Autistic daughter bounced from hospital to hospital

[Karen B]

This all started on May 19 with a visit to a local ER....my daughter who is 28 and is autistic with Obsessive Compulsive Disorder (OCD) came out from a nap with 2 swollen eyes, she looked like a prize fighter. I asked if she had fallen out of bed she said no..the hospital gave her gel to put in eyes and sent her home (first mistake) and she would not let us put it in her eyes....she kept rubbing and rubbing until it got very bad...her whole face was swollen and getting discolored....went back to second hospital and they finally admitted her and she was in ICU on an IV for over 2 weeks and then they admitted her to the hospital floor. She struggled to the point they had to restrain her to keep in the IV and do blood work. She had a very bad bacterial infection and because of the struggles got cuts under each eye and we were afraid...that is her eyesight after all. This hospital kept insisting they were only a short term hospital and tried to get her out. They sent her home on June 22 and within 15 minutes she had opened the wounds under her eyes and we sent her back to the hospital and went to the ER and they gave us a hard time about readmitting her...they kept her overnight on a psyche unit and would not let my husband in to see her....they sent her to a horrible place where we did not want her to go that has been in the news with deaths, abuse etc and thank God they refused her and said that they were a psychiatric hospital, not a medical facility and she needed medical attention because they sent her on a 3 hour ambulance ride ALONE and she reopened the wounds again. After much hesitation and a compassionate psychiatrist there they admitted her but this time was putting restrictions on how long anyone could visit. DDS found a hospital they said could work with her special needs and they sent her there and they sent her back after an overnight stay.....they said the hospital she came from okayed it which was a lie.....she spent 3 days in the ER because they did not want to admit her and I sent many emails and called to doctors, psychiatrists, lawyers, news media....finally she was admitted over the weekend and now tomorrow they are sending her to a center that cares for the severely disabled and the reason they could get her in there is because she was sectioned....that other hospital that she stayed in overnight said she was trying to hurt herself. I am sure she just wanted out. It was a strange place with not a person she knew and no family were allowed. This new place is supposed to be compassionate from what I hear but now I am not so trusting because they said that before. I am concerned because someone I know went there and they did a medication wash on her and she was there 6 months. My daughter has already been gone over 2 months and another 6 months I could not stand and I don't think she could either.....my daughter is not violent to anyone....she can have self injurious behavior but would never hurt anyone else and never has. She is not psychotic....she is autistic and the Obsessive Compulsive Disorder (OCD) is actually worse than the autism. She is smart as a whip....uses the computer, does beautiful drawings and has a fantastic memory......can anyone offer me any hope?

 

[susiestar]

Are you on her HIPPA forms? What are all these limits on visitation? I live in a small town and even our podunk hospital has all day visiting and has since the 1980s when I was a candy striper. The big hospitals all do also. I don't even know of a hospital in my state that has less than 9 am to 8 pm visiting hours except for psychiatric hospitals and those are for different reasons.

Why would someone autistic go to a psychiatric hospital? They just need to be talked through the treatment or to have the treatment modified to something they can tolerate. Usually it can be modified if you are creative - drops rather than ointment, using whatever calms the patient to get them to tolerate the treatment, etc... Autistic people have rights just like anyone else, and the right to not have treatment forced on them.

Get your daughter a lawyer to protect her rights. They cannot force a medication wash if her private doctor is okay with her medications and she does not want one and you are okay with trying her treatment at home. Have you tried to get disability for her? I don't know if adults can get waivers for at home nursing care, but that might be what you need to keep her out of a hospital. It sounds like a whole bunch of uneducated idiots trying to force her to do something she doesn't understand in a way that is easy for them. Her brain processes things differently and they have to go at HER speed, not theirs even though it is a PITA to them. That is why you need to try to be with her if you can for visiting hours to make sure they are not mistreating her. I would not have my kid/adult kid in a psychiatric hospital for medical treatment under any circumstances.

I would also sue the hospitals that bounced her out over and over without treating her if you can. They did not meet her needs or treat her and it simply is not acceptable, nor is allowing you to be with her. I am pretty sure if she wants you with her, you can be, that is HER right and not their right. In fact, most hospitals allow you to have someone with you overnight. I had what they originally thought was a stroke and they let my mother stay in the room with me all weekend. Visiting hours were posted but no one ever said a word to her. Another time I was in for a week with an infection in a tiny hospital and my mom stayed for most of the week. Including nights. It was not a problem and no one brought up leaving. They brought her meals. Never asked if she wanted one, just said here. I was married with my own kids, so I was NOT a kid at the time (mostly I wanted my mom to leave, but she was worried, so I wasn't going to tell her to leave.)

Make very nice to the nurses. Even when you want to stab them in the eye with a rusty nail. They have a ton more power than you would think and can get you all sorts of info that can help if you end up needing to sue. FYI, if you ever have surgery, always get the surgical notes as well as the regular medical records because they are different and they hide the surgical notes unless you ask. Just in case your daughter's eyes get that bad. I hope they do not.

 

[Karen B]

Thank you Susie.....this has been hell for me....believe me I have looked for help from all sources...and tried to get a lawyer and they all pass the buck. We had some wonderful people working with her so far....I don't know why the limits on visitation...well it was my husband...if they had to wash her or toilet her or if she took her clothes off...he would have to leave the room and if she was having a bad day he would have to wait outside..one day her was out there all day. Many times he visited and she was sedated. Yes she is on disability....it is my screwed up state I guess...it depends on how the doctor admits her...if they say she is medically cleared to leave...then the insurance will no longer pay and then they can send her to a specialized hospital. She does need to be in until this thing can heal...she does not understand that she can not pick and reopen wounds...she is a picker to begin with and can not tolerate anything on her skin. I am also disabled and can not be there...I am on a walker and can not go up the stairs so I have to hire a chair lift $100 each time I leave the house...the whole thing stinks and has done a number on us all. I just want her to heal and come home. I would not mind them taking a "look" at her medications and trying to cut her down but to have a wash done...I don't want her away for another 6 months...it has already been over 2....you can understand how depressed and anxious she is.

 

[BusynMember]

I wish i could help. I have no experience with this type of autism. But I have an autistic son. Autistic people are in my opinion very special and have a certain extra perception. I wish both of you the very best. Just keep making sure that your daughter seems to be getting good care.

There are lawyers who specialize in disability rights. Have you talked to any of them?

 

[pigless in VA]

Welcome, Karen. I recommend that you use a less identifying name and remove your photo. This board is very busy, and it safer for you to be more anonymous. I agree that your daughter needs an attorney to help her. I think I would keep looking for one. I am so sorry that your family is having such an ordeal. Your daughter deserves better care than she has been receiving.