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We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).
I guess today I get to toot my own horn.
At the time Annelies was diagnosed (March 2008), I was a career federal service employee. When I was at work the girls were elsewhere on post in School Age Services (after school care). While she was in the hospital we learned that before her return to their care, we had to have something called the Special Needs Accommodation Process (SNAP). It was our first realization that our child was now considered “Special Needs.”
Long story short, we learned that outside of helping her to check her blood sugar and providing the nutritional information for meals and snacks, their hands were tied to do anything else, especially dosing insulin. This was the supporting regulation:
4–32. Administering medication and Performing Caregiving Health Practices
On occasion, CDS personnel may be required to perform health related practices as a reasonable accommodation for children with disabilities (special needs), pursuant to the Rehabilitation Act of 1973, as amended. These specific caregiving health practices are usually outlined in the child’s Individual Development Plan (IDP) or the Individual Family Service Plan (IFSP). Such practices may include, but are not limited to, administering oral medications in addition to those discussed in paragraph 4–32c below, hand held or powered nebulizers, clean intermittent catherization of the bladder, gastrostomy tube feedings, or assistance with self–care for medical conditions including glucose monitoring for diabetes. However, CDS staff and Family Child Care providers will not perform functions that require extensive medical knowledge (e.g., determining the dosage or frequency of a prescribed medication); are considered medical intervention therapy (e.g., those not typically taught to parents by physical, occupational, speech therapists or special educators as part of a home program); or if improperly performed, have a high medical risk (e.g., injection of insulin).
They couldn’t dose insulin, not even Glucagon.
During the school year, this really wasn’t an issue, in the beginning she had an uncovered snack after school. But during the summer after school turns into all day care in a day camp format where she would be eating lunch there, she needed insulin but they couldn’t give it to her. I had to alter my lunch (half) hour to travel to the center and dose her insulin. A little inconvenient but do able. Where it did become an issue is that they had a weekly field trip with packed lunches sometimes as far an hour away. For her to able to attend, I would have to take off work and go with them. Unfortunately it wasn’t an option, there is no way my supervisor would have agreed to it, even if I had the leave balance. She would have to stay behind and it wasn’t fair.
This was before I found a support board and before I found the DOC. So I turned to the Military Yahoo Group, I asked them if anyone had run into this and what do they know. The responses were along the lines of ‘it is just the way it is’ and ‘you can’t take on the Army.’
And I got mad and I said to myself ‘watch me.’
And so I submitted a letter up through the chain of command and in my 24 page request (3 page letter and 21 supporting documents) I asked for 2 things:
- An exception to policy for Glucagon Administration and self-medication with assistance, so that she could fully participate safely in the program.
- Review of the current regulations, policies and practices in place.
And I sent it on its way 1 June. And we waited. And waited. And she missed out on the fun field trips. And it broke my heart.
One day in late October, we got this in response
And I was Snoopy Dancing! I won! Well, I sort of won.
There was now a policy in place but staff still couldn’t:
- Count carbs, but I could get the menus and have it figured out for them to measure.
- Give insulin or Glucagon. BUT they could supervise as she self-medicated.
By this time, she was using an insulin pump and the response we did get back was enough to meet our needs, especially to ensure that she would no longer be left behind on field trip days.
I wasn’t ok with the no Glucagon thing. It made me angry that if she needed it, the staff had to stand there and watch while an ambulance was called. It made the staff upset that they were being told that they weren’t allowed to intervene in an emergency for a child they had grown to love. So a teleconference was set up with faceless people in charge in various departments of the Army. I’ll spare you the details, but it got ugly. I tried to be ‘how can we fix this’ and ‘how can we get this changed’ but all I was met with ‘it’s policy’ and ‘do you realize there are many other lifesaving interventions we can’t do.’ That last one was when I flipped. I didn’t care about the others, I told them, and they were not my battle. In all honesty, all I remember is that I was seeing red and it was beyond ugly.
