In addition to providing us with some much-needed respite, my current thought is that this may actually help. She has been fighting to get off her medications so that she no longer needs Medicaid because she wants off SSI {Getting SSI for an Adult Child}.
She feels like I am controlling her (which I am because she is legally a disabled person who is unable to handle more than the most basic care for herself). I've made it very clear that she needs to stay on SSI to keep Medicaid so she can afford doctor appointments and her medications (without insurance the meds alone would cost over $1K a month).
She desperately wants to be "normal," and to her, that means being able to spend her money how she wants to and do whatever she wants to do. The main problem is, she has no concept of money, budgeting, saving...
She is not able to fill out even the most basic forms (insurance being a big one). She does not have the ability to hold more than a part-time job. (She currently works 15-20 hours a week at $8.50 an hour). She cannot drive
When I try to explain budgeting and the costs of living independently, especially if she no longer receives any income from SSI, she just says she'll get a full-time job or 3 part-time jobs. It's like having an argument with a 2-year-old. Reality does not compute.
I decided I would tell her that a condition of her moving in with him is that we all sit down and discuss her circumstances. under the guise of discussing her budget. Since she's actually fairly compliant and I control her SSI money, I can do that.
I decided to create a list of points I feel need to be discussed.
A mom from a Facebook group for parenting young adults with FASD, made some awesome suggestions about how to handle this discussion, and these are some of the takeaway points I got from them:
- Maintain a positive focus about how great it is that they're going to be working so hard at this relationship.
- Emphasize how impressive it is that he loves her enough to be willing to take on a relationship with a disabled person and is willing to take over her caregiving.
- Let them know that we plan to be supportive and will help with this transition because we want them to have a successful relationship.
- Let them know that we will be there for Kitty if things don't go as planned.
- Pull him aside and subtly put the fear of God in him that we will report him if he takes advantage of her physically or financially. With a reminder that legally she is considered a disabled person and as such there could be additional criminal charges if she is not protected.
These are my planned talking points. I do intend to hand them a list/ agenda, but the following has notes I don't intend to share with them. I'd love it if you would note any additional suggestions in the comments:
- This is a Trial Period (just like it was with biofamily). It will be 3 to 6 months before I will transfer Medicaid, SSI, whatever, to her new address.
- Contracts. During the trial period, she CAN NOT sign any contracts that will obligate her to pay money (lease, new phone, non pre-paid credit cards...).
- Caregiver Duties. If they stay together, at some point, he will be expected to step in as her caregiver. I don't plan to emphasize the access to her money part of this and I don’t really think they will make it long enough for it to happen, I just want to use it as an excuse to explain her medical and mental health issues, as well as her budget and why I maintain tight control over her finances. I will tell him that he needs to be aware, that this is a legal position. Taking advantage of a disabled person financially has serious legal consequences.
- She has a Brain Injury (Learning disabilities, ADHD, cerebral dysrhythmia, FASD...), This is a serious, permanent condition. Among other things, it means she cannot handle her own money. She is not able to budget. While I will continue to handle her actual finances at first, he will be expected to help her manage her money, including making sure she has enough money for groceries and bills; she doesn't spend the money she gets from her job until the money for SSI has been taken out; she will need help keep track of receipts for things like her rent.
- She has Bipolar Disorder. Severe enough that she can never go off mood stabilizers and can't use "herbal supplements" or a special diet, or whatever hooey might work for someone on the mild end of the continuum.
- Current Meds and Diagnoses page. I plan to show him this one-page document we give to therapists, medical professionals, and people "on her team" (like teachers and administrators when she was in school). It details things like her IQ and her mental health diagnoses (BPD, FASD/cerebral dysrhythmia/ brain injury). I will be explaining what each of these means and will strongly encourage him to read Stop Walking on Eggshells (which explains more about living with Borderline Personality Disorder from the family's point of view).
{This may seem like oversharing or even an invasion of privacy to some, but I think he needs to understand how severe her issues really are if he's going to be living with her.} - Rent and Utilities. While she will definitely pay rent (as much as she can afford, which will probably be less than 1/2 if you include utilities), if she moves out, her rent money goes with her. Period. Her name cannot be on the lease or utility bills. If this doesn't work out, then she can't afford to be financially obligated.
- Receipts. As part of my Rep Payee duties, I need to document where her money goes. Any money she pays, like rent, will go directly to who it's owed to (like the leasing company, or the gas company) rather than her boyfriend. I'm still debating whether or not I'll do this during the trial period. It's going to add some complications since we won't be reporting the address change yet.
