My son is on Medicaid. It’s been a lifesaver. It paid for my son’s 28-day hospital stay in 2015. Our part would have been about $10,000 if he’d been on our insurance.
Ohio seems to have beat Nebraska :
www.STABLEaccount.com
Studying their 60ish page disclosure, it’s still clear as mud to me how/if distributions affect SSI or MEDICAID for housing, which is what our family is interested in…maybe my brain will be fresher in the morning!
Maybe I’ll be brave and visit my local SSA office, that’s sounds like fun.
Decided I couldn’t hazard a visit to the SSA office but found this from the SSA website:
https://secure.ssa.gov/apps10/poms.nsf/lnx/0501130740
Seems like distributions from ABLE accounts for housing will not be counted as resources against the beneficiary’s SSI eligibility IF IT IS SPENT IN THE SAME MONTH AS THE DISTRIBUTION IS TAKEN.
So, withdraw $$$ to pay for rent on May 30 and pay on June 1 and SSA considers that amount as a resource.
But withdraw it on June 1 and pay rent to your landlord on June 2 and the withdrawal is NOT considered as a resource in determining SSI eligibility.
Seems really silly and designed to catch you making mistakes. I’ll see what our lawyers take on this is next week.
We think we’ve ironed out the funding issues in our family’s situation and are moving forward later this month for our daughter to move out of our home for the first time and her new shared house across town.
She (and I) are excited and apprehensive all at the same time it seems. Sooooo many details to address to make the transition safe…and then there will be hundreds of minor inconveniences I’m sure.
Every single family I’ve spoken with who has helped their disabled young adult transition into their own home has promised me that it will be rocky but so worth it. That they are amazed at the growth in their loved one. That it was absolutely the right move.
I’m hoping we find the same!
Wish us luck!
@musicmom - Wishing you and your D a good transition.
Now that H and I are older and beginning to slow down and need to spend lots of time getting to doctor’s appointments, it is extremely helpful that our S is in a group home.
@frazzled2thecore - thanks. That’s the flip side of the coin. We really do believe it’s best for our D to be living with peers in the most independent situation that she is capable of.
But her father’s recent serious illness highlighted that we need also to be able to focus more on ourselves.
Still relatively “young”, but not getting any younger!
Do you have any words of wisdom to share? What worked for your son and your family? What didn’t?
I know each situation is so different but if you care to share, I’m all ears!
No words of wisdom. Our S was actually thrilled to be in his house, so far as we could tell. But, he spent the last couple of years of his schooling at a residential school, in a dormitory setting with a room mate. The house was a step up for him.
When he first moved into his school, he was beside himself with grief, and I came back to visit every day for the next week or so, even though it was a couple of weeks before I brought him home for the week-end. He gradually adjusted. I think it was better this way than in the old days, when they advised parents to drop their kids off and not come back for a month.
He is in a routine where he comes home for overnight visits a couple of times a month, and while he is happy to come home with us, he also looks forward to returning to his place. We keep his room as it has always been, and he becomes uneasy if I rearrange anything between visits.
Other families bring their children home less frequently but for longer periods. This is not practical for us, since our S really requires 24/7 supervision. When he is home, H and I sleep in shifts. Even so, we are worn out by the time we take him back. His siblings (both are single) see him a couple of times a year. Since his grandparents passed, he has not seen any other relatives and would not recognize them anyway, and other clients with his agency have become his extended family.
He goes to medical/dental appointments with staff from his agency although our insurance still supplements what he gets from Medicaid. The agency will call us if there is a serious problem or he has a seizure. Money in a special needs trust is earmarked for restorative dentistry in particular.
I expect the next transition in his life will come if we sell the house and downsize, or when we enter our final declines.
Staff at the agency that manages his house have told us that when we are no longer able to bring him home for visits, they will bring him to see us. Before then, we might try to get into a routine where we visit him at his house and perhaps take him out, but do not always bring him home for visits.
Of course, we have learned over the years never to become too complacent about ourselves or any of our children. Situations can change in a heartbeat.
I think those ARE very much words of wisdom. Thank you. It is so useful to hear specifics from family’s who have already been there. Sometimes I still feel alone in this.
I want to see the future for our D and know that all will be well for her and of course, that’s impossible.
My husband and I educate ourselves, attend every special needs parent group meeting we can find, consult attorneys, set up trusts and wills and and and… there is no guarantee.
Just like there’s no assurance that our “typical” son will have a secure, happy life.
But a mother can hope, right? 
Our D has a job in a vocational workshop, attends some self directed programs using paratransit buses, and can navigate on foot safely around our small town she has known since birth. But I’m still wondering just what she’ll eat for dinner, whether she’ll remember to charge her phone that has an alarm to wake her for her bus and about 4000 other things that can and will go wrong.
Most I hope will be small issues; she will have support staff but not 24/7. And we live just across town…So I’ll surely be a helicopter mom.
Her dad is worrying too, just more quietly than I!
