Some of you may have read the post about Morgan becoming an adult and the process we went through to get him happily settled in a group home. In that post, I mentioned the process of getting a bed for him and said it was a whole separate story. This is one of those stories that’s funny today because it’s so absurd, but at the time, I thought I was going to tear my hair out!
The second week of July, we found a great place for Morgan to live. There were lots of steps, lots of meetings and lots of forms to complete before he could finally move in, but by far the most frustrating experience was trying to get a hospital bed for him that had rails and padding, Morgan has had seizures and a self-injurious behavior of hitting himself very hard in the face since he was three years old. Sometimes, the seizures happen at night and quite often, the hitting happens out of the blue in the middle of the night. When he was living at home, the solution we landed on was to have an adult sleep in the same bed with Morgan. Not a great solution because Morgan generally went to bed at 7:45 p.m., but the hitting sometimes happened so fast that the only way to keep Morgan safe was to have an adult right there. Now that he was moving into a group home, we had to find a new solution. The right one was a hospital bed with railings to keep Morgan from falling out of the bed in the event of a seizure, padding on the rails to protect him if he was having convulsions from the seizures, and someone awake in the room in a chair nearby in the event he woke up and started hitting himself.
We arranged for someone at the house to be with him in his room overnight when he moved in. Now “all” I had to do was get the bed. Here’s what happened . . . (If you’re a more visual person, skip to the end to see diagrams of this whole big knot!)
Day 1: Found the house we wanted Morgan to move into and learned I need to order a hospital bed. Our social worker recommended a few medical supply companies and told me I would need a doctor’s order to send to the supply company.
Day 2: Chose Handi Medical Supply. Went on their website to choose the bed and pads. Called them to place the order. They confirmed they needed a physician’s order.
Day 3: Contacted Morgan’s pediatrician’s office to request the order for the bed. The doctor wrote one right away.
Day 4: I faxed the doctor’s order to the Handi Medical and called to confirm the order. They said it takes a while for them to enter the faxes into the system. They would call me when it was in the system to confirm the order and get the delivery details.
Day 5: No word from Handi Medical.
Day 6: No word from Handi Medical. I called again. They confirmed they had received the order from the doctor and would call me if they need any additional information. They did not call.
Day 7 - 10: Multiple calls to Handi Medical. They tell me they need a “diagnosis”. I point out that the doctor’s order says “Diagnosis: seizure disorder; refractory with frequent seizures”. Apparently, that’s insufficient. They also need a questionnaire completed by the doctor and notes from Morgan’s medical charts showing the need for the bed. I have them fax the questionnaire to the pediatrician. I called the nurses at Morgan’s pediatrician’s office multiple times. They were incredibly patient with me and said they had responded to every request the Handi Medical made. They gave me copies of what they sent in, which included the order for the bed, notes from Morgan’s chart and a completed questionnaire.
Day 11: I call Handi Medical and confirm that they have received the order, the chart notes and the completed questionnaire. We start talking about the details for delivery. Whew! But we were not done. . .
Days 12 – 19: More calls to Handi Medical. They still need more information. Now they want “face-to-face” notes – which would mean taking Morgan in for an appointment with the doctor to “diagnose” a seizure condition that Morgan has had for 15 years!
Day 20: I have to find another way! It has been almost 3 weeks since we chose the house. Given the shortage of spots available in group homes, I am worried that they are going to give Morgan’s room to someone else. Plan B: maybe I can buy a hospital bed. I start researching online and find one, but it can’t be delivered for two weeks. Plan C: I call the house where Morgan is going to live and ask if they have a regular bed he could use and I would find a way to supply the rails and the pads. No. They don’t have any extra furniture. Plan D: maybe I need to buy a regular bed and then order railings and padding. I start working on that.
Day 21: I make one last attempt with Handi Medical. I go in person to the pediatrician’s office to ask them to put together the face-to-face notes from Morgan’s last in-person visit. They do so and fax those notes to Handi Medical.
Day 22: It is Friday morning. Morgan is supposed to move into his new house on Monday, but he can’t move in if he doesn’t have a bed! I call Handi Medical to confirm they got the last document they were requesting (the “face-to-face” notes). They did. However, I am told they will not approve a hospital bed because the order from Morgan’s doctor indicates a need for railings and padding, but not for a bed that can be raised and lowered. Didn’t they see that on the doctor’s order I faxed to them on DAY 4!!??
By this time, I’m desperate, so I ordered the rails and the padding from Handi Medical. I’ll just purchase a regular bed somewhere else. But they don’t deliver railings and padding. They send them through the mail, so it could take up to a week for them to arrive. We are now within a couple of days of when Morgan is supposed to move in, so I ask if I can come in person to pick these things up myself. They said yes, so I take off from work and drive over. When I get there, they have the rails, but they do not have the pads in stock. Unbelievable! It will be at least two weeks before they will have them in stock. I take the rails with me anyway. I might need them!
It is now Friday afternoon. I am on Plan D (or is it E by now?) -- buy a regular bed, borrow a truck so we can deliver it ourselves and request overnight delivery from Walmart for pads. Fortunately, before I did all that, I talked to the marvelous woman who runs the company that owns the house Morgan is moving into. She says this should not be so hard (yep, I agree with that!). She makes a call to Metro Medical, another medical supply company, and then asks me to fax the doctor’s order to them. Someone from Metro Medical called me within one minute after I sent the fax. They approved the order for the bed and promised to deliver it, along with rails and pads on Monday. WOW! They did in under an hour with a one-page doctor’s order what Handi Medical was never able to do over the course of three weeks with multiple pages of information from the doctor. YAY!
Metro Medical delivered the bed on Monday. Morgan moved in on Monday and his new bed was there when he arrived. Whew!
But we weren’t done yet . . .
Metro Medical was also out of stock on the pads. Sigh . . . We put big king-sized pillows along the rails for a while. About four weeks later, I got a call from Handi Medical saying that they had the pads in stock and asking if I could come and pick them up. I said they could just ship them to Morgan’s house and confirmed the address. About a week later, I got a call from Metro Medical asking if they could deliver the pads the next day. Because the ones from Handi Medical had not yet arrived at Morgan's house (surprise!), I said “sure.” They were not delivered. Two weeks later, Handi Medical called again and said the pads were still sitting in their front office waiting for me to pick them up. Again, I said please ship them to Morgan’s house. Eventually, a set of pads arrived at Morgan’s house. I don’t actually know from which company they came! And I have an extra set of bed railings (the ones I picked up in person from Handi Medical). I tried to return them because we didn’t need them, but they said that wasn’t necessary.
In the end, Morgan’s bed was delivered on time and he is safe and sound with both railings and pads. It took 27 emails, 35 phone calls, a few in-person visits, a few sleepless nights – and a box of donuts delivered to the nurses at the pediatrician’s office for all the work they did to try to help me.
To be fair, this was probably only partially due to medical insurance and medical assistance complexity and more due to Handi Medical. After everything settled, I looked at customer reviews on Yelp and that said it all. Lesson learned – check out your providers in a variety of ways! A couple of weeks after that, I saw a job posting for a new CEO at Handi Medical. I was actually tempted to apply because there is SO much room for improvement!
Below are two diagrams: a) how simple this process should have been and b) a shortened version of what actually happened. How can we Untangle the Knot so nobody else has to experience this frustration?