- Teaching Her to Drive. If he helps her get a driver's license, which we strongly discourage due to her issues that affect her ability to drive {Co-conspirator Dreamkiller} They need to understand she will not be going on our car insurance. She'll need to go on his insurance rather than paying her own because she's on a fixed income (and even then, she can't do that for at least 6 months of them being together).
- Full-Time Job. She cannot *plan* to get a better paying full-time job and get off SSI. She has to *HAVE* a full-time job for at least 3 months because historically she has not been able to handle a full-time job (despite what she thinks). She currently works only 15 hours a week.
- Budget/ SSI. We will look at her budget based on her income from her job and SSI (which will show him she doesn't make enough to pay her half of the bills and food).
Her take-home last month was $375. The month before that was $325. Currently, about 1/2 of that has to be saved to make up the difference in her SSI amount (they reduce her check by 1/2 of her gross pay so she won't have enough money to pay her bills if she blows her whole paycheck).
I plan to show BF how more than half of the money from her job has to be saved (“paid”) into a separate account because her income doesn’t affect her SSI money until 2 months after she’s earned it. I will also show him the careful financial record-keeping and monitoring I do to ensure that her SSI money is reported correctly and comes in on time -- so she doesn’t lose it and Medicaid. We will also look at how much her medications and doctor appointments would cost without Medicaid.
I will continue to have control over her finances and SSI, until such point as I decide he can handle taking over (probably never!), which means I will be kept in the loop.
Part of her SSI money will continue to go to us to pay for things like her phone, private insurance, and bank fees, things that don't stop just because she doesn't live here. - Getting to Work. Currently, she's planning on having him drop her off at our house when he goes to work. Since she usually doesn't have to be at work until 10:30am at the earliest and sometimes not until 4:30pm, that means she'd be sitting around our house for hours. When I asked what she'd do if he couldn't bring her over here (it's a 25-minute drive from his new apartment to here), her plan was to take an Uber.
{After reminding her several times to look into the cost, we finally looked up the cost together. A round trip uber from her apartment to work is about $30 - not including tip. Working a 4-hour shift at $8.50/hr means she only makes $25.50! She's very excited about a recent promotion, which means she'll sometimes make $9/hr. She can't grasp that this means she's still only making $27 a shift.} Despite my best efforts, she does not understand that even if she only takes the Uber one way (she would get a ride home from BF). that still means an uber would not be cost-effective.
I reminded her that our town is now on a bus route that connects to the city that the apartment is in and suggested she should confirm the bus route goes to her new apartment (it is within walking distance on this end). She needs to see where the bus route goes and how much it costs to get a commuter pass. She refuses to do this because she doesn't want to ride the bus.
She also needs to *ASK* me if it's OK to stay here (she's planning on having BF drop her off on his way to work and have her spend hours here before and after her shift). - Doctor Appointments/ Medication. She needs to know how she will get to her doctor appointments which are here in our small town and not near BF's apartment. She cannot change to a new doctor during the trial period. I will continue to attend her psychiatrist appointments. She needs to confirm with me that her appointments work with my schedule. She needs to figure out how she'll pick up her medications.
- Pregnancy. If she gets pregnant, he *WILL* be paying child support. He needs to be sure she is on birth control. If she goes off Medicaid, he will be responsible for paying medical bills.
- Moving Out. She will be taking ALL her stuff. Nothing left behind at all. We're not a storage unit for her crap. She will also be putting the room back to "move out" condition, just like she would if she were living in an apartment.
- Moving Home. If it doesn't work out, she is welcome to move back in with us, but in the meantime, I will be moving my fabric stash into the "Hobbit Hole" (a small study she has been using as a bedroom) as originally intended before she had a mental health break down and had to unexpectedly leave the fantastic residential 18 - 24 months long vocational school the state was paying for. So she will have even less room until her "Apartmenette" is done (maybe next year).
As a condition of returning, she will be expected to sign the Boarder Agreement again. - Physical Abuse/ Taking Advantage of a Disabled Person - If he lays a hand on her, we *WILL* be calling the police. We will report him if he takes advantage of her physically or financially. With a reminder that legally she is considered a disabled person and as such there could be additional criminal charges if she is not protected.