@musicmom, you’re certainly not alone! We are in the same boat. Our son is thriving in his apartment. When he was home on a visit last week, he said, “Mom, I want to tell you that I’m really happy the way my life has turned out. Everything I went through taught me some important lessons.” He went on in that vein. Of course, it choked me up that he’s happy living on Social Security and NOT working, but I’m glad he’s doing well. He’s actually talking about different things he might try to do for work, too.
I guess I will always have a small ache in my heart, since this is the kid I thought would cure cancer. But I know God has a plan for him, and it will be exciting to see what happens.
Our child with chronic health issues is also a pretty content young adult. She’s flown to be with me here in Denver, where I will be having 4 days of testing and evaluation so she can be extra eyes and ears, and help in whatever way she can in my future care and treatment.
Her life isn’t what she or we had hoped or imagined, but we are glad that she is content and doing what she can to optimize her health while waiting to see what improvements she can get from treatments.
It feels good when our loved ones are content and “in a good place,” even if it isn’t where any of us had hoped.
Well, the lease is signed, DD and I started packing up her room for the big move to her new place next week.
What a mosaic this kid is…one moment she’s asking if she can bring along her American Doll she hasn’t touched in 10 years and in the next she asking if her other roommates have ID s so they can all order drinks when they go out together.
This will be a trip.
I am back on after bit of a hiatus. I thought I’d stop in here before I log back out again. Know that I read this thread at least weekly, even when I am not active.
My son did graduate from high school in May, just barely. He got a 62 in photography because the teacher said S lifted a picture from the internet… not true, I was with him when he took it. S refused to advocate for himself and almost shut down and do nothing. Between his special ed teacher and me we got him to do enough to pass the class and get the credit so he could graduate. (he needed a 60, so the 62 was just barely enough).
He is signed up for fall classes at the local CC. He plans to work towards an AAS in Criminal Justice. I don’t think he could handle the academics of an AA degree, even the more lenient AAS may be too much, though it is worth a try.
Do you remember a year or so ago when I was worried that S may not pass drivers ed? Well, he did pass and drove fairly well until April, when he got a fairly big speeding ticket. He was still underage and in his first year of having a license so he had a hefty fine to pay and lost his license for two months. They gave him a month to pay the fine, which we did on the last possible day. Then they gave him a month from paying the fine before he had to turn in his license. He can go back on August 19 to get it back, less than a week before the CC classes start.
We will also have a disability hearing with a judge at some point this fall to determine if he is disabled. I hope that goes through so that we can look into other housing options for him. Right now, with him not working and with no income, we can not afford to pay for other housing for him. He will just need to stay in our 2nd bedroom. I am not sure that will be healthy for any of us once he hits his early 20’s.
Kiplinger’s Personal Finance Sept issue has an article “Making a Plan for a Special-Needs Child” - gives info on estate planning and ABLE account info.
Hello all - I am wondering if it is appropriate for me to post here. It seems like most of you have children with intellectual disabilities and some may be quite severe. My situation is a D who has Borderline Personality Disorder along with anxiety and depression and misophonia. Although IMHO it is difficult to tell what is primary and what is secondary.
In reading the thread it is comforting (if that sounds appropriate) to see other parents struggling with a different path for their child than they envisioned. I just thought it would be good to “visit” here with people who may understand more. My child may appear to be typical if you meet her in person, but she is not able at this time to go to college and she hasn’t really been able to hold a part time job. My DH and I trade off working at home most days so someone is around in case she has a meltdown or needs other assistance.
While there are many days that she is good and happy, I find that we cannot predict them and therefore it is very stressful to try to plan anything in advance as we never know if she will be okay to be on her own. I have been able to reconcile the fact that she won’t have the typical life we had assumed and I’m okay with that. I just have a lot of trouble imagining what her future will be like - I feel like we are driving without a roadmap and that is very stressful for me.
Hi Surfcity, My situation with DD is similar to yours. She participated in DBT training last year and found it helpful. DBT DBT has been documented to help people with BPD self- regulate. In terms of future planning, it is hard. DD has been in a residential program for young adults with mild spectrum disorders for the past 5 weeks, and so far, so good. They suggested she have her own living space instead of a roommate, and I think that is helpful. There is a lot of psychological support provided. PM me if you want more info. Believe me, I understand the chronic stress and worry.
I have two kids. Both were diagnosed with Chronic Fatigue Syndrome and other conditions over a decade ago. We are grateful that while they really struggled in HS with the schedule (being in class at 7:45am was VERY tough and they had frequent and prolonged absences), they both both got college degrees.
S has gotten an excellent job and lives a great, independent life. D, on the other hand, has never been able to hold a full time job to date, as she can’t predict when she will be able to be vertical and out of bed from day to day. It is really hard for us to plan. So far, we have been able to continue paying all of her expenses, including housing.
A BIG accomplishment was getting her declared a disabled dependent so she can remain on our family medical insurance plan until she married or her status changes.
I guess we will try to leave enough of an inheritance so she can continue to live independently, even if she’s unable to support herself or hold a job. We are just grateful that S seems to be mostly able to function very well. Thankfully, they can both think very well and have good friendships.
