Susan's Blog

Sunday, March 31, 2013

Red Tape Rant

Nat had a strange rash today. I got the call from his caregiver, who also sent me photos of the rash via text. I immediately remembered the shingles Nat had a few years back. Shingles is an awful disease that is related to chicken pox. It hurts and hurts and it takes a while for it to clear up. I called my sister who is a pediatrician and sent her the photos. It was just a rash, she concluded. Thank God. Give Nat Benadryl, she told me.

The thing that bothers me is that when I called the house manager I was told that legally, the caregivers are not allowed to give Nat Benadryl without a doctor calling the pharmacy and signing off on it. What? I said, “Well, can I give it to him? I’m his legal guardian.” And his mother. So, of course I could do that, and even though Nat had just gone back to his home after spending the night here, they had to bring him back so that I could give him an antihistamine.

Makes sense, right? So riddle me this. What if Nat had — God forbid — been anaphylacting over something, and needed Benadryl? Would the staff have had to wait for all that red tape before helping him??  If so, then this is insane. The state purports to care about these guys like Nat, with this kind of overprotective shit, while still denying person after person funding and housing because the resources are too tight. The caregivers watch over Nat at night, give him meals, drive him around. We trust him in their cars, we trust him to their care. But there not allowed to administer Benadryl, for God’s sake?

Spare me this sanctimonious safeguarding, State of Massachusetts. Until you show me that you can take care of every vulnerable person — homeless children, impoverished elderly, destitute veterans, the disabled — then keep your sticky red tape off my kid.


I think that it’s probably to keep caregivers from trying to make medical diagnosis without a license. Your son’s people might be top notch, but that’s surely not the case statewide. I shudder to think of some of the places around here. But then, these “Mom and Pop” caregiver homes are probably not as devoted to holding to the guidelines.

— added by Janet Bowser on Sunday, March 31, 2013 at 9:07 pm

The red tape never ends… No matter how good the group home situation is, these frustrating situations must crop up all the time. Sorry you both had to go through this!

— added by kim mccafferty on Tuesday, April 2, 2013 at 11:42 am

They’re afraid of a lawsuit should something go wrong. Can Nat’s doctor write a standing order for him to be given Benedryl if he gets a rash?

— added by Leslie on Wednesday, April 3, 2013 at 8:15 am

First comment is correct. People have such little education is adult services as it is. Sometimes the amount of responsibility is they have is outrageous. You can have the doctor write an order for PRNs and then they are on hand as needed.

— added by Michele on Sunday, April 7, 2013 at 10:21 pm

As a nurse in a school setting, not knowing yet about the laws of the setting Nat is in, I suspect in the case of anaphylaxis, they would call 911. My son with autism is 12. I have yet to get to where you are to know what you do, yet I will and I will do what I can to facilitate changes.

— added by Stephanie on Monday, May 20, 2013 at 11:52 am

Does the living situation, home as it is set up, have any nursing coverage, access to some responsible nurse?

— added by Stephanie on Monday, May 20, 2013 at 11:59 am

Yes, there is always access to medical staff.

— added by Susan Senator on Monday, May 20, 2013 at 12:30 pm

I would inquire into the regulations which govern medication administration. In a school setting, a nurse can train, delegate and supervise to unlicensed staff to administer routine medications, but only a nurse (or doctor) can administer PRN medications because PRN requires an assessment and unlicensed people are not able to assess. I work at schools at McLean. So, I am also a bit aware of situations in which access to a nurse is limited – say 4 hours per week. And, the regs differ. A nurse pre pours a week’s worth of daily prescribed meds into pill boxes and the unlicensed staff give those meds, giving the “white round pill”, etc, but are relieved of the responsibility of knowing what the meds really are, etc. It falls back to the nurse having poured the meds. And, I do not know how they handle PRN’s, yet a would state it is only medical people that can assess. As a school nurse and as a mom of a boy on the spectrum I have found it enlightening to know about med administration regs and to know to even consider how a place is supposed or not supposed to provide such. A parent wants unlicensed people to stay in their roles and follow regs. Service provider places, in meeting demands of many needs and working within budget can present ways it is challenging for the care providers to provide safe care.

— added by Stephanie on Sunday, May 26, 2013 at 3:40 am

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