Parents of disabled kids thread...

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801

Before I had my S select his U, you bet I called and talked to each U about how they’d work with him. I had expected the smaller U would be more collaborative than larger Us. I was sadly disappointed in small U who said they’d ask S to withdraw from the U if he missed 2 weeks if school in a quarter, regardless of whether he was able to stay current with the schoolwork. I was really taken aback and very disappointed. S threw their acceptance in the trash and refused to gave them any further thought.

The other Us promised to work with S and us. They indicated they had had other students with health issues similar to S who had done well at their U. They also encouraged us to go to the U before move in day and establish relationships by seeing several of their MDs at their med school for care, if he needed any care on campus during his years there.

802

Honestly we found out how the services actually worked once my kids were on campus. You want to start with Disability Services, but also realize that they may not actually be the source of help in reality: often it is doctors, therapists working with deans and other staff.

The Disability Services office will provide letters for your daughter to give professors and after that it is up to her to negotiate, usually, often with support of doctor or therapist. The letter may or may not list accommodations desired, and won’t have the diagnosis, though professors can usually access it on file.

Options should include single room (which may or may not be helpful and can be stigmatized at some schools if only students with disabilities get them- being honest here), extensions on papers and projects, note takers, postponements of exams if possible or exams given alone in a room, extra advising, excused absences for appointments, and so on.

I suggest making your own list and including them in a letter for a clinician to sign. In my experience the clinicians appreciate this and that way you can ask for what you think will help.

It is good to find a school that does not require withdrawal and reapplication. Many schools will give a medical leave- make sure that is possible. In fact, medical leaves actually can wipe bad grades off the record if the cause is due to her diagnosis.

Make sure to get tuition refund insurance. Set up therapists.

Smaller schools may not have a Disabilities Office. A dean may handle things. In our experience it is hard to prejudge understanding, kindness and even the structure of help available. One small school with no Disabilities Office was extremely helpful. One large, selective school that we expected to be cut throat was incredibly understanding.

You can do your best to find out in advance of course, but the presentation may not match reality, for good or bad.

803

Agree that providers like to have parents draft a letter with suggested accommodations that would help your child and are similar to those obtained by other similar students.

We also had an appointment with the head of the disabilities office on campus before move in day, just for him to meet our student and our student to know where the office was and feel welcome there.

804

My son is struggling today. I told him if he has to go to the hospital I can’t go with him, nobody can visit him, and he would have to self isolate for two weeks after getting out. I don’t know where that would be because we couldn’t risk it with my husband here. His house wouldn’t take him, either. ? Ugh, dealing with my dad and my son at the same time is draining.

805

So sorry for your son MLH. My D is struggling right now too, she lives for her social connections with her friends and mental health “family”. However she hasn’t had ECT which is really a double whammy for your S so I can only imagine what he’s going through.
My kiddo talks to her therapist and psych by phone or video chat but it’s just not the same. One thing that helps a wee bit is she is in an online group that plays D&D, they play it constantly probably because everyone is home and has nothing better to do; when she’s not doing that she takes the dog for a walk or plays Syms or Animal Crossing. She has crafted a daily routine that seems to be helping a bit too, I didn’t have any input as to what she would do with her time but I do help her stick to her routine, it’s the only way she would remember to take her meds without my reminding her. I still check in though.
She wants to go to the hospital but doesn’t want to deal with the quarantine afterward either, thinks that would be worse than now. We went on a long drive yesterday in search of supplies, and it helped her feel a bit better just to get out of the house and see that the world is still there, which actually tests one of her delusions, something she says she does constantly. People are still driving their cars and walking their dogs. Dunkin donuts drive-up is still operating (guess how we found that out :wink: ). Target had toilet paper and fresh fruit. Life is going on, just 6 feet differently. With hand sanitizer and nitrile gloves.
I feel for you and hope you are getting the chance to take care of yourself too. It’s so hard to watch our children struggle. Then to watch your parent struggle at the same time must be so difficult. Sending you a cyber hug.

806

@morkatmom, thanks. How is your daughter doing now? My son seems better. We figured out that they didn’t give him him his morning meds after ECT last week and that may have been the problem. Yesterday, I gave the meds to him as soon as they brought him out to the car.

TBH, it is tough having him here because he hangs around us all the time. I keep having to come up with ideas of things for him to do (play guitar, go for a walk, listen to an audible book, etc.). When I ask him to do anything constructive, such as fold his laundry, he’ll say, “I get a bad feeling when I think about that…” I really don’t think he’s just being lazy - it literally makes him feel bad. Sigh. His two younger siblings will do things with him occasionally. I should probably ask them to do more. They don’t seem to mind, they just don’t think of it very often.

807

My kid made the interesting comment that this situation removes so many sources of stress in her life, “like being late for work.” She seems remarkably calm. Who would have thought…It’s only been two weeks so we’ll see. Her MD has added Zofran so she could get back on Lithium, a godsend.

808

Is anyone here a representative payee for their kid? I have a few questions.

I am wondering what is OK to spend they money on and what isn’t? (beyond the obvious like food and rent) He works at Walmart and controls that money himself. He pays his rent and electric bill just fine. For some reason the SSA doctor would only approve his SSI application with a rep payee requirement. Can I use it on his car payment and car insurance? Can he buy furniture for his apartment with it?

