The Portland move

Recently Alex was moved to a home in Portland so he could be closer to his primary medical care. He’s back in his old home now even though the home and the house manager seemed like a wonderful fit. Why? Because the agency running the home pulled a ridiculous bait-and-switch on us.

In June, we saw the home and were only concerned about one issue: the front door is always unlocked. It has an alarm, but all that does is let people know after the fact that Alex is in the process of leaving. We asked for some kind of lock to be added in order to keep Alex safe since he will sometimes behave very unpredictably. We were told getting that changed shouldn’t be a problem, given Alex’s situation.

We also mentioned that to move anywhere, Alex really needed to have 2:1 staffing because when he gets into his behaviors, they can be extremely intense. There is plenty of documentation that supports this at his existing home. Even during a good month, he’ll have plenty of reports about needing to be restrained to stop from hurting himself. We were told that with Alex’s situation, it seemed likely they could get the staffing approved.

His move-in date was scheduled for Saturday, August 6th. The prior Monday (the first of the month), we actually sat down to fill in all the necessary paperwork. Half way through the process, we were informed that the staffing was only going to be 1:1 even with Alex’s behaviors. We were none too happy with this, but agreed the location and house manager were so good it was at least worth a try. We asked about the door lock situation, and were told they still didn’t have an answer, but there was no reason to believe they couldn’t get a lock.

Friday the 5th around 3:30pm, we got a call telling us the lock was not approved.

We had less than 24 hours’ notice before Alex was scheduled to be moved.

We were able to get his current home to agree to take him back in the event that things didn’t work out, and with the help of the residential specialist were able to get the situation set up as a more “trial” type of move so we could see if the house would somehow work even without these two very important things being dealt with.

So we went up on Saturday to help Alex settle in, and were concerned immediately. The 1:1 staffing was just not anywhere near enough – if we hadn’t been there, I’m not sure how they would have kept him safe. We visited twice on Saturday and then returned Sunday morning. Thinking we would just need to get used to the transition, we were shocked to find that the staff can disable the front-door alarm. We walked into the home and the alarm was off, which just blew us away. When we found that the house manager wasn’t there, it dawned on us that this means a staff member can just choose not to have an alarm if they get tired of the noise or something.

Alex was back in his old home by the following Wednesday, and while we hate the location, we are much happier knowing he’s not going to just disappear one day. The agency involved is very unhappy with us, and I get it: they had to spend a lot of money and secure state funding for Alex to move in. But if they really wanted it to work, they should have been honest with us from the beginning. Waiting until the last minute to tell us they couldn’t fulfill either of our basic concerns was their choice, not ours.