I read this. Great link. Thanks. We have set up a third party snt that takes affect when my wife or I die last.
I am not sure how I am going to handle this. I believe for us, the government benefits are less than the increased tax costs of a trust. At least for the first 30 years or so. The highest tax brackets start at $11,000 or $12,000 in a trust. This may not be an issue if my wife or I are alive for 30 years. Munis are tax free in trusts. May be another way to go depending on market decisions.
Then I have to figure out how medicare is going to work for my daughter.
There are other issues. I have a meeting in October with the government regional center that helps my daughter. I think that is fine unless both my wife and I die before then.
You can buy a house for a beneficiary in a trust, but then you can’t pay the property tax without hurting your government benefits.
Thanks for the info, @dstark. I will pass it all along. My friend’s son has only ever lived with his parents. So, I am guessing they already have had to deal with benefit reduction issues for years. They have elected to do what is best for them.
My friend and her H never travel together for fear of a common disaster that would leave their S uncared for. But with advancing age, she wants to make sure to eliminate / reduce legal uncertainties. Financial uncertainties complicate matters even further.
My son has been in the group home for four weeks now. He likes it there, whew! He came home over Easter weekend, but it was hard for him - too much stimulation, I think.
I have my first speaking engagement for NAMI (National Alliance on Mental Illness) next Tuesday. I will be speaking to the non-profit that runs my son’s home and quite a few others in our area! I am excited about it. They specifically said they want to get a family member’s perspective, as well as ideas for the staff and their interaction with us. I am excited but nervous. I am the introvert that usually is pretty quiet!
I’m sure you will be great!, You have offered so much insight and experience here and are so well-spoken (at least online). We all value your knowledge and experience.
The speaking engagement went well. I got to talk to the director of my son’s home, and also his new case manager. The group was appreciative and said it helped to hear the perspectives of family members.
Today I met with the director of Community Housing of Maine - they operate more than 60 properties around the state. They house mentally ill, veterans, homeless, etc. I told the man I would like to help in some way, and he said it would be great if I could visit some veterans regularly, because nobody ever goes to see them. So sad!
If anyone is looking for ways to help in their community, this is a great avenue, supporting people who usually get no help at all.
Then this afternoon, a staff member at my son’s house called and said he was behaving oddly. I told her that if he continues AT ALL, they should call for help, because his pattern is to decompensate quickly. Sigh. It’s nice to know that someone else is responsible for him, but it still feels weird that it’s not me looking out for him.
My S is taking the ACT this morning. I do not have any expectations for it, other than he will do it. I really don’t know what kind of score he will get. He definitely is not 2E and has a 2.2 GPA. So, I am guessing the score will be lowish though still acceptable for some colleges.
We also received two letters yesterday. One from the social security administration stating that S’s claim for disability had been denied. The other was a letter from our lawyer stating that they knew about the denial and would be appealing within the 60 day timeframe. I was a bit disappointed, even though I expected the denial. Does anyone know if having a part time job would have hurt his chances?
thanks, dstark. S does work at a grocery store and has been there for just over 4 months. They have not trained him on the cash register. Most teens that work there will get promoted to cashier at about the 3 month point. I don’t know if that means they don’t need cashiers right now or if that means they don’t want him cashiering. So, S is still bagging groceries and bringing in carts along with all of the brand new hires.
I knew about the lowering of benefits as a disabled person works and earned income. I don’t mind that. I want the disability there in case he can never work enough to sufficiently support himself. At least it would get him insurance and some income, along with maybe some other supports.
The lawyer does specialize in disability cases. It is all they do (I think.). They only get paid if we win. So, I am guessing they think there is a good chance of winning eventually.
We had a meeting with the Vocational Rehab people this past Monday. It sounds promising that they will accept S into their program. They do have to follow their procedures and we have to wait on a formal letter that will come this summer. She said off the record that by talking with us and looking at his app that he is the perfect person for them. They will help him with job coaching, interview skills, resume writing, bus passes if he does not have a driver’s license or car to get to work, possibly a grant to the local CC to pay for job training tuition (or books/fees if he gets enough need based aid to cover tuition).
S also took the ACT about 10 days ago and I saw his score yesterday. I have not shown it to him yet, I am trying to process it. He received a 17. That is about where I was expecting, but I was hoping for a 20. He has not had chemistry or algebra 2 and that hurt him. They put him in consumer math after he got D’s in geometry and so he is taking an environmental science as his junior science. He has not had any foreign language.
We need to decide what his post high school options are. And, I want him to have choices relevant to him. I guess he does have two choices. He can not go to college and continue working at the grocery store. If he is approved for disability, then the 18 or so hours a week he currently gets there would be just about right. (He may lose some of the financial benefits from disability but not all of them and he’d retain medical insurance). Or, he could go to the community college. There are two small LAC’s here in our state that may accept him provisionally. They say they require a 20 ACT but will accept a 17 with a 2.0 GPA. He does have just over that now. Hopefully it does not go below that after spring finals.
Update on my son - the home was concerned enough about him that they hoped he would see his old doctor again. This is the doctor I love - he doesn’t charge my son to see him since he doesn’t take Medicaid in his private practice. He also came to our house when our son decompensated in February while we were gone. So my husband took DS out for dinner and told him we’d like him to see this man again. To DH’s surprise, DS said he would like that, because the new person, a nurse practitioner, seemed inexperienced and overwhelmed. I took DS to see the doctor this past Friday. The doctor put him on lithium again, and that seems to be helping a lot.
