Help Dax Relocate For Medical & Disability Care

Hello,

My name is Dax and I have several chronic illnesses and disorders which leave me disabled and unable to work. I spent a decade working in the non-profit sector doing both direct service work and software engineering. Unfortunately, a series of unfortunate events lead to me becoming completely disabled and requiring a months-long hospital stay in December 2019. Since then, my health has continued to deteriorate and I have lost the ability to walk or even stand for short periods. I was fortunate enough to qualify for SSDI, and with it, Medicare.

For those who do not know, Medicare only covers 80% of medical costs, and it comes with a $152/mo premium. I have to see one of my health care providers three times a week, and several of my providers more than once a month. This means that I usually have a health-care appointment every day of the week. If you are low-income, you can also have Medicaid, which covers the remaining 20% of the costs. I had Medicaid for a very long time.

Last year, due to record inflation, the SSA decided to increase Social Security recipients monthly benefits by roughly 9%, the largest cost of living adjustment in years. This cost me greatly. With this increase, I made too much in SSDI to qualify for Medicaid, SNAP, and utility assistance. I have been disenrolled from them and am now being denied my in-home aid assistance. I cannot afford to pay the 20% copays, and because I am under 65, I do not qualify for Medi-gap coverage, private insurance meant to cover this "gap," but it is only available for retirees. Further, if you are on Medicare, you cannot purchase private insurance from the marketplace (aka "Obamacare.") My only option is to pay the 20% copay or stop seeing my doctors as regularly as my conditions require.

This small increase in my SSDI has cost me roughly $3000 in benefits.

I have been trying for months now to get in touch with my county's Office of Aging and Disability. However, they have not returned my calls or emails or even handwritten letters. I only got a token response after I reached out to my state and federal elected officials and they put pressure on the County social services offices to get in touch with me. But it's been a month now since that singular phone call. I did have someone call Adult Protective Services on me, and they came and did an evaluation and said I was in critical condition, but because of my SSDI income, I do not qualify for any programs that would help me continue living independently.

I am having the rug pulled out from under me entirely, and my health has been declining and I cannot bathe myself, wash my laundry, or clean my home. The little energy I have goes into maintaining my companion animals' health and well-being because I have stopped caring about my own since no one else seems to care much about it.

Additionally, non-governmental non-profits that exist as community support organizations cannot help me unless I am on Medicaid. So not even private services will aid me despite how much I desperately need assistance.

I am asked often why I do not simply move back in with a parent or family member, but it is due to childhood abuse and neglect that I have half of the conditions that I do have. Further, I am a survivor of domestic abuse, and while I am free and have a restraining order against my former spouse, his abuse worsened many of my conditions, and I lost my life's savings paying for a lawyer to get the divorce and I have lived alone since then.

I have been doing my best to get my health in a good state. I have done experimental treatments, taken new-to-market medications, tried novel therapies, and sought out third and fourth opinions. Tomorrow I finally have an appointment with a nationally known specialist whom I have been waiting to see for almost two years now. I am so excited to possibly get an answer for one of my conditions.

After speaking with my medical care team, we determined that the best course of action for me would be to move from my county to another jurisdiction. This jurisdiction also happens to be where most of my doctors are located, and it has a much better paratransit system, better protections in housing for people with disabilities, especially for people with service animals like myself, and a much higher threshold for qualifying for government programs, so I would be able to get back on SNAP, on Medicaid/QMB, get assistance with covering costs to get accessibility items like handrails added to my home, and in-home aid services again.

I have lived in my County since 2011 and I have loved it. I love the library, the farmer's market, the art fairs, the summer music festivals... All things I can no longer attend, though, due to my disabilities. But I am unfortunately learning that the County does not love its disabled residents. As much as I want to stay and fight, I have to look out for myself first. I can't fight if I'm not alive. To stay alive, I need to move to a place that will allow me to get the medical care I need for my disabilities.

I am seeking assistance in covering the cost of moving, which I cannot do on my own because of my limited income and my limited mobility.

*Cleaners are priced this way due to the fact that without the in-home aid, my home has become very cluttered and in pretty bad shape with mold and bugs and trash. I got a quote from a "heavy duty" cleaner that she based on her own walk-through assessment. She was actually the most affordable option of the ones I contacted.

I do not know if I will be able to get my deposit back from my current place, and I am also trying to scrimp and scrounge to save up for all the application fees I know I will have to pay when looking at new apartments and whatever the deposit ends up being, so any additional funds will go toward covering those costs.

I don't want to leave my home, but if I want medical insurance, food, a roof over my head, home health-care aids, etc, I have to. The tiny COLA increase in my SSDI has lost me so many resources and my county is unwilling to even talk to me about it and my pleas to elected officials have been unable to achieve anything. I truly did try everything I could to stay here. Throughout all of this, I replied to every County official that talked to me derisively and contemptuously that I pray that they stay ignorant of the depth of the plight of people with disabilities. I truly hope they never find themselves suddenly in my position.

Thank you for taking the time to read my story.