- Chauffeur Services. She will be expected to find a way to get to me if we need to go to the SSI office or her psychiatrist. I won't be driving her anywhere unless she's already at my house, and she verifies it is convenient for me *before* she makes an appointment.
- Family Events. They are invited to attend Friday night family dinners, but if the place is expensive, they may be expected to pay their own way.
What Actually Happened
Aaannnndddd.... none of this worked.
Apparently, the boyfriend has no idea she's on SSI and she doesn't want him to know. He has no clue how severe her mental illnesses are. He thinks she's paying us rent and supporting herself with her paycheck and he has no idea how few hours she actually works. We thought it was him pressuring her to get off her meds and SSI, but it was actually her choice because she doesn't want him to find out (and also because she thinks it's keeping her from being an adult).
She saw no need for me to talk to him because she's "going off SSI anyway so he doesn't need to know about it." She refused to let me meet with him and speak to him about any of this.
She's supposed to move in in 3 weeks when his new apartment is ready. Her current "plan" is to go off all her meds (we're talking 2 major mood stabilizers and an antipsychotic) so she can get off Medicaid and SSI. She also plans to get a full-time job (By the way, this month she made all of $375, last month it was only $325).
Of course, all of this is totally unrealistic and unfeasible, but she's 23 years old and she wants to be treated like an "adult" (of course, this is just what she thinks being an adult is like). *sigh* It's like arguing with a 2-year-old.
I told her if she's going off her meds to start now (because I don't trust her not to try to sabotage her SSI as soon she's out of the house). Right now, she's still stable on her meds and so thinks she doesn't need them.
If she manages to get off SSI, it would take months to get her back on, and if she has a psychotic break and/or gets pregnant... someone is going to have to pay all those medical bills.
I told her she can't sign any contracts, including the lease. I also told her I would be paying the leasing agent directly. She asked me a legitimate question - if she's not on the lease, how will she pay rent? I'll have to figure that out because I don't want to hand the money over to the boyfriend. She will need receipts of payments for SSI.
*****
The next day, after dropping her off at work, the boyfriend stopped by to pick up her phone that she'd forgotten. He doesn't talk much, but he asked if we were OK with Kitty moving in with him.
We told him that it was her choice, but if he hurt her... I didn't actually finish this sentence, I just told him to "fill in the concerned parent threats here." We all laughed.
I mentioned that I didn't want her name put on the lease or any other contract until we knew for sure this would work out. He said he understood and at most would be listing her as a roommate.
I told him that I planned to send in her payments directly to the apartment complex, but I wasn't sure how that work if she wasn't on the lease. I told him that we'd have to have a receipt for the government, and we talked about whether or not a receipt written by him would satisfy the government. I told him I'd look into it.
Even though he started it, during this brief chat, he couldn't get away fast enough. I can only wonder what Kitty has told him about us.
*****
Flash forward to this afternoon.
Via text, Kitty accuses me of telling the boyfriend all about SSI and stuff. (I hadn't exactly, although I did hint at it).
She then starts in on how it's against the law for me to not pay her rent for 3 months and I could get arrested.
Via text, Kitty accuses me of telling the boyfriend all about SSI and stuff. (I hadn't exactly, although I did hint at it).
She then starts in on how it's against the law for me to not pay her rent for 3 months and I could get arrested.
Say WHAT?!
{I'm going to paraphrase our conversation and change things up a little, because Kitty has difficulty writing what she actually means to say due to spelling, grammar and cognitive issues, and sometimes we're responding to a text while the other one is typing)
Me: I never said I wouldn't pay your rent with BF. In fact, you and I talked about me paying it directly to the leasing agency rather than giving the money to BF. Although your comment about not being on the lease possibly making that difficult was valid, and that's why I mentioned to BF that you'd need a receipt and I would look into whether or not it would be OK for him to write a receipt.
I did say that this would be like when you went to live with Biofamily, in that this would be a "trial period," but I also told you that I was referring to not telling SSI that we were changing your address for 3 to 6 months in case things didn't work out, because your moving causes a ton of issues when dealing with SSI, so we need to wait until the trial period is over.
This is why I wanted to sit down together. So we'd have numbers in front of us and I could put stuff in writing so you didn't forget or misremember half of what we talked about because you were triggered.
Kitty: But I want to get off {SSI} anyways. So why does it matter? I'm not going to be at your house
Me: Wanting to get off SSI and being ready to get off are two different things. You are not ready to get off for at least 6 months. That's how long it takes for your meds to get out of your system. You need to stay on it until you're sure how your body is going to react.
