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Hello. If I remember correctly, weren't you a caregiver for your mother? And if so, did you have legal guardianship over her? If that is too personal a question, then please don't answer. It's just I don't know anyone that has ever had guardianship over an adult before. No one in my family has ever needed a caregiver.


I know you're aware that my son is autistic. He's 18 now. He had an IQ test when he was 10 and his performance IQ (whatever that is) was 65 and his nonverbal IQ was 85, giving him a full-scale IQ of 70. He also has low muscle tone and a connective tissue disorder called Hypermobility. He has overall pervasive muscle weakness, along with severe mental health issues of anxiety, ocd and anorexia. With regards to his anorexia, he is doing much better. He's gained half his weight back that he lost. When he gets anxious he loses his appetite. It's not a case of where he thinks he's fat and wants to lose weight. But still, weight loss due to anxiety is still called anorexia.


Well, flash forward to recently, my son's doctor told me it's time to start making decisions about my son's future. I said like what, he lives with us and we have the means to support him. He said you need to apply for SSI and Medicaid for him, and you need to immediately get legal guardianship of him. I said I'm his mom, I have always made those decisions, and he said it's different now that he's an adult. I said but we can financially support him, and he said this is about him having access to medical services and other benefits that your insurance company doesn't offer, and Medicaid opens the door to that.


I called the court house and they had me come and pick up a huge packet of paperwork that has to be signed. Two doctors have to sign it saying my son can't make decisions for himself etc. The courthouse said I can handle the process myself without going through a lawyer. Medicaid told me Friday that until my son gets SSI he won't qualify for Medicaid, because dh's income is way too high. They said under the age of 21, household income is factored in.


I have to make a court appearance and tell the judge why I am the best guardian for my son. I've never been in front of a judge before. I'm a little scared to do that, but it has to be done. I hate that there's going to be no privacy and that people in the court room are going to listen to my son's medical issues. That doesn't seem right, at all. I wonder if I could ask him to handle our case in his chambers? Oh, and I have to be finger printed too. That seems excessive to me; I'm his mom for pete's sake. It's not like I am a stranger adopting him or anything.


Anyway, if you've ever been down this road, I would love any advice you have. The woman at the court house said the process takes about a month, from the time they get the paperwork to the time of the court date. I also have an appt with a coordinator on the 31st and she's going to do an intake on my son. She said it will take 2 hours, and that he is required to be there. She said for me to be prepared to tell her everything I do for him, on a daily basis. She said make a list and have it ready. She said it's an Adaptive Skills intake or something like that. She said not to leave anything out. She is also ordering an updated IQ test. It's going to cost $240. She said I could get it for free through our local school district, since my son is under age 21. But I want to get it done through their disability services center. I did ask though if he could have the Wechsler Adult IQ test, since he had the Wechsler Children's IQ test. I thought staying within the same time of test would be beneficial. She said she doesn't administer the test, but that I could bring it up to the person who will do it.


I wonder if all caregivers have to do this? I mean caregivers where there is an issue of intellectual disability or dementia etc. If you have any experience with any of the services I have mentioned, I would be grateful. I don't belong to any autism message boards or support groups or anything like that. I know if I ever got cancer etc I would not go to group meetings. Listening to other stories of hardship wouldn't help me, at all.


Thank you in advance for reading this, and for any insights you have.

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Oh sweetie, sorry you have to go through all this. I didn't have custody of my Mom, didn't go through any of this. I will say, I've dealt with judges, and there is nothing to be afraid of. They'll be helpful, it's not like when someone is going to jail. :)


The fingerprints are to run a criminal background check. There are people who will take advantage of their disabled children. It's not you, they deal with thousands of people who will be handling someone else's money; some of them are bad, and they have to weed them out. I've had to do the fingerprint thing to teach and to get an insurance license. Piece of cake. Plenty of non-criminals have to do this, so don't be embarrassed or take it personally.


I know we have some social workers on here who will be familiar with what you're having to do. They'll speak up and shed some light on all this paperwork and tests. Just hang for a few. You know it's slow on here on the weekends.

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I’m a social worker, but I can’t give legal advice. Getting guardianship is a good thing, it will help. Apply for SSI as soon as possible, it will give your son income and Medicaid. But, you can set up a Medicaid approved trust for his future, and you probably need legal advice. In Ohio there are approved Medicaid trusts which will provide for your son’s care for the future. Ohio makes it kind of easy tha t you done need a lawyer.

