Upcoming Shows, SCI recovery and Medicaid 👎🏻
Hey guys! Here's a long overdue update on my recovery, my art, the various voices in my head, and lastly, the painful state of Medicaid. I'll Start with the good news! Im going to have an Exhibition at The Southampton Arts Center next fall. Yes, it's a long way off but I think that's good news considering the current state of affairs. My spring show at the Southampton Cultural Center was canceled in the spring due to covid.
My upcoming show will have limited entry as well as appointment only showings. With this in mind i decided to run a fall sale, 30% off everything on my website! Promo code fall30. check it out! Art for everyone! If it interests you, log on and help a disabled dude by buying a beautiful print.
Also if you feel like helping out but don't have space for any art, I have a donation option listed on the main menu. Any amount helps towards my goal of independence😃Alright alright, with that sales pitch aside we can move on to the other matters at hand.
I took an online course for my photography business and it forced me accomplish a few unexpected things. While trying to study I couldn't retain any information, At first I thought crap, it happened early-I'm too old to learn anything new. but then I Remember having the same thought when I was taking my captains course in Florida two years ago. I did really well. I was in Naples at the time and after the test I walked out thinking wow maybe I'm not a burnt out ol' salty fisherman after all! I think I divulged a little too much information about my time on the water and felt self conscious. The class kinda looked at me in horror as I told stories of boat collisions, explosions, fires, drugged out convicts... pretty much everything they teach you to try and prevent. But hey, who goes off to sea NOT looking for adventure. But with this success in mind I remembered that I need to rewrite information in order to retain it. Now, I thought, how can I do this with my useless noodle hands...
To use my phone I have a stylus inside of a Universal cuff. With the computer, I can use it to hit keys but it's very slow... I thought well, if I can use one hand why can't I double it! armed with two styluses I went about taking notes and it worked. Turns out Im not a brain dead, crippled ol' salt after all. C'mon though, don't we all have that voice in our head doubting everything we do, quietly serving us insults as we go about the day?!? I call him the silent doubter (silent passenger reference for you dexter fans) moving on... he's a douche.
Anyway, putting the make believe schizophrenia aside... I realized I should do the same thing with a pen. So, yesterday I ordered another U-cuff and thirty minutes later Amazon dropped it off. Now I can finally write and sign checks. It's Super awkward/uncomfortable having the person you need to write a check to fill it out as well. Also, keeping track of aids hours and general maths are much improved. It's hard as hell to count on your fingers when they don't retract from a fist.
A few other things before I get to the painful stuff. Jerome Lucani came and raised all the tables in my room to the level of my chair. It makes getting things 1000x times easier. Before I had to flop over and grab stuff. Really bad for my posture and just generally frustrating.Jean-vincent Giarratano came and extended my ramp so now I can open and close the slider. Before, every time I went outside I had to leave the door open. it would let all the hot air out. as I don't move much, I get cold easy. I don't want to let any of that coveted hot air outside. Bing Johnson Put grip tape on the ramp for the door and the van. this helps quite a bit one the ramp slippery slippery... it gets slimy and my wheels just spin, the grip tape helps.
My brother Jonathan Raynor put long loops of string on all the doors as well as the driveway gate allowing me to finally shut doors. It gets pretty frustrating having to bother someone to shut my door if I need a moment of silence. Also, I couldn't leave the driveway. That was annoying. Like really Annoying. I could get the driveway gate open but couldn't close it and the puppy would run out. So that's a big improvement. You gotta get out of the house and cruise around especially if you can't drive.
As for the Shepherd Center- I'm set to go February 21st, virus permitting. The cool kids helping me out with home care offered to go, along with our friends Celia bfinger. She's been a wonderful help, filling in when I have gaps in aid coverage. She also let my mom stay at her apartment in the city when I was in the hospital.
As for health insurance stuff- I currently have no paid coverage for my home health aids. I've been drawing on my fundraiser money to cover expenses for the month of November and hopefully Itll be set up correctly in December.
It's been a long and excruciating saga trying to get the services I need. So here it goes. Bear with me, it's confusing and long winded. Probably rife with grammatical errors. Enter if you dare.
Being disabled I have Medicaid and Social Security disability insurance or ssdi. The SSDI pays me $1000 a month to live off of. I had a Medicaid managed plan with Emblem earlier this year but changed it because their long term care plan (home care) or MLTC was pretty horrific. Pretty much everything about emblem sucked. From the useless case manager to the pathetic amount of aid coverage I was given. I waited for months to get any aid coverage at all, totally unacceptable. I also wanted to get on this waiver program. I Would qualify for it as long as I switched to straight Medicaid. It provides a few important services such as a rent subsidy and extra aid coverage. I thought with the waiver and straight Medicaid I may be able move out and be independent. The waiver people told me to ditch emblem and go for straight Medicaid.
Late September, i remembered a Lawyer mentioning that I need to have special needs trusts set up if I want straight Medicaid. Also that i need them when I get Medicare/Medicaid. You receive Medicaid /Medicare after two years of being disabled. In either instance there are strict asset and income limits. So, I called the lawyer and she didn't answer. I called three or four more lawyers and none of them got back to me. Finally someone answered and warned me of a new law going into effect October 1st. It would penalize anyone over the set asset limits who were applying for straight Medicaid or Medicare. There would be a 36 month look back for applicants. So if they had or currently have any assets, they would have to forfeit them to maintain benefits. The asset limit is really low, also you can't keep any income over $875 a month. Excess income needs to be payed back to Medicaid. I really enjoy selling photography so this would be a huge issue. Not to mention, what the F#%^ are you supposed to do with $875 a month? The lawyer told me the trusts would help pay for life's expenses while maintaining eligibility for insurance. She said she would set up the trusts, and referred me to an Medicaid "expert" to help me get the correct insurance.
The "expert" said she would help me for $3500. She needed a ton of strange/obscure documents. So I rush to send her what she wanted as the October deadline loomed. Some of it was really random, like the deed to my moms house and the Bill of sale for a truck I sold two years ago. That and a crap load of other things. It's the end September and I'm still not done. I'm freaking out. She calls me and tells me that I already have Medicaid, she doesn't need any of that stuff and switching to straight Medicaid is easy. Just call DSS. This was a bit of a shock because I told her what insurance I had, I sent her a copy of the card! But who knows, maybe there was a miscommunication somewhere.
She disappears along with the lawyer.
I called DSS and they told me to call New York State choice, New York State choice told me to call DSS. I went to DSS physically and inquire as the phone thing just wasn't working. Steven Welch got me there. He's always on board two help end get me where I need to go. They fill out the forms with me. Eventually I end up with straight Medicaid AND Medicaid with a managed care plan by Healthfirst. Somehow only the Medicaid managed care plan is active. Switching dropped my home care as well as my primary care physician.
Around this time I find another lawyer who helps me with the trusts. For $2600.
Now I have a new insurance which I don't want AND Nothing transferred. Also, I have to pay dss $175 a month because my ssdi is over the income limit. Allegedly The correct insurance is going into effect in December. Hopefully it restores my home care.
I found out about the Medicaid buy-in program which allows you to work. I guess they realized Disabled people were terrified to work because Of losing their benefits. I mean duh, I can't get out of bed on my own, Maybe one day I will but in the Meantime I definitely need home care. Anyway, with this program I wouldn't have to worry about assets or income limits. I could sell my photography and still get the benefits I need. I think I still need the trusts if I want to have a fundraiser. Say, for the shepherd center or vehicle controls etc. I just have to find out if it effects home care. The information online doesn't mention anything.
So the saga continues. I have no idea what I'm doing. Eventually I'll get to where I need to be.