I have been able to support my daughter (in her 30’s now) for the past two years of her illness by sharing my home. However, I will not always be able to. The longer this goes on with her, it worries me that I have no plan. She has no insight and will not apply for disability. How have others of you been able to support your loved one? For me, it is all out of pocket expense. What future plans do you have as a caregiver? Is there any solution you can share?
if you can afford to pay for lawyer fees and be her guardian, then you can apply for disability for her and get money deposited directly in her account. The guardianship cost in my State is about $3000.
Also, you will need to get her evaluated by a Psychiatrist and he has to give a recommendation that she is not capable of caring for herself. if your income is at poverty line, you may qualify for Free Lega Aid. Consult with Free Legal aid at your county…
Another way is to have her Conserved with the county where she is living. the county would be her public guardian and they would take care of all living expenses issues. but to get to that point, you must admit her to hospital and let the doctor should recommend her to be conserved. it is not an easy process…
I would say Consult with “NAMI” in your area. they will advise you on what the best course to take.
I agree that if you think your daughter will not be able to support herself, that you should try to get her to apply, or get guardianship so that you can apply on her behalf.
I still pay a significant amount to support my son, but the SSI money really helps. He also gets some food stamp assistance. I manage all of the the money.
I have also worked with a lawyer to set up a special needs trust fund that will allow me to leave money for my son without it impacting his benefits.
Thank you both for answering. I will look into all of these suggestions. I will look into free legal, as perhaps they can help with guardianship.
I am a bit surprised at only two responses out of 90 views. Am I the only one struggling financially to help my adult child who had to return to my “empty nest”?
I responded to this on another thread - sorry traveling- hard finding time with WiFi
I too am struggling with getting SSI for my daughter. It has now come to the administrative law judge to decide if she gets SSI on June 12. We are both sweating it out. It has taken about two years to get to this point. I need to stay home with my daughter and she cannot work and it has made finances very difficult. There seems to be so many people on the forum that have already gotten SSI, sometimes it makes me wonder what is wrong with our situation. It can be very slow and frustrating. I sure hope all goes well on the 12th. It can take up to 90 days to get paid after the judge rules in our favor, but that doesn’t even matter at this point. We just want to know the help is coming.
My son is still hospitalized in a forensic setting. I don’t know when he will be released or what programs to help him re-enter the real world will be offered. I am very worried about how I will help pay for what he needs, don’t even know if he will be able to get a job or live on his own (I think so- he is doing very well with care and treatment). I am 65 and ready to retire, at least part way. I’m going to look into the Medicaid, SSI stuff when it becomes more appropriate to do so. My ex is an attorney so he can be helpful if needed- other family members have pretty much written us off. I’m going to set up a Special Needs Trust attached to my life insurance so he will have some assets when I die. Other than that, I have no plan.
With a guardianship awarded, I immediately applied for SSI. You can also investigate if your loved one is eligible for SSDI, which has higher benefits. I think both can pay at the same time. Our SSI application is in process. Others, please comment/correct me, because I am navigating this road myself and can’t say that I understand the details. I think that when SSI is awarded, loved one is automatically eligible for Medicaid. For a younger family member, Medicaid can be secondary if family member is able to be on your employer medical plan (up through age 25 currently unless officially “disabled” prior to age 22). I think SSDI makes the person eligible for Medicare. So complicated. And then there are the cost of drugs…Unless I find one already started, I’m going to start another thread specific about how to pay for drugs, especially when on SSI/SSDI. Wondering if Trump’s initiative announced yesterday will help us with lower drug prices!!
As I understand it Medicare is a Federal program and is pretty much the same in all states. Medicaid is a state program each state administers it in its own way. SSI and SSDI are Social Security programs and are Federal. State Medicaid includes a health insurance piece. I don’t know exactly how the two interact financially except to say that they each need to be applied for individually. Your state Medicaid program is what will be the hardest to navigate because all the programs are different.
