXPENSIVE. Transportation costs with a power chair are ridiculous. My groceries cost more due to needing to eat a specialized diet. My meds are just…so expensive. Oh my gd. I need help from a health home aide. Wherever I live has to be accessible, which likely means a new build, which is more expensive. Basically, every facet of my life is far more expensive due to my disabilities.
Here is the budget breakdown:
- Aide help of at least 15 hours a week for showering, cooking, cleaning — optimistically, $1000 a month
- Waiting at a hotel for possibly up to another week before transferring to another program — $1500
- Copays for medications — $120 a month
- Medications bought over the counter — $100 a month
- Compounded medications — $100 a month
- Supplements for my severe vitamin deficiencies — $100 a month
- Non custom power chair that can be taken apart so I can take much cheaper car rides and uber rides — $3000
- Basic transport chair — $200
- Groceries — $400 a month
- Phone plan — $50 a month
- Transportation, including up to 3 flights, and possibly multiple rides with my power chair that cost AT LEAST $150 one way, maybe even potentially heading back north to get my license and grab my family’s WAV and drive it down — $3000. optimistically.
- Prescription prism sunglasses so I can actually go out during the day and see — $300
- Rent — $2000 a month, plus deposit of $2000
- Replacement mask and filters — $200
- Clothes since I don’t have many possessions on me and my weight has fluctuated significantly — $500
- Kate Farms for my gastroparesis and nutritional needs, two shipments a month — $150
- Moving costs and miscellaneous — $3000
This comes out to about $30,000 total. Ouch. Not even including the cost of PT or extra unexpected medical costs, like if I need to go to the ER or take an ambulance ride.
As I’m writing this I’m on my last 60ish dollars.
Please help me keep a roof over my head, take care of my basic needs, cover my medical care, improve my mental health and my mobility, get back to school, and take back control of my life.
Every dollar helps.
Thank you,
Victor
Venmo: @Victor-Markhoff
Cashapp: $victormarkhoff
Paypal:
Patreon: aprednisonehateaccount
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Addendum —
Here is a very short, non exhaustive list of some of the mistreatment I faced at the facility I was in:
- Withheld pain management from me to the point that I could not get out of bed for 12+ hours at a time and therefore not use the bathroom. As a result I developed a UTI, which turned into the beginning of a kidney infection.
- Withheld my electronics from me as a reasonable accommodation for me when I am autistic and only partially verbal, leaving me unable to communicate entirely at times.
- Withheld my electronics when I was nonverbal and they had to call EMS for said kidney infection so I could not communicate my symptoms to medical staff. They lied directly to me that the ER had some kind of tablet that I could use to communicate (they literally said “we’re 100% sure”), and then of course when the ER couldn’t accommodate me they STILL refused to send over my electronics so I could communicate.
- When they contacted the ER to warn them of my transport, they didn’t explain my fairly specific symptoms indicating a kidney infection, rather chalking my visit up to “general malaise,” but they made a POINT to say I only became nonverbal 5 minutes before EMS arrived, like I was throwing a tantrum.
- Without proper pain management, I am also unable to write, and they refused me the reasonable accommodation of having my electronics on me in order to do things like journal, keep lists, or take notes.
- Clinical instructed staff not to help me with my ADLs, despite the fact that I can’t do them all, and therefore leaving me for days and days at a time without showering.
- Refused to provide accessible transportation allowing for transit with my personal wheelchair, requiring that I pay an extra $260 PER TRIP if I wanted the luxury of using the wheelchair custom designed for my needs, for rides they otherwise would provide for free for any other clients
- Excluded me from community activities due to lack of accessible transit, then cited said lack of participation in community activities as “noncompliance”
- Made it extremely painful and energy draining for me to go to my medically necessary PT every day due to lack of accessible transit, first citing me as noncompliant when I refused to go until I got accessible transit, thus forcing me to endure this incredible pain daily, then citing me as “noncompliant” when I struggled to make all of my groups due to collapsing from exhaustion and pain from going to PT with inaccessible transit that forced me to leave my wheelchair behind.
- Claimed my chair was “not medically necessary” and wanted me to only use a hospital chair, despite me being unable to push myself and hospital chairs absolutely not being designed for every day use; they are notoriously difficult for even people with strong upper bodies to use. (this is also a reminder that a permobil F3, the wheelchair model I use, is notoriously hard for insurance to cover and I had to withstand multiple evaluations and have a significant medical history in order to receive mine).
- Planned to move me to housing that was inaccessible, would only allow for hospital chair use, would have me with no help whatsoever (despite APS recently evaluating me and stating I need 56 hours of care a week), and required (inaccessible) car rides at least 4 times a day, if not more.
- One clinical member overseeing my care, who made the decision to discharge me, yelled at me that he knows more than me about the ADA (Americans with Disabilities Act) when I tried to bring up how I was being treated and said my concerns about being locked out of activities due to inaccessibility were “irrelevant” since it’s not “medically necessary.”
- Promised not to discuss my noncompliance before I could get ahold of help from Disability Rights Florida, and then held an intervention anyway, and then decided to administratively discharge me the day after Disability Rights Florida came by, not even allowing for one meeting discussing the egregious violations of my rights.
- I was not given the handbook containing the numbers for the corporate compliance line, Adult Protective Services, the Agency for Health Care Administration, and Disability Rights Florida until 14 days in, when I should’ve been given them immediately.
- Despite me repeatedly stating I only wanted releases to my family that required me to be in the room or required talking to me beforehand, TWICE without my knowledge setting those releases to full consent.
- Several times I was denied the opportunity to call Disability Rights Florida despite it being explicitly against their handbook to deny that right.
- At least 10 staff members on all levels of care have objected to my care, including my nurse who was fuming that I was going multiple days without showers due to clinical’s decisions. At least one has opened an investigation with the corporate compliance line into my treatment as a disabled patient, and as far as I know that investigation is still ongoing—and yet they still discharged me for noncompliance due to inaccessibility.
- Withheld my own medical records from me despite multiple requests, then found out once I accessed them through other means I’d been lied to several times. Most devastatingly, I found out the outside rehabilitation specialist suspected vascular ehlers danlos syndrome (a life limiting condition) during my evaluation, and the doctor here simply told me I didn’t have EDS and did not mention any necessary follow up.
- As a cherry on top, would not help me contact my wheelchair company to repair my chair after it was damaged on the plane ride here, in the entire month I was at the facility.
- Actually, the cherry on top is that the grievance forms, which I only found a few days before discharge, must be written. And I can’t write without accommodations.
Organizer
Victor Markhoff
Organizer
Boynton Beach, FL