But I wasn’t done yet. And the staff of her after school care and the other personnel on post said ‘keep fighting’ ‘you are right’ ‘be a catalyst for change.’ Their hands were tied by policy but they thought it was wrong and wanted it changed too.
During the time I was awaiting reply for my exception to policy request, I had contacted the Legal Advocacy Department of the American Diabetes Association. They put me in touch with a Disability Rights lawyer. I chatted with her and she thought we had a strong case if we I (because my active duty soldier husband could not sue his employer) decided to sue the Department of the Army on our daughter’s behalf. She would be happy to represent us and give us discounted rates. I still had one more avenue I wanted to exhaust but could I please keep the option open? Of course, she said.
So I submitted an issue to be reviewed at the next Army Family Action Plan (AFAP) conference
Issue Title: Glucagon Administration for Diabetic Youth in CYSS Care
- Current Army policy prohibits CYSS staff from administering Glucagon in an emergency; a first responder must be called to administer for a severe episode of hypoglycemia in diabetic children within their care.
- Glucagon is a life-saving, injectable hormone (which is a naturally made in the pancreas) that raises blood glucose levels by stimulating the liver to release stored glucose; it is not harmful nor can an overdose occur. Glucagon is required when other treatments cannot be used due to unconsciousness and/or seizures.
- The prohibition of Glucagon administration affects all Diabetic Youth within CYSS care. A severe hypoglycemic event is a situation can turn dangerous quickly; resulting in coma, brain damage or death.
- In spite of careful attention with blood glucose monitoring, the infrequent need for glucagon could occur. Those who are responsible for a child within a CYSS setting must be able to provide this needed service.
- Army policy should be revised to allow the administration of Glucagon in an emergency by CYSS staff.
- CYSS staff should be trained at the same level as the training for Epipen (an emergency intervention allowed for allergic reactions). At least one staff person trained to administer the glucagon must be available any time a child requiring this emergency intervention is in care, including during activities away from the facility.
I had volunteered the previous year and I loved being a part of the process. It was awesome. So I had volunteered and was chosen the following year also. The size of the group is dependent of the number of issues that have been submitted. Normally the submitter of an issue is not part of the reviewing group. Lucky for me, there were few issues submitted this year, but I told myself that I needed to detach myself and let the process work.
They came to my issue and I tried to bite my tongue. I was too emotionally connected, I reminded myself. But they didn’t understand. I didn’t expect them too. I looked to the staff in charge and she nodded her head in permission. I reached into my purse, pulled out a Glucagon kit and revealed myself as the submitter of the issue. I explained the history of what I had done and why this was so important. They passed around the kit. Someone looked at me and asked ‘so she could die while waiting for an ambulance to arrive.’ Yes I confirmed. They asked for the Subject Matter Expert (SME), who was the director of CYSS (and one of my biggest cheerleaders) and they questioned her. And they decided that this was important to them too and it was elevated to the next level.
I had done well keeping the tears at bay during it all but I failed when it came time for the Commander’s Brief. The Post Commander attends at the end of the conference to be briefed on the issues. I didn’t say a word, I didn’t have to the group briefed him and did so well at it. In all honesty, if I had wanted to say something, I was too choked up with emotions to even try. After the brief, the Post Commander said that he remembered when my exception to policy had come across his desk. And that he thought it was important then and it is still important now. And he signed off on it moving up to the next level.
At the U.S. Army Reserve Command (USARC) level my issue was not prioritized as a top issue to move up to the Department of Army level. But it reached someone’s attention, because
Glucagon Injection for Diabetic Youth in Child, Youth, and School (CYS) Services Care (2010-04): This issue was sent to U.S. Army Reserve Command (USARC) level for the June 2010 AFAP Conference. The issue was not prioritized as a top issue to move forward to Department of the Army and was returned to Fort McCoy. Medical Command now has recommended that glucagon be permissible to administer in CYS Services, providing that the appropriate training is completed and documented. The issue was deemed complete.
This is my proud accomplishment. I was told you can’t take on the Army, but I did and I consider this a win.