Also, my son lives alone. The letter we got explaining the SSA forluma for how much the back pay is says the SSA thinks he is living with a dependent adult. He lives alone. I called the SSA today and they said it didn’t matter. I don’t understand why family size doesn’t matter?

809

I’m a rep payee for my son. Any legitimate living expense is fine. Cable, clothes, going out to eat, or even movies.

They used to make parents who are rep payees fill out a report every year but they recently ended that requirement. So I don’t worry about it anymore.

I’ve never understood how they figure out benefits and gave up trying.

My main advice is that if ANYTHING changes, you need to contact SSA immediately and document the phone call. Work, living arrangement, hospital stay, etc. I didn’t understand that at first and it caused big problems.

Don’t be surprised if something gets screwed up. If so, contact your congressional representative and ask for help.

Do you know about ABLE accounts? A person can save money in them and they don’t count as assets for eligibility purposes. I am an ABLE ambassador this year and can get you more information if you need it.

810

Worried about kid with type 1 diabetes 3,000 miles away. I have always gone to the hospital with her. Docs and nurses, heroic as they are right now, don’t have the slightest idea how to manage and some hospitals even remover her pump because the nurses aren’t trained. As long as my kid is conscious and able, it will be okay. I can support via Facetime. I would honestly consider getting on a plane.

811

A question about ABLE accounts, if you don’t mind, @Maine Longhorn. My DD was approved for SSI a few months ago and just received a several thousand dollar payment to cover the many months her application was being reviewed. Can I deposit some of that money in her ABLE account? Is that a qualified expense? TY for your advice.

812

Yes, you can! Up to the limit, $15,000 per year.

813

Thank you ML!

814

I am concerned that students with medical conditions will be left out of the equation as colleges decide on what to do. Every article seems to assume relative health of young people but the need to protect older faculty and staff. What about students who are also more vulnerable to the virus?

I realize they could be accommodated with online instruction but that doesn’t work well for some fields of study.

815

@compmom I understand your concern and share it. I don’t really know what to say or do about that.

@MaineLonghorn you have probably touched on this before and I can’t figure out how to start. I am my son’s representative payee and that only for his SSI money. He is doing an OK job of managing his job money on his own. My question is, should I become is POA for medical stuff?

He just recently moved to another state. I filled out a medicaid app for him last week. He got a letter a few days ago saying he was approved but there was no card in the letter. I called the DHS of his state and they would not say much to me since he is over 18. They did say that one of 2 companies would be handling his coverage and they may or may not send a card. They gave me the phone numbers of both companies. They knew which company is his but would not tell me.

I doubt my son will call and ask for the card. He never wanted to apply for SSI and is resentful that I forced the issue. He needs to see a psychiatrist every 2-3 months just for med refills and then he needs to pay for those meds. He has never been hospitalized and is fairly stable as long as he gets his meds. He will follow through and get the meds and he will make his own doctor’s appointments and get himself there.

Do I just let it go now and let him suffer the consequence of not having a med card if he won’t call and ask for it or do I try to become his POA so that I can help him with this stuff, knowing that his lack of motivation in making a phone call is related to his disability?

816

@bajamm, my son has signed releases for me to speak to everyone, including DHHS in our state. I don’t have MPOA for him at this point. If he will let you, being his MPOA would probably make sense. Then you wouldn’t have to get individual releases signed all the time.

Another thing that has helped is that when I actually found a HELPFUL person at the local SSA office, I got his telephone extension. He said I can call anytime I have any issues with SSA. I’ve called him at least once since then. Developing a personal relationship with these people goes a long way (“How many kids do you have? Where are they?” etc.). And I am unfailingly polite, even when I’m very frustrated with the system.

817

How are your kids doing through all of this? My son has been with us for over two months. His program called to see when he would be moving home. We decided we’ll take him back to his apartment tomorrow. He seemed fine with the idea yesterday, but today he admitted he is feeling very stressed about returning. Sigh. I helped him write up a shopping list and took him to the grocery store. He has a ton of money on his state debit card. He said he felt better after shopping.

I hope he does OK. I don’t have a great feeling about it. Unless there was absolutely no other alternative, I don’t want him living at home. It’s not healthy for him or us.

818

My D has been great here. She is very adaptable and seems pretty happy here, though of course she misses her life in LA.

I’m relieved she’s here with us as there is very little unrest here and incidences of COVID are pretty rare.

She and S help keep one another company, so I think that helps all of us keep sane and more cheery. H and I are up early and they are up late. S is supposed to be living a condo in DC, but is fine sheltering with us for now. Both LA and DC have higher rates of COVID and unrest right now. The condo has lots more common areas—we have a single family home. Lots of space in our neighborhood with low density and everyone in neighborhood gets along.

819

My son, who has autism and who returned to finish college after a ten year checkered academic history, is doing well. He opted to remain in his apartment in Michigan. He doesn’t miss social contacts since he barely had any before covid, and those he had were already online. He does miss playing hockey.

He will be working in a local grocery store over the summer. He is happy about this; his mother, less so. But after all, someone has to do the essential work. I made him a pile of masks and sent them to him, along with a bottle of hand sanitizer and a goo tube to carry a small amount of it.

820

@Mainelonghorn transitons are so hard!