My DD is disabled and on SSI and Medicaid. I’m her rep payee only. She is pretty functional but can’t manage her finances at all.

I’m afraid I don’t know the guardianship process in NY.

Is you son involved with any centers that can help?

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I think they will be very discreet when questioning you. It won't be like you have to blurt out answers in front of a whole courtroom. They will probably call you forward with your son to the table where the judge sits and go over things with you. They're not out to get you, they really are there to offer help.


Thinking of you.

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Oh, I'm not looking for legal advice. I'm definitely only looking for any guidance through this process, that's all. Thank you both, so much, for responding. The woman who is doing the adaptive skills intake is someone who used to work for social security in terms of determining disability. At least that is what I was told by one of her colleagues. I was told that she knows what SS looks for in terms of disability. When I called her, I left a very long voicemail and basically let it all hang out. I told her everything about my son.


She called me back at the end of the day, and said she listened to my entire voicemail, and she said if everything you're telling me is true (it absolutely is), then your son is going to qualify for SSI. That is when we made the appt for the 31st and where she mentioned the IQ test.


Now that he's an adult, Tom is going to get services at the local center where they have day hab. Day hab is where disabled adults from the area come for 6-7 hours a day to get therapies and meals, arts and crafts, counseling etc. Tom is not going to do day hab, but he's going to get his therapies there. He's getting a PT evaluation 8:30am on Tuesday. The OT has been on vacation, so an evaluation with them will be set up tomorrow I would think.


Just to give you a hint about how my son thinks, I asked him the other day can you tell me how an apple and an orange are alike? His answer "they're both round". I said can you think of anything else how they are alike, and he said no. I also asked him if he knew what fire insurance was for and he said so you can have a safe fire? He has no concept of anything abstract. He would have no ability to handle finances, at all. I will look into a Medicaid Trust. Our house is close to being paid off. We were going to leave the house to our younger daughter with Tom having a lifetime tenancy. I wonder if his having SSI or Medicaid would affect that? Or if that is what a Medicaid Trust is all about?...I'll look into it. Thank you, CosmosHuman for telling me about it.




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  • 3 weeks later...

Dh and I did the background checks. That was pretty interesting. We had to put all our fingers on the scanner, and then one finger at a time. They also took our picture. It only took about 5 minutes for each of us. They said we would get a copy of the report in about a week or so, that was 8 days ago.


I had a 2 hour appointment with a coordinator to the OPWDD. It felt more like 4 hours. She said at the end of the appointment, "I shouldn't really be saying this, but your son qualifies for our services". And then she sort of looked down and lightly snorted "I mean all you have to do is look at him and you can see he is disabled". She instantly made me not want to work with her.


She rattled off some of the many the services and I said we don't need any of them. He is not going to dayhab, and I don't need respite. (I really don't. I am not stressed by my care-giving, I enjoy it). She ignored what I said and said let's get your son qualified and then we can talk about the services at another time. She said are you going to put him in a home? I said no! She said so you are going to take care of him until you age out, is that it? I said yes. She said I have a 87 year old lady taking care of her 67 year old son, and what's going to happen to him when she dies? When he has to leave the only home he has ever known? I said perhaps family will take him in, I don't know. She said I think you should put him in a home to get him used to it, now. I said no! She said you cannot hover over him his entire life, you know. I said hover? How can you say that? You don't know me, she said I know moms exactly like you, that have stayed home and cared for their disabled kids and then the kids grow and have to make huge adjustments when the parents die. I said so i should do what my parents did to my mentally challenged brother, They dumped him off at an institution when he was 6, and turned him over as a ward of the state and then lived the rest of their lives like he doesn't exist. I said I am not doing that. I choose to be his caregiver instead of having the state of NY do it, and I want you to respect that.


She said hold on, I'm going to call so and so and you can set up an appt for the IQ test. She talked to the woman for a few minutes and then she said to the person on the other line in a whisper "I'm telling you, he qualifies, there is no reciprocity, he hasn't said one word to me", and then she handed the phone to me and the woman said since your son is nonverbal he needs the Leiter IQ test. I said he is not nonverbal, he speaks. I said I want him to have the WAIS, and she said in light of his diagnosis we would only offer the Leiter test, and then I said then I will go through the school district, which we did.