My son’s home is about 45 minutes away from us and the doctor, so his case manager can’t drive him that far. That means that every two weeks, I will have to make two round trips to get DS to the doctor - three hours of driving! But I figure it will give me an excuse to catch up with him.
So I thought I wouldn’t have much responsibility for DS anymore, but it looks like I will. I think it’s a good thing. I still find myself kind of down most of the time. I may need to get on an anti-depressant.
@mainelonghorn will your s being seeing this doctor every two weeks forever? Is there a chance it could move to monthly after the medication dosages are leveled out?
@bajamm, we certainly hope so! But he has a pattern of spiraling downward VERY quickly, so he needs eyes on him regularly at this point. The alternating weeks, he will see his therapist.
Following along with interest. I did a NAMI walk with my sorority last weekend and we raised more than $1000.00. Hope that helps. MaineLonghorn, it sounds like you consider therapy as helpful as you are meds, presumably for you as well as your son. Kudos.
Cool, @shrinkrap! I am so impressed with NAMI. I have joined their Speakers’ Bureau in Maine. In fact, I spoke today, to a group of employees of the organization that runs my son’s home (coincidentally!). Now I am going to start planning an event at our church hosted by NAMI. I am an introvert by nature, but when it comes to mental health, I think I HAVE to speak out.
Our D has a chronic medical condition that has greatly limited her stamina and ability to plan much in advance because she never knows I how long physically she can be upright and out of bed. She did manage to get her cinema college degree after 3 semesters of CC and 4.5 years at college. She struggles to remain awake for up to 12 hours and at her worse sleeps 20+ hours/ day.
We have never applied for disability, as we are concerned about labeling and stigmatizing her. Would appreciate suggestions as to how we should move forward. She is turning 26 soon and aging out of H’s family plan. Should we apply for disability to allow her to remain on H’s family plan?
She hasn’t held a job other than a part time position she held on campus while attending school until their funding for the position ended.
I left messages for two insurance agents to call us back. She lives in LA and sees a specialist there. All her other medical providers are in HI.
On the positive side, her brother who has a similar condition was able to graduate with BEE and has been working full time for 4 years now. We and her specialist are cautiously optimistic.
I can fully understand the wait and see approach in your D’s case. This is also common in the ASD community, since diagnosis does not directly predict outcome.
Are you talking about first applying for SSI and then for post-26 coverage? Or applying only for continuation on your H’s plan? I imagine that this can get complicated and would suggest that you contact a disabilities attorney for direction on how to proceed if you feel you are running out of time (D’s 26th birthday fast approaching) , or if you you are worried your initial request will be turned down, especially since there is no history of receiving Medical Assistance.
Our non-verbal S qualifies for SSI, Medical Assistance and a waiver that pays his living expenses.He began receiving Medical Assistance while still in school, and applied for SSI when he aged out of school at 21. Shortly afterwards, he also received the waiver that allows for group home funding.
He nonetheless continues to receive extra coverage through H’s plan even though he has turned 26. It is our understanding that this will need to be renewed each year,even though there is just about no chance that he will ever no longer qualify for benefits. For his other benefits, we also go through a yearly audit of his needs. We indicated a sibling to contact so he can also get survivor benefits if/when the time comes, and will be funding a special needs trust that will pay for medical benefits above what is covered by Medical Assistance and supplementary insurance.
The types of questions we answered on the forms seem to indicate that a wide range of dependents receives these types of benefits. The forms we fill out ask for a detailed accounting of all medical specialists and medications, hospital visits within the previous year,as well as his living and work history. (He is in a group home and is not employed; he did work in a sheltered workshop situation a few hours a week when he was still in school for less than minimum wage, and we needed to provide documentation for this.)
They asked what kind of funding he was receiving, whether he had a guardian, and whether he qualified for SSI. We had to contact his internist to fill out forms to certify his level of disability. There was no indication that qualification for SSI (and limits on the assets that can he held in his name) was necessary in order to qualify for this type of insurance coverage - this is what you would need to find out.
OK. Thanks so much. This is tough because D LOOKS great and did get her college degree. She is obviously bright and can talk with great insights. We have never pursued disability because we keep our cautious optimism that she will get better an stabilize so she WILL be able to hold a job.
Just spoke with insurance carrier. I was told that I have to have H call Office of Personnel Management, as H is a retired federal employee. They gave me the toll-free and other phone number. We have to explain the situation and ask what kind of proof they need and where they need it faxed and whom to call back to be sure it was received and when a decision can be made about whether or not she will be allowed to remain on H’s policy as disabled past her 26th birthday, even though we have never filed for SS or Medicare disability. She said be prepared to wait and call repeatedly, up to 8 times and be talking or on hold for up to 90 minutes. The local insurance agent was trying to help a member correct a birthdate because the member had so much trouble and it took the agent 8 callsl and a 90 minutes phone call, faxes and more!
Fortunately, the agent was sympathetic because she has sleep apnea and says she’s always feeling tired. I explained that D has had chronic mono for 15 years now, with no end in sight.
I told her that if he continues AT ALL, they should call for help, because his pattern is to decompensate quickly. Sigh. It’s nice to know that someone else is responsible for him, but it still feels weird that it’s not me looking out for him.