One thing you can tell your daughter is that if she signs up, she’ll be guaranteed a monthly income ( until she goes back to work, or whatever her plans are). Sometimes breaking it down for our sz loved ones makes it easier to understand.
I hope everything goes well for you on the 12th. Wow, two years to get to the point you are at in the approval process. If it takes that long to get SSI approved, I had better get moving on my daughter’s.
To everyone else who responded, I am going to sleep soon with less worry and wondering what to do, thanks to your sharing. I have some great things to look into now that I hadn’t thought of: free legal, guardianship, trusts, Medicaid, food stamps, etc.
No, you are not the only struggling.
Few of the rest of us know what to do either. This thread is really helpful.
As far as medications go, if a person with sz does not have insurance, there are some programs administered directly by the drug manufacturers. Our family member received a $1,200 per month medication directly from the drug company for six months until we could figure stuff out.
I support my 23 year old daughter on my pension and social security. She hasn’t completed high school and she has never worked. I pay for her monthly medical premium myself and it is not real coverage. I chose the cheapest premium from the exchange with the highest deductible because the premiums are too high. I set up a special needs trust in the event that she can get social security down the road. My late husband left her a small amount of money which is hindering me from applying for benefits at this time. I feel at this point that I’m doing the best that I can for her. When I’m gone it’s up to her and God’s grace but at least I tried.
There are a lot of us struggling but I find it hard to discuss it.
I do understand, and it is hard to discuss. It is terrible to think about. I needed to ask, I was terrified that I wasn’t doing enough. I so appreciate the answers, I now can makes some plans, and the knowledge from this thread has lessened my fear of failing her before I am unable or gone. I turn 62 this year, and work full time, with a part time job. When I retire, I will have no pension, I have no IRA, and little savings. Social security monthly will be about 1/3 of what I make now. The good thing is I recently paid off my home, a run down old large place. I rent 3 of 5 bedrooms to tenants, it used to be 4, but my daughter lives in one room. She never finished high school due to learning disabilities, and has barely a good work history. Now, ill, she can barely keep a job, and cannot find her own (I find part time jobs for her).
I can support her now. Later, without my pay, when I stop working, it will be way more difficult. So, I was scared as I had no plan. Now, I know how important a guardianship is, then SSI/SSDI. I perhaps can set up a trust, I never thought of that (if the house doesn’t have to be sold to pay debts when I am gone). I never thought about a will/trust/final plan, till now.
As you are doing for your daughter, I will have to do my best, and know that I tried. God bless all of us who are struggling, I hope we all find better ways.
With a guardianship, you can spend her money to benefit her until it is below $2,000 (I’m not sure if this varies by location), then apply for SSI. That’s what we were advised to do. We were even able to spend our loved one’s funds to pay the cost for an attorney to prepare/file/advise in regard to the guardianship and there were plenty of medical bills.
I have consulted an attorney and did a trust which includes a special needs trust. My daughter symptoms are not severe so I hesitate to go for guardianship presently. She had an episode that required hospitalization over a year ago. Since that time she has refused medication. I plan to wait and see if she has another episode before going forward with guardianship.
Hi vcp. You said your daughter hasn’t had an episode for quite some time, yet she is unmedicated. If you don’t mind me asking, what is life like for your daughter now, on a day to day basis?
My grandson was denied social security. Thankfully he takes Clozapine and is back to working two jobs now. It’s a miracle
Medicare is for SSDI. Medicaid rules can vary from state to state. My DIL has a chronic life shortening illness and Medicaid only covers expenses in connection with her illness. Medicare and Medicaid take the secondary payor position to an employer sponsored plan with some minor exceptions. And not all employers are required to offer coverage through age 25. There are many tweaks for smaller group policies under ACA. A disabled child they can stay on the plan if they remain your dependent. DIL was booted off parents plan at age 26.
For Medicare questions you can go to CMS.gov. They may help with some Medicaid questions too, but again there is some differences in State to State so it might be helpful to check the State’s website for Medicaid. And for questions on qualified dependents go to IRS.gov.
Sigh. It is complicated and getting more so every year. Best wishes.