I called the school and they were more than happy to have my son take the test with their psychologist. We went there 3 days ago on Wed, at 8:30am. At 10:30 and they were still in there. During that time I filled out a Vineland Adaptive Behavior Scale report for them, but after 2 hours I was wondering what was going on. I knew the school was having a lock-down drill at 11am and I knew we had to get out of there asap. Finally the psychologist, who is an older woman, very tall with really pretty gray hair, came out to get me. The look on her face was full of pity. And I knew it was going to be bad.


I figured the criteria for the adult test was going to be a lot harder. Obviously, we expect adults to know more than children.I figured my son's full scale IQ was somewhere around 60-65. I couldn't have been more wrong. She looked at me and softly said "First, I want to say you have raised a wonderful young man. I wish the student body tried half as hard as he did this morning, and I know he was getting tired, but he never complained once. He is a very nice man, and I enjoyed working with him. She said you will get my report in about a week". I said wait, I can't leave without knowing his IQ, I know you have the numbers. Please, just give them to me. She looked at me for a long moment, that seemed to go on forever, but she eventually got out a piece of paper and pen and started writing. When she was done she handed the piece of paper to me, and from that moment I can honestly say I was in shock. I didn't hear anything she said after that, though I know she was explaining to me the numbers for each of the categories of the test. I got up and left with my son. I left my jacket on the back of the chair in the guidance office where I did the adaptive scale. As soon as I got home I realized I had left it there, and at that same moment, the phone rang and it was the psychologist telling me my jacket was there. I told her I would pick it up at 1pm, and then I just sat on my couch in the living room, in a stupor. The test had to be wrong. There is no way this was his IQ.


I went back to her office and she was waiting on me. She called me into her office and I said I'm in shock. I didn't feel anything close to this when he was diagnosed with autism. She said I know you are shocked by these numbers. I said how can my son read and write with an IQ this low. I said he was reading and spelling fluently at age 5. He has never misspelled a word in his entire life. She said because IQ tests don't test for THOSE things. They test for visual perception, problem solving and reasoning, working memory as well as processing speed, and verbal comprehension. (Tom understands very little in anything he reads). She said Tom has strengths that other intellectually disabled people don't have, be thankful for them!


She said your son undoubtedly qualifies for SSI and I encourage you to file, right now. I said we have an appt on the 21st. She said good. She said I know you're in shock, but your son hasn't changed, only the difficulty of the test did. Your son did not lose anything. I said yes, he did, he lost almost half of his IQ points. She said the IQ test does not test for the entire brain's abilities, only a select portion of them. She said your son timed out of some of the tests I gave him, like the symbol search. She said I bet if I gave him several hours he would've gotten them all right. I said how many answers did he give in the symbol search, and she said he was able to answer one. She reiterated that processing speed is a big part of the IQ test.


She said the child IQ test scoring was changed a few years ago and that my son's 70 IQ would've been much lower by the newer standards. I said my son told me you showed him pictures of a plane, a bed and a basket and asked him to name them. I said those questions are on the adult WAIS? She said I couldn't give your son several of the subtests because we have to ask them some questions before each subtest, to see if they qualify to even take it. And he didn't qualify. I said you did the digit span test, though and she said yes, and your son can remember two numbers. She couldn't test him where I guess you put the numbers in numerical order. She said she gave him 3 numbers and after he said 2 of them he would restart all over again. She started off the entire IQ test with blocks, and asked him to make the exact design that she showed him. He could do it with 2 blocks but when she handed him 4 blocks it was too much. There are designs on each side of the block and he couldn't do it. He also didn't know what the word assemble meant.She asked him how a horse and a tiger were similar and he said they were big. She asked how broccoli and carrots are alike and he said food, which he got 1/2 credit for.


So his fullscale IQ is 42. I asked her what the lowest score you can get on the WAIS and she said 40. He also got the lowest adaptive score she had personally seen. It's 23, and the lowest you can get on the Vineland is 20.