My DS is in a similar situation, Surfcity. He is really smart and we always thought he’d go on to do whatever he wanted. At 24 he is at home, taking some courses on line and daily life can be a huge struggle for him. He does not drive. There are times when he is ok alone in the house and others when one of us needs to be home with him. We have not traveled as a family in years; my husband and I take turns going out of state to visit relatives as needed. There is no travel as “wanted” right now.
I try not to complain. I try to stay busy with what I enjoy just as my husband stays busy with what he enjoys; we just make sure to coordinate calendars. It’s hard to reconcile the hope you had for your child with the reality of illness that robs him of so much. And us too.
Himom - very interested in the disabled dependent as we will face the insurance issue shortly. Will definitely look into this.
Hugs to every family on this thread.
@Surfcity, my son is 24 and has schizoaffective disorder (schizophrenia plus symptoms of bipolar disorder). I have some thoughts for you:
- Get in contact with your state chapter of NAMI (National Alliance on Mental Illness). They are an outstanding resource. They offer a 12-week course called "Family to Family." It is free and led by a trained volunteer who has a loved one with a diagnosis. Here is a description of the program:
<<<The group setting of NAMI Family-to-Family provides mutual support and shared positive impact—you can experience compassion and reinforcement from people who understand your situation. You can also help others through your own experience. In the program, you’ll learn about:
How to manage crises, solve problems and communicate effectively
Taking care of yourself and managing your stress
Developing the confidence and stamina to provide support with compassion
Finding and using local supports and services
Up-to-date information on mental health conditions and how they affect the brain
Current treatments, including evidence-based therapies, medications and side effects
The impact of mental illness on the entire family>>>
The word that I’ve heard most often to describe this course is “lifesaving.” I can’t recommend it highly enough. Just hearing the experiences of the fellow class members is invaluable.
- It sounds like your daughter might qualify for SSI or SSDI. Have you looked into that? In our state, if you qualify for Social Security, you are eligible for Medicaid, also. We did all this for our son. It took a little while, but wow, is it worth it! It means our son has been assigned a case manager - what a concept! A lot of the load that I was taking on is now carried by a professional!!
- To go along with disability benefits, housing is another possibility. My son was in a group home for a year. At first, I thought, "No way in hell I'll put my son in a group home!" But then I toured it and was really impressed. There were a total of four people living in a big house. The onsite staff cooked the meals and organized chores for the residents to do. Each resident was assigned a staff member who assessed him or her and was responsible for making sure everything was going OK. My son lived there for a year, and then was transitioned to an apartment he shares with another diagnosed person. He is responsible for himself, but there are staff in the upstairs office 24/7. They administer meds. Gradually, they are giving my son more responsibility for taking his own meds. Right now, he's on Tier 4, which means they trust him with three days worth of meds. He loves the freedom but also takes comfort (his word) in knowing that there is help available if he needs it.
My son lived with us from September 2011 through March 2015. We went on a couple of vacations during this time and each time there was a crisis. I can’t tell you how important it’s been for our son to live away from us. We feel like we have a life again.
If you have any questions, feel fee to ask!
One other thought, for EVERYONE with a mentally ill child: If there are "well’ siblings in the family, there is a HIGH likelihood they are struggling. If you’re not aware of it, it’s because they are trying to be the “normal” ones in the family, for a couple of reasons: 1. They don’t want to be a burden to you, and/or 2. They’ve seen what happened when their ill sibling when they got help, and think, “I don’t want to gain weight from meds! I don’t want my parents to yell at me! I don’t want my friends to think I’m weird!” etc.
I say this from personal experience. I always called my son’s younger sister, “Sunshine.” She was 12 when her brother was first diagnosed. She never showed any outward signs of struggling. She kept smiling, studying jazz piano, taking photographs, hanging out with friends, and doing well in school. Inwardly, though, she felt horrible. She speaks for NAMI and part of her talk is that she got to the point that she really didn’t care if she woke up each morning or not. 
I had done the “right” things such as asking her if she were OK, and if she wanted to talk to a counselor. But she insisted she was fine. It wasn’t until her Girl Scout leader called and said she thought D was struggling that we didn’t give her a choice and sent her to a counselor. She and I just gave a presentation in Austin, and afterwards, two people came up to us and thanked her, because she made them realize they need to pay more attention to siblings.
OK, I’ve blabbered enough for now. You can tell I feel passionately about this subject. Parents need help and resources, and there ARE some available. Recently, my son came to me and said, “Mom, I want you to know I’m happy the way my life has turned out.” It’s not what we had planned for our brilliant Eagle Scout, but he’s happy.
If your child is nearing age 26, where s/he will age out of Your family medical plan, its best to get started sooner than later. It took us 9 months of D being in limbo before we finally got a decision that D is allowed to remain on our plan. It took completion of the form by her MD and a letter from her MD and constant calls from me, a US senator’s office and my insurer to get a decision.
We never filed for SSDI, as we’ve always hoped that D will be able to start working at some point. We probably should have filed for SSDI long ago but as long as D has insurance and is fairly happily living independently, it’s OK.
Yes, we’ve learned it’s mandatory that we always advocate for our son. It’s taken a lot of work to get him in a good situation. I think he would have ended up on the streets without our help, and that’s heartbreaking. He’s a bright, gentle soul.