Me: Did I mention that I think it's a bad idea to try to keep these major issues from BF? If you trust him that little, then you should rethink living with him.
Kitty: I trust him a lot.
Me: Obviously not. From what you said, he doesn't know anything about your medications, disabilities, income, living situation... no wonder he thinks I'm a controlling bitch. He has no idea why I handle your finances.
Kitty: {Responding to my comment, "Wanting to get off SSI and being ready to get off are two different things."}
Then let me have more control let me pay him and let me give you the receipt but you haven't given me a chance to like be an adult.
Me: Obviously you don't remember what happened over the years when your meds weren't right; otherwise, you wouldn't even consider going off of them completely.
Me: {Responding to her comment, "Then let me have more control let me pay him and let me give you the receipt"}
We can talk about that. You haven't mentioned it before now. You've just stomped your foot and acted like a 2-year-old saying, "All by me!!"
{I admit I got frustrated and said some triggering, non-therapeutic things during this part of the conversation}
Me: I'm ready to have rational, adult conversations. Instead, most of the time, you're demanding things that you have repeatedly shown you can't handle, and talking about things like getting a full-time job as though you could walk in to any place tomorrow and be handed one, and going off your meds as though your doctor was an unprofessional idiot and giving you prescription medications, because she thought it would be funny.
Just because you want things to be a certain way, does not mean they are. No matter how badly you want them.
You are physically an adult. Legally, you are an adult too, but there are limitations set on that by the government that say that you need extra help and have a right to it. It doesn't have to be me providing it, but someone has to, and so far no one else is willing to step up and be there for you.
Kitty: {Flipping the switch!} And I love that you have helped me over the whole time I've lived with you, but I feel stuck cause of the meds and SSI. I'm tired of. Being stuck.
Me: I totally get how frustrating it is to be stuck. I truly wish that it weren't the situation you've had forced on you by your past and your genetics.
I feel like you're blaming me for your diagnoses, trauma, and issues instead of acknowledging that it is what it is and working with me to help you find ways to work with it and around it and get what you want.
I think you will not find happiness until you find acceptance for the things you cannot change (your diagnoses ) and courage to take the steps needed to change the things you can.
I hope you know that I will always be here for you to help you figure out what your dreams are, and how to work to achieve those dreams despite, or sometimes because of, your limitations/ disabilities.
I know that you can achieve great happiness. I just wish you would work on it instead of jumping off a cliff and assuming you'll be able to fly just because you want it so badly.
Does that make sense?
Kitty: Yes. But that's how life is. Birds push the babies out and let them learn on their own. And most parents do the same.
Me: When they're ready. Shoving a baby bird out of the nest too soon or if it has a broken wing is evil.
Me: Have you seen this video? You remind me of Karamel the squirrel.
She was badly injured through no fault of her own, but she was a fighter, and her adopted family wanted her to be able to run and play. They helped her deal with her disabilities and found ways around them.
She's a happy squirrel who can run and play. She can't climb trees though. Does that make her any less of a squirrel? Do you think she's miserable because of what she can't do?
She worked hard to learn how to use what she was given and taught, and now she's in a loving family, being a squirrel that can run and play.
{I wish that was where the conversation stopped, but there was a lot more lather, rinse, repeat...}
It boiled down to:
- Kitty doesn't want BF to find out she has "issues" because she is afraid he will leave her. Which means he can't find out she was on medications and that someone has to handle her money for her.
- She wants to be an "adult." She wants to be "normal." She desperately wants to believe that if she gets away from me, and gets off SSI, then that will magically happen. That she actually will be normal, because she wants to be - she needs to be. That I am all that's keeping her from being normal.
- If she gets off SSI, then she loses her Medicaid. She has to have Medicaid to pay for her medications; therefore, she will get off her medications so she can get off Medicaid. Her magical thinking kicks in and she convinces herself that she doesn't actually need her meds.
- She feels "controlled" because I handle her finances and where she lives (in that I can fuss at her if she leaves a mess).
- A lot of my "control" over her is actually her controlling herself because subconsciously she doesn't want to make Mommy upset because then Mommy will leave her (again). {If You Find out I'm Not Perfect, You'll Leave} Half the time it's not even something I'd be upset about.