We have an appt with a psychiatrist on the 18th to sign off on the legal guardianship. You have to have 2 doctors, and I found out the judge here wants it to be from the person's own family doctor and then a psychiatrist. I saw the paperwork our doctor filled out. He said Tom's disability is a developmental disability that is permanent, and that he should not be subjected to go to the court hearing.


I'm slowly coming to terms with everything. At least my son will have access to medical care and services, and he will have a small income. As for the rest of it, all I can do is wake up each day, and do the best that I can for him.



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It sounds to me like you are doing a terrific job, that you've brought out his real abilities. That first counselor is an ignorant dolt, and should be in some other line of work. She apparently doesn't have the capacity to empathize with others. Do not let her get you down. Maybe she'll learn something, who knows?


AFA being shocked at the numbers, these tests are standardized to an entirely different group of people. Sounds like the school counselor is very good. Hang with her. :)

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  • 2 weeks later...



Just a small update.


We went to the local Social Security office this morning. Our appointment was at 9am. The young woman that handled my son's case was so nice. She was really pretty with curly black hair and green eyes. She had an edge to her personality, like someone who had seen a lot of BS in her line of work, but she softened up completely when she saw my son get up and start walking slowly while rubbing his hands. Immediately, she looked at me and smiled.


We sat down at her desk, and I commented that all the chairs were tied together, and she said yep, that's so people can't throw their chairs at me. I said why would someone do that? And she said when we decide to take their SS check away.


I guess that's why there's 2 policemen standing by inside the office, too. Anyway, she stared at Tom for at least a full minute, and then she said, you know what I'm going to do? I'm going to do a "full application" right now. I don't do this very often, but I'm going to do it for your son. She said I'm going to start by having you apply to be his payee. I said okay and I had to answer a bunch of questions, which I answered honestly. She said are you opposed to a background check and I softly laughed and said I just had one for the surrogate court. She said we're not going to do one on you, but I have to ask if you would agree to it. She then said I'm going to ask you a series of questions where you need to answer and I will be recording you. So, we did that. Then she gave me a bunch of information about getting a bank account for my son etc.


Then, we got to the Medical part. I gave her all the documents I had. She said the IQ was the most important but she took everything. I said do you think he'll qualify? She didn't say a word but she nodded her head assuring me. She said when it's this type of case, they often have a quick turnaround which can be 3 weeks or so. She said otherwise it could be a few months, but she didn't think that would happen here.


She said they also have a part of the application where the intake person (her) puts in their own comments, if they want, of what they think about the applicant. She said she was going to put in comments about Tom, and that she thought it would help his application go faster, but she said you never know if it will or not.


She said has your son ever worked or made any $$ and I said no. She said so can we run a payroll background check and I said sure, run any kind of check you want on him or any of us. She said how much does he financially contribute to the house? I said he doesn't, like I told you he has never worked. She said I know, but I have to ask the question. She said he WILL have to contribute to the house though if he gets approved. Then she started asking me how much our food bill, electric bill, and mortgage is, and she said he MUST pay 1/4 of those bills if he gets SSI.


I feel horrible about that. I had fully intended on letting that $$ add up in his own account, and that it would be there for him if something happened to us, but she said no way, that is not what SSI is about, and she respectfully schooled me on the program and what it was intended for.



The woman from the Social Security office just called me a second ago, while writing this, and said she had already submitted the application and that she indeed did put her comments in about Tom. She said she already mailed my documents back to me in the mail and she gave me her phone number and told me to call her if I needed anything.


Now, all that's left to do is wait and see..


As for the psychiatrist we were to see, he flaked out on us, and canceled 10 minutes before we were to leave for the appointment. :glare: I looked online for reviews on this guy, and read about 30 comments on him and they ALL, every last one of them, say he cancels appointments ALL the time, sometimes 3-4 times in a row in fact. The reviews are full of ticked off people. Even the reviews that say he's a great doctor and very caring, also complain about his incessant canceling on them. We have another appt next Monday, but who knows if we'll see him or not. :angry: We need his okay for the guardianship, so we're tethered to this guy.


Speaking of guardianship, I found the lawyer we're going to use. His secretary said on the phone I've done half the work already, and that they won't be charging us the full amount they normally do, which is $1500. $1500! :swoon: Our appt with him is July 2nd.


Anyway, just a couple updates as I go through this process. Have a great day, everyone! Please don't feel obligated to reply. Getting these feelings off my chest is quite therapeutic.



