Family and Caregiver Schizophrenia Discussion Forum

Nearing Adulthood


#1

Our daughter is getting older and I have heard a lot of negative things about legal changes once your loved one reaches adulthood and you no longer have access to their medical records or any sort of information. Is there anything I should know now, or that I can do now to prepare for those changes and make sure we have the best opportunities to help her stay on track?

Right now she is medication compliant and she is mostly avoiding psychosis, although any bit of stress brings on hallucinations. I just worry if she got to a point that she was not in touch with reality that we wouldn’t have any recourse to help her.


#2

While she’s well, you can see if she’d be willing to sign a mental health advance directive that gives you rights to make decisions for her when she’s not capable of making them herself and to talk to the medical team.

I never got my son to do that & had the same fears you had.

His psychiatrist at the time avoided the issue by allowing me to attend the appointments.

I had problems with insurance companies even before he was 18, but they seem to have loosened up a little bit. I also had some doctor’s offices that wouldn’t let me make an appointment for him or check an appointment time without his permission. I know they’re abiding by HIPAA, but it’s kind of hard when he’s not capable of getting on the phone.

As far as hospitalizations have went, he’s always went in on involuntary holds and signed releases so we could talk to the treatment team there. Well, the first time he wouldn’t, but once he knew what was going on, he did really quickly because he wanted me to advocate for him.

Some people here have gotten guardianship - that’s a legal route that gives you more rights and that would not be in her power to retract like an advance directive.

My advice is to maintain trust as much as you can so that she’ll allow you to help her. Even guardianship won’t give you the power to force treatment on your own if she refuses.


#3

@TotesMaGoats. When my daughter officially became an adult I applied for guardianship. It’s a lot of work and responsibility but it does help with communicating with her mental health care providers.


#4

My husband and I applied for guardianship. First, we explained to her that we would use this only for practical purposes, like being able to locate her if she became ill away from home (without guardianship, a hospital won’t tell you if your relative is a patient!), and to be able to share her thick collection of medical records with new providers if necessary. This saves her from having to keep track of it all and to sign releases with every new clinician or agency (like psychiatrist, social worker, Vocational Rehab, her SSI application, and so on).

We take care of her finances, too, so we explained that guardianship would let her Dad complete her tax forms and organize her other money-related chores–which she realizes she can’t do herself.

After obtaining her agreement, we hired an attorney to represent us in probate court. A guardian at litem visited our home and spoke to her at length in private. She comes across as entirely normal in person, so it was a darned good thing she’d already agreed, and stuck to her guns so to speak.

We also obtained a neuropsychological evaluation, which showed a number of deficiencies–things like executive function (making good decisions, planning a course of action, and carrying out plans), memory, and math. We took the report to court. By then she’d also met criteria for SSI (a HUGE struggle that took years) and Medicaid due to her disability–all points in our favor.

Also, by then we’d had her blood tested for a genetic disorder–VCFS (a chromosome 22q11.2 deletion). That came back positive, which proved her condition was permanent. This is one of the most prevalent genetic conditions, second only to Down Syndrome, yet it’s rarely tested for except in babies who have specific heart disorders and mental retardation–our daughter had neither symptoms but several others! About half the kids with VCFS grow up to develop a psychotic disorder… You might Google this condition and see if enough symptoms match to persuade a doc to order the test.

In court, the judge warned her that she’d lose her right to vote (in our state). I said we’d all fight to change that law. (The judge shook his head, but a few months later we did fight–and we won.) Our attorney had to use some careful language to avoid insulting her during the proceedings, so he said “idiot savant” with the French pronunciation (id-ee-oh savant) to get across the fact that she seems wise in many ways, yet she’s incapable of managing her own affairs.

We won. The attorney approached us once a year for three years to see if we wanted to end guardianship, since she was doing well, but we pointed out that her underlying condition hadn’t changed–without the medication she’d quickly relapse! He doesn’t ask that anymore.

We’re careful never to misuse guardianship, as this could make her choose to contest it herself. We don’t try to push her in any way; we just keep her hooked up to services and can communicate with her providers. Guardianship has worked very well for us for nearly 20 years now. In fact, it didn’t get lifted even after she married, since she prefers to have us managing her finances (her husband also has some disabilities).

Her sister has agreed to take over the guardianship when we become disabled or die.


#5

Thank you for sharing that. My son has some issues that seem similar to your daughter, so I’ll be reading up on that and asking our doctor about the test for the next time he gets a checkup.

Does anyone know if it’s something we will need to justify to the insurance company?


#6

Thanks for the advice. For now, our daughter is very reasonable, and doesn’t seem on the outside that she needs help, but she can’t function in public for more than an hour or two, and needs a lot of help managing her care. She has never been hospitalized, but I’m sure if we weren’t so heavily involved she would eventually end up there. I don’t foresee that she would do well on her own, so getting something like a guardianship in place would probably be best. I’ll have to look into what the legal requirements are in our state.


#7

I think getting guardianship at this point is the right thing to do, while she is able to understand what it involves and how it will help her and help you continue to provide the support you have been giving her.

One side-note - in SOME states, full legal guardianship takes away a person’s right to vote. This was brought up in the final guardianship hearing for me to gain guardianship of my son. Noone had told me of this aspect of guardianship. It bothered me, but it was clear that my son needed guardianship.

At this point, in a few years I might pursue adjusting my guardianship privileges and helping him re-establish his right to vote. Until this year I did not see it as a real problem as he spent so much time in psychosis and delusional thinking that voting was not really a right he could have exercised. He did not show any interest in the elections last year or any interest in voting, so it did not become an issue.


#8

You are thinking ahead, which is good . I would get a power of attorney - medical and financial just in case. I explained to my son, that I will discuss everything with him and will help him make decisions. He and I have a deal that we are working together to overcome this disease. When reminded, he also will sign HIPPA forms in the hospitals so that I can talk to the staff. Having all of this in place helps. Try and accomplish this when things are going well. You can explain it is necessary for when she turns 18.

Wishing you all the best!