California Day Care Center Receives State Exemption to Operate Insulin
Pump
by Laurie Wann, Brian's mom
lwann@ncen.org
Brian Swinging
Our 4-year-old son, Brian was diagnosed with diabetes on December 1, 1998
just before his 3rd
birthday. In the days following his diagnosis, I remember thinking about all
the permanent
changes diabetes would mean in his little life, among them, that he wouldn't
be going back to
Never Neverland, the day care center that he adored. Kristy Lee, owner of
Never Neverland, and
her mom/employee Sharon Campbell, are incredible, caring women, but I just
didn't feel I could
ask them to undertake the intensive education or conduct the constant blood
tests that diabetes
requires. I couldn't have been more wrong.
During the 4 days we were in the hospital with Brian, I spent a lot of time on the phone sharing the devastating news with friends and family. One of the first phone calls I made was to Kristy telling her Brian wouldn't be coming to preschool on Monday, and probably never would again. I recall Kristy saying, "of course Brian will come back, we want him to, and we'll do whatever it takes to make sure he's happy and safe." Tears streaming down my face, I agreed with her that his life needed to be as "normal" as possible - and that included his usual Monday mornings at Never Neverland.
In January 1999, Brian returned to day care. It was relatively simple to adjust his schedule, waking Brian a little earlier for his injection and breakfast. The earlier time allowed the combination of H, R and U to accommodate the 9:00AM snack and the 11:30 lunch served to all the Never Neverland children. Kristy and Sharon quickly mastered the arts of finger-poking, testing and counting carbohydrates. They learned how to treat low blood sugars and called me when Brian was high so I could come administer an additional injection if necessary. I picked Brian up from the facility at 12:30 immediately after the children ate lunch, and gave him his lunchtime shot of Humalog.
In October 1999, Kristy and Sharon said they wanted to learn to give Brian injections. They knew he was never really ready to come home with me at 12:30, and they also wanted to give me a little break from being his full-time caregiver. I was overcome by their generosity, and eagerly agreed to show them how to administer shots. Much to our mutual disappointment, I learned within a matter of days that privately licensed day cares in California legally couldn't give insulin injections.
I considered challenging the law, but we were planning on putting Brian on an insulin pump in the near future. Since the pump basically required pushing a few buttons, I assumed this would be acceptable to the State licensors. I was wrong again. Community Care Licensing told me in no uncertain terms that privately licensed day care providers cannot administer insulin in any fashion - and if Never Neverland did so - they would lose their license to operate. Since Brian would have to bolused every time he ate a meal or a snack - and it wasn't feasible to visit the daycare facility several times a day - it seemed we were faced with making a choice between an insulin pump or preschool for our son.
Brian was taking as many as 5 shots per day at that point, complete with sliding scales and 10- 12 blood tests around the clock. However, in spite of our best efforts, Brian's blood sugar levels remained erratic. Consequently, we decided the priority was to put him on an insulin pump in April 2000.
At the same time, we believed with all our hearts that it was in Brian's best interests to play and learn in the personal home environment at Never Neverland under their loving, nurturing, and knowledgeable supervision. He needed the on-going social interaction with his peers, and perhaps most of all, he needed to experience as much consistency and normalcy in his life as possible. With Kristy and Sharon's encouragement and commitment to learn about pumping, I registered Brian for 2 full days a week beginning in September 2000, and proceeded to look for a solution.
Shortly thereafter a chance conversation with a social worker lead me to Chris Palamountain, a wonderful attorney at the Child Care Law Center (CCLC) in San Francisco. The CCLC, a national nonprofit legal services organization founded in 1978, focuses exclusively on the complex legal issues surrounding the establishment and provision of childcare. After our initial phone conversation, Chris agreed to undertake an investigation on Brian's behalf of Community Care Licensing's denial. We both hoped litigation would not be necessary.
To get Chris up to speed on the issues involved, I faxed her over a dozen pages including everything from a Diabetes Fact Sheet to information on the DCCT. Succeeding faxes included reams of information on insulin pumps and protocols. After familiarizing herself with the material, Chris contacted the State resulting in a meeting between Kristy, the local Licensing Program Agent for the California Department of Social Services, and myself.
Considerable more information was requested, including letters from our endocrinologist and primary care physician, a formal request for a waiver from Kristy, a detailed training plan, emergency protocols, and pump manufacturer literature and video tapes.
An answer was slow in coming, but Chris continued to apply pressure and the State ultimately informed her on August 3, 2000 that they had approved an exemption. When she called me that night and shared the good news, I began to shed tears that finally stemmed from joy instead of pain and frustration. The 11-month process was over; Brian was returning to Never Neverland.
Dealing with diabetes is often a struggle, but this is one instance where I feel we have triumphed over the disease. I am thankful to have wonderful people in my life like Kristy, Sharon and Chris, without whom Brian might not have had the opportunity to continue attending daycare. Their unfailing support and combined efforts helped turn the tables in our favor.
While I am thrilled with the outcome of all our efforts, I feel an extraordinary amount of information was required to justify our right to obtain an early education for Brian. I am hopeful this one small step may benefit other young pumpers and their families, and help educate people about the complexities of diabetes.
If anyone is in a similar situation and
would like more
information, feel free to e-mail me,
Laurie Wann lwann@ncen.org,
or give me a call at
Chris Palamountain at the Child Care Law Center has also expressed her interest in pursuing pumps in daycare situations; she can be contacted at cpalamountain@childcarelaw.org