- She projects her own fears and guilt on me. She feels guilty about moving in with her boyfriend because she thinks it is wrong and terrified that he'll leave her, so she accuses me of trying to break her and BF up because I want to "control" her. I point out that while I do tell her when I think she's making a mistake, especially if it's a major mistake, that's all I do. I give her my opinion. She projects her own feelings of fear, guilt, and/or shame, and "hears" ultimatums and threats.
As an example, I pointed out to her that while I did tell her that I don't think moving in with BF (or Biomom or Biofamily) is a good idea, I didn't stop her. I didn't disown her. When she was ready to come home, I allowed her to come home and didn't say, "I told you so." - I admit that I have "threatened" her with ultimatums and tried to force her to not make certain choices, but those choices are either life-threatening or severely affect her future or both. When she wanted to move in with biomom with less than 2 weeks notice, that meant she would be without medications and not under a doctor's care. At a vulnerable time, she would not have any supports.
I've seen what happens when she is not on her meds. It is life-threatening. She becomes suicidal, she rages, she hallucinates.
Pregnancy is equally life-threatening - If she's on her meds, then in addition to her genetic toxic soup, the poor baby is being "pickled" in major psychotropic medications. If she's off her meds, she will become psychotic or suicidal, and the baby is being "pickled" in stress and anxiety hormones. When the baby is born, if she is allowed to keep it, then the child is being raised by a seriously mentally ill mother. Either scenario is dangerous for both mother and child.
I've tried and tried, but nothing less than an ultimatum works {usually the threat of us getting legal guardianship} and even that rarely works, and of course it triggers her even more. {Running Again}
*****
In the end, we agreed that:
- I would put the money in her account so she could pay her rent on her own. She's supposed to contact the social security office to see if they will accept a handwritten receipt from BF. Hopefully, she won't tell them that she's moving, but she might try to sabotage her SSI that way.
- I told her that she can't just call and tell SSI that she doesn't want SSI anymore (I hope I'm right and/or I hope she never tries).
- At some point, we will have to talk about budget again with numbers she will get from BF. In general, if she asks me for money, then I will give it to her, as long as it is in her budget.
- We kept getting stuck on the fact that I won't just hand over the SSI money or let her cancel SSI. I finally hit on the fact that if she wanted to get rid of it, all she had to do was make more than $1400 a month (the max you're allowed to make and keep SSI).
UPDATES
One month later:When I finally got all the numbers, I realized that Kitty's monthly SSI money covered her share of the rent and utilities and about $60 for groceries. Rather than me having to tell her that she can't afford things, I can just transfer the full amount at the first of the month. When it's gone, it's gone. There was no extra, so there was nothing to argue about.
She's still taking a half dose of one of her mood stabilizers (and possibly more) because deep down she knows she needs her meds.
She's also decided to stay on SSI/ Medicaid for now.
Biomom shared the link for this post with Kitty (I do not block anyone from reading this blog because I think transparency helps other parents, which is the whole point of my blog), but generally, my kids don't bother to read it.
I thought it was interesting that the only thing that upset Kitty about this whole post was that I mentioned we would push for BF to pay child support if Kitty got pregnant?!!
Oh, and that we won't automatically pay for her and BF's dinner if she joins us for family dinner. That one doesn't surprise me though, it's about food.
Eight months later:
I'm happy to report that I was wrong. While not perfect, Kitty's life seems to be going fairly smoothly. Much better than I'd expected.
- She's dropped down to a much lower dose of her meds and seems fairly stable. (We'll know more after she hits her next depressive cycle).
- She has quit/lost 3? jobs and is currently unemployed but seems to be capable of living within her means (SSI).
- She has taken over managing most of her SSI benefits (although I still do all of the actual dealings with SSI). She claims she is saving the money from her paychecks that she needs in order to ensure that she has enough when her SSI benefits are reduced by the amount earned from 2 paychecks before (for more info about SSI benefits and working, see this post - Getting SSI for Your Adult Child).
- She is not pregnant and seems happy with her cat as her "fur baby."
- She got engaged at Christmas and is ecstatically planning her wedding (which is almost 2 years away - I think because she wants to lose some weight first?).
- I have informed her that getting married means she loses her SSI and Medicaid benefits - Marriage and SSI Benefits and suggested that she have a "commitment ceremony or something, but she chooses to believe that she will find and keep a full-time job that provides full benefits. *sigh*
- I don't think she realizes that she'll also lose the backup of our private insurance when she gets married. I need to let her know that.
