I am 61 years old and on disability. I receive $1,043 a month. My mom, who passed in 2012, left me some money in a trust. The trust has been paying my rent, utilities, prescriptions, and some medical bills as well as giving me a monthly allowance. I was recently told by my trust advisor that it will run out by 2028/2029. Obviously, my disability check is not enough to cover these expenses and my other bills once my trust runs out. I would like to move into an assisted living facility because due to my multiple mental and physical health problems, I can no longer take care of myself. However, I have no savings, no retirement money, nothing! I am on Medicare, but it does not cover assisted living. I heard that if I have both Medicare and Medicaid that most of the cost of the ASF will be covered. The problem is that I was told that between the trust money and my disability money, I get too much money to qualify for Medicaid. I will be eligible for Medicaid once my trust runs out and I’m only receiving the disability. Unfortunately, that will be too late, and I will be homeless! I have absolutely no friends or family (literally), so there is no one to take me in. The alternative to me becoming homeless is not something I am going to state here. Suffice it to say that I will not survive if I become homeless! I don’t know what to do, who to talk to or where to go! Please help me!
Or…
Are you on SSDI? So in the past you were working and then something happened and you became disabled and that $1043 is based on your work history?
Both of these allow for you to be paid monthly income and to be on MediCARE. But they differ big time in how income is looked at and with restrictions on how income is spent.
AND
you mentioned getting $ from the Trust. Is it reported income? Or is it that the Trust does a distribution to you for you to have for basically personal spending $ each month. Trust directly pays for all other bills? How the Trust is structured for how it got set up and now doing all this money management is going to be quite important for as it will be a factor as to if you can be eligible for any “at-need” programs.
So what is that $1043 based on? & is there a deduction from it for any type of health insurance costs? Like a Part B premium for Medicare.
When did you qualify for Medicare?
Was it at all based on your having a specific disease?
Or was being on Medicare based on being on SSI? or SSDI?
How you were able to be eligible for Medicare before age 65 is important as it will tie into what kind of Medicaid waiver program you may be able to get if you can also be show to be at-need financially. It will be waiver programs that pay for residential custodial care costs in AL and they are done through your State Medicaid system. Waiver programs end up with the applicant being on Medicare + Medicaid for health Insurance OR purely only Medicaid for health insurance if not eligible for Medicare PLUS a Medicaid waiver to cover the room and board costs at a facility. Waiver programs will have a Share of Cost requirement. What that means is if you are paid income from the Social Security Administration or any other fixed income resource, that income will have almost all of it paid to the facility as your Share of Cost.
Right now what is your gap / secondary health insurance coverage? Is there a premium? How is the premium paid?
You will have to sit with whomever is the administrator &/or Trustee of that Trust your mom set up for you to discuss the status of the Trust, what the Trust was set up as and what it is allowed to pay for (this factors in for if Medicaid allows for you to have this type of Trust) and how to best do a planned defunding. They are being paid a fee from the Trust, they should be responsive to your requests to meet with them and go over your concerns. But imo you want to have some idea of where you could move into for October (Assisted Living or maybe a Board and Care home) so you do some research as to the costs for AL or B&C or other congregate type of living situation. A social worker should be able to help you find a facilty. Maybe contact your Area (Council) on Aging to find one OR is yiur disability is related to a disease then contact the advocate gfoul for your disease. (Like for leukemia itwould be the local/regional Leukemia and Lymphoma Association as they have chapters nationwide). Imo you want to have somewhat of a plan as to how you’d be able to use the $ in the Trust to pay for all, till it defunds completely; and then you segueway from private pay to being on a Medicaid waiver.
There are a couple of posters on this forum who have dealt with Special Needs Trust for younger family members who are not yet at the magic age 65 when so many social safety net programs have set for eligibility.
If the trust advisor is a bank or investment house they have an incentive not to release the monies as they want to keep charging fees.
Almost all trusts have a clause where you can access the money for medical needs/housing needs. i.e.
I'd run this by some professionals to make sure but you should be able to pay for the assisted living with cash from the trust until the trust runs out and then go on medicaid for payment for the assisted living.
Most if not all assisted living facilities will take Medicaid after someone has been self paying for a while.
And there are some assisted living facilities (here in NC anyway) that will take Medicaid right off the bat.
I would talk to a good elder law attorney to get this figured out.
Reading your post, I can see how frightened you are, and there is no reason AT ALL that any of our American Citizens should fear growing old in peace.
Please consult a local Ombudsman for assistance. I have provided the information at the bottom of my response to you. Don't be afraid to pick up the phone and start asking questions. There are people to help navigate these confusing decisions that you are making for yourself.
As the law explains:
The Affordable Care Act of 2010 created the opportunity for states to expand Medicaid to cover nearly all low-income Americans under age 65. Eligibility for children was extended to at least 133% of the federal poverty level (FPL) in every state (most states cover children to higher income levels), and states were given the option to extend eligibility to adults with income at or below 133% of the FPL. Most states have chosen to expand coverage to adults, and those that have not yet expanded may choose to do so at any time. See if your state has expanded Medicaid coverage to low-income adults.
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Best Wishes, Marla.
How to Reach:
Contact a local district office or the state headquarters at 850-414-2323 or toll-free 1-888-831-0404, according to ombudsman.elderaffairs.org.