BAYADA DPN client 8-year-old Natalie and her mother Karen recently hosted newly elected state Senator Laura Sturgeon (D-Hockessin) in their home. After hearing that Senator Sturgeon was a school teacher with 23 years of experience whose campaign trail promises included advocating for children, Karen knew that a home visit would be an ideal opportunity to educate the new senator on home care and how it enables so many Delaware children to grow up safely at home.
The visited started with a tour of Natalie’s bedroom, where Karen explained each piece of specialty equipment to the senator—from the hospital bed Natalie sleeps in, to her feeding pump, pulse/ox machine, oxygen tank and suction machine, as well as Natalie’s medications and their monthly stock of supplies. Senator Sturgeon was taken aback—she didn’t realize how much a family had to learn when caring for a medically-fragile child.
Afterwards, Natalie, Karen, and the senator then gathered at the kitchen table to discuss what legislative supports families like theirs need to be able to stay together at home. Karen was ready with the answers: Support higher reimbursement rates for in-home skilled nursing services and direct support professionals. She told Senator Sturgeon how happy they are with the care they have—a RN accompanies Natalie to school and to summer camp—but was honest about the number of nurses who are leaving home care to work for higher wages in hospitals. Natalie’s nurses have quite literally saved her life and Karen knows the nurses she trusts with Natalie’s care may have to do so again in the future. Children like Natalie thrive better in a stable environment with reliable, consistent nurses—and a situation where there is a revolving door of nurses can put her in a dangerous situation.
“Natalie can’t attend school if she doesn’t have a nurse with her. School nurses are busy already with managing students with asthma, diabetes, or severe food allergies, and ensuring Natalie’s medication schedule is met every day would be too much without the support of a stable and dedicated RN,” said Karen.
Senator Sturgeon became one of the best Champions for Home Care in the legislature this year. Having no personal or previous experience with medically-fragile children, the time she spent with Natalie’s family made a huge impression on her. Through the last weeks of session, she was one of the most vocal proponents of increasing skilled nursing rates to ensure that we can continue to recruit and retain the highest quality nurses to take care of people like Natalie.
“I know how incredibly time-consuming and overwhelming it can be to raise a medically-complex child. I feel that it’s our duty as parents to get involved in advocacy on behalf of our own children, and on behalf of the many others that don’t have a voice,” said Karen. “I am deeply touched that the hour Senator Sturgeon spent at our house made such an impression on her. I hope that parents across the country get involved in advocacy. It’s critical that we unify our voices in support of the care that helps keep children like Natalie thriving at home.”
In talking about this experience, Karen recommends that other families:
- Talk with their elected officials calmly and respectfully.
- Present the facts, staying on message but being honest about how much you do for your child.
- Be sure to remind your senator or representative that your child represents the state’s most vulnerable population.
- Remember that party status shouldn’t matter because elected officials are public servants. Even if you disagree with them on some things, they’re open to learning more about medically-fragile children, so thank them for that and for their help.
- Be direct and tell them which bills you want them to support or oppose.
- Always thank them for their service to your state.
BAYADA is encouraging more employees to involve clients and families in advocacy this summer by coordinating home visits and inviting local legislators to clients’ homes. We’ve seen time and again how these visits, usually no more than an hour in length, have changed legislators into advocates and advocates into Champions for Home Care. As we continue to press for higher reimbursement rates, we need more of our legislators to understand these issues personally and to get to know their constituents who rely on BAYADA’s care to live safely at home.
If you want more information on how to host a home visit, contact Mike at [email protected] or reach out to your GAO Director.