I have an LFA cousin who's living in an institution.

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My father told me about her. He doesn't know much about her, only that she's in her twenties and has been living there most of her life. She's about two hours away from where I am. I'm not angry at her parents, who I don't really to know very well to begin with, and I don't want anyone to think I am for wishing to know her. I feel that, in the very least, I could send her a care package with books or puzzles or something. I just wonder what her life is like, if anyone visits her. What her resources are. I want to know more about her. No matter how disabled she supposedly is, she is a part of my family, and she deserves an chance to know us too.

Any suggestions on this situation? Or how I could get in touch with her, or what I could possibly send her?

Why send anything ...she's probably well taken care of where she is. Why don't you go and visit her. See if you want to get to know her.
I bet she might just enjoy your company. That is just my opinion.

Your compassion is commendable, but I agree, you should, if at all possible visit her to determine what sorts of things she might be able to use or have any interest in.

And keep in mind that depending on her level of functioning, you may have to visit several times to let her get acquainted with you before you can expect much response. A stranger showing up unexpectedly and saying "Hi - you don't know me, but I'm your cousin" might be somewhat unsettling for her - certainly a big alteration in her routine day. So try to imagine how that would make you feel and magnify it by several times.

I work at an institution for the developmentally disabled. You would need permission from her guardian first, and then they would contact her case manager/doctors in order to set up a time and place for you to visit. At least that is how it works here. In almost all cases, they try to work around your schedule as much as possible. And unless she is having a difficult time, they are very encouraging for any visitation with family. So much of their time is spent without that, in our institution we greatly appreciate any amount of time that their family can spend with our patients. I agree with the others that you should meet her first and she and her staff can give you an idea of what her likes and dislikes are. I hope it works out well for both of you, all of our autistic patients are sweethearts, and I would be their friend if I could, but can't because I have to take care of them in a professional manner.

But if she is having a difficult time, to then "temporarily" deny family? That seems like a type of punishment and/or doghousing and/or isolation.

I'm not saying it would always be wrong to do this, but I hope it's not a knee-jerk reaction of the institution.

And in general, I would say that for a person having a difficult time, whether in a institution or not, the addition of free positives to their life, and esp. free social positives, is a good thing.

That sounds like a good start. I would almost say a smaller care package every couple of months beats a bigger one only once a year.

Generallly, you want to ping-pong it back and forth in a communicative process. So, she might appreciate the care packages very much, be disappointed if they stop coming, but just not be much of a letter writer. Some people just aren't letter writers.

I also like Descartes30's suggestion, if you can get in contact with a staff member who's familiar with her and also friendly and open (or just in an open enough mood to take a little time to speak with you), that person might be able to give you some good suggestions.

You have a limited imagination for what constitutes a difficult time. Believe it or not people with disabilities do often act out and violently. And also there are situations where they are making a situation dangerous for themselves or others and they need to have limits and have them enforced. When the guardian is cooperating with the doctors on site then there may be situations where they are restricted from activities or going out in the public or seeing family members. But it is for their psychological benefit in the long run and they do get a lot better for it. What is the good of taking your autistic sister out for a drive if she thinks it's a good idea to fling open the car door in the middle of traffic? This is a rather common situation, and just one example. We try to give these people a better quality of life and as much happiness as possible, and that includes helping them survive to their next birthday.

Yeah, but couldn't visits be modified? Even if you had to stay in their room with them being watched one-on-one by a staff member, you could still visit. I could totally see if it would be unsafe to take them out, or unsafe to leave them alone; but I can only see refusing a visitor in the case of someone who's in such overload that the slightest unexpected event or deviation from routine would cause a panic.

Anyway, yeah, I think it's a good idea to get to know your cousin. I can't know what it's like to be institutionalized long-term, but even after ten days in a hospital ward, I felt totally alone--and that's saying something for an extreme introvert like me. It might take a while. It really depends on what your cousin's personality is, what she likes, whether you have common interests, whether you hit it off. You're definitely going to have to give them warning. All you know is that she's autistic; but that means she's likely to need plenty of warning. Just dropping in would be an unexpected event and it's more likely than not that it'd be jarring to her. I know it would do that to me, if a cousin I'd never met dropped in on me.

When possible, we modify the visits if there is a possibility of harm to the patient or their visitors. When taking away visits due to behavior, it is always the last thing we take away. We do actually care about the people we take care of, otherwise we wouldn't do it. We are a non-profit organization, and not for tax breaks. But most of our patients are severely disabled and as such they have a very child like mentality. We will not exact any corporal punishment, but we still have to discipline them to get them to behave appropriately sometimes. The only way we do this is by taking away activities that they look forward to. Imagine a 40 year old man that is 300 pounds but has the mentality of a 3 year old. If they act out severely enough, they could really hurt themselves or the other patients. So we do what we can to ensure that they don't want to act out. The only other 2 solutions besides taking away outings and such is to give them back to their guardians (unless they were given to us by the court and we are their guardians) which is always a severe drop of in their quality of care if their guardians will even accept them back, or we can send them to the state hospital. If they have to leave our care for the state, it's to a very institutional atmosphere, basically your standard padded cells with little to no outside contact. We even have a patient that before he was with us, at the state, had spent 90% of his life strapped down because he was so uncontrollable. So, it may sound cruel to take away simple things, but it is only in their best interest, never because we are giving up on helping them. You will hardly ever hear any of our patients say that what we did was unfair, we always try to do what's best for them. And if they lose a reinforcer or outing, they know that they earned that, and they just try to do better the next time, and we try to help them with that. Our patients actually seem to all love it here, and there are a lot of others who their guardians wish that their wards qualified to be with us. I tried to fill in the blanks a little, but I dislike being too specific about my job. I am a total stickler when it comes to patient confidentiality, they deserve that, so I tend to enforce it a lot more than anyone else I know does.

I think that you should do some supervised visits with her. Before the visits, maybe you can say hello to her on the phone, so that she gets used to your voice. Baby steps.

She may not want to talk on the phone...

and/or medium steps.

And be open to the feedback from each step, including what you find yourself looking forward to next (whether a care package or phone call or visit).

Ask the people taking care of her first if she's up to having visits, and if you do want to send her a gift, ask them what kind of things she likes.

It's possible to learn about people and places, before you visit.

But, besides just satisfying your curiosity, you might be obliging yourself. I think you should acknowledge that.

The original post is from 2010. The person who posted it, hasn't posted anything in here in over 7 years. She's not around here any longer to read your advice.

Duly noted.

Distracted by grapefruit, and answering hypothetically.