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$1500 for guardianship, depending on jurisdiction is NOT unreasonable. That represents about six hours in that field. Remember that there are MANY divorce attorneys receiving better than $400 per hour. I have a standing federal court order that permits me $350/hour when I testify in matters in the Western District (which is ALSO a reason few attorneys like doing crap like credit where there is no meaningful payout for most of the work).


While some components of guardianship are very pro forma, there are other cases that will be intensive and go far beyond the initial court appearance...you are also paying for the sake of having them on hand to get an expedited ex parte Order if something arises where it is needed and where the pro se guardian may be lost in the courthouse trying to even GET on docket.

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  • 2 weeks later...

Thanks Centex. I don't disagree that our lawyer deserves to be paid well for his services. I guess I was just momentarily shocked at the $1500. For some (dumb) reason, I figured the cost would be around $800 or so.

We're seeing the lawyer tomorrow @9am. He's charging us $75 for the initial visit and to answer our questions.

Just a little update on the SSI. Some guy, well, now I am figuring him to be the examiner who has been assigned to my son's SSI case, called me on Thursday morning. I had no idea I was going to get a phone call. It was only a week after our initial appointment to apply. I didn't know who this man really was, so I was carefree, totally honest, and an open book to anything he asked.

His attitude reminded me of the police officer in the Flintstones who was arresting Fred for stealing the piano. He had that sort of attitude and syntax.

It's safe to say I drove him bananas. lol

He called our house, identified himself as calling from the SSA, and said he had a few questions about Tom. All the questions he asked me were questions I had already answered on the Vineland Adaptive Scale report. 

He asked me if Tom uses belts or buttons, and having the endless gift of gab, I took the SSA guy on an odyssey back in time to when Tom was little and how he couldn't maneuver either, so all his clothes now have neither. The SSA guy said mam, all the questions are yes/ no, okay? I said okay. And then he asked me another question about Tom's social abilities and it really didn't seem possible to answer yes/ no, so again I told him how he looks at no one and he wants no one looking at him, not even me, his mom, and how much that hurts my feelings at times..

The SSA guy said look, I have a series of questions for you, and only a limited amount of time. Now, I can send this questionnaire to you, if you'd like, and you can mail it back which will take a longer time, or you can answer these questions yes/no and we can get through it quickly. I said, I'm sorry, I really am.  I will answer your questions faster, I promise.

He seemed softened by that and said "Look, I am surrounded by cases,  hundreds of cases, the majority being nothing but a complete waste of my time. Your son's case is not one of them, okay? So, let's get through this so I can give this case to the doctor." I said okay and I apologized again and answered his questions quickly.

At the end he said now I am giving your son's case to the doctor. He may send you paper work to fill out or he may not. But whatever you do, do EXACTLY what he says to do, okay? I said okay, and then we hung up.

I wonder how soon it will be, before we hear something?

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I just spoke to the local Social Security office rep, the woman who handled Tom's case when we applied. Yesterday, I left a quick question on her voice mail, and she returned my call a moment ago. My question was related to her telling me to go ahead and make a checking account for him, and make me his Payee.

I asked her if I should wait first and see if he gets approved for SSI. She told me that there's an update. She said the SSA examiner found Tom disabled, and now his case is off to another department to review it. She said they review cases from time to time, and I said does that mean his disabled determination could get overturned, and she said I think everything's going to be fine for him, and I think you will hear from me very, very soon with the decision. I can't believe it's happening this fast, it's only been 12 days since we applied.

Dh and I saw the lawyer yesterday. We aren't going to use him. To be honest, he's really young, and he had zero experience in the Article 17a guardianship, by his own admission. He even told us we could file it ourselves, and that it's a straightforward process pretty much... One thing that rubbed me the wrong way was I was told on the phone it would be $1500 minus the work dh and I had already done, but at the appointment he said it would start out at $1750, and go from there. I didn't like that. Dh wants to do this pro se now.

I'm going to keep this little thread going just until we get the disability decision. It's been a nice diary to refer to, and has enabled me to get my thoughts out... I haven't told anyone in our family, let a lone friends, we're doing this.  Thanks to anyone who is out there listening..

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  • 2 weeks later...

The last post in this topic was posted 1010 days ago. 


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