New group advocates for medically complex population

Natalie, 10, hasn’t been able to attend school on Fridays for almost a year because she has no nurse to accompany her to watch for potential seizures and respiratory attacks.

Alyssa, 9, hasn’t had reliable private-duty nursing, leading to uncovered shifts and her 16-year-old sister having to resuscitate her.

Joseph, 9, is immunodeficient and has been frequently homebound to keep him medically safe. Lack of covered nursing shifts has led to his mother losing employment, losing their home and ultimately declaring bankruptcy in order to provide for her family.

These stories are just a few of why an advocacy group called CHANGE for Homecare was recently formed by caregivers for individuals with medical complexities in Delaware. CHANGE stands for Caregivers, Homecare, Advocacy, Nursing, Guidance, Education.

In Delaware, there are more than 300 pediatric individuals who are considered medically complex and are prescribed private-duty nursing by their physicians. But many have gone days, weeks or months at a time without a nurse, primarily because many nurses leave homecare to work for hospitals or residential facilities since the wages are higher and they can receive a benefits package.

“The bottom line is that private-duty home nurses simply cannot compete with hospitals and long-term care facilities,” said Kateri Morton, lead advocate for CHANGE. “Our children are the ones who suffer from the PDN [private duty nursing] shortage – from all vantage points – medical, emotional and educational.”

The mission of CHANGE is to identify, initiate and implement necessary changes to improve the quality of home care provided to individuals with complex medical conditions by way of advocacy, partnerships and legislation processes with a strong focus on private-duty nursing and care-attendant programs.

Morton said the group’s first order of business is to appeal to the Delaware Legislature’s Joint Finance Committee to ask members to increase the Medicaid reimbursement rate for private-duty nursing agencies. “We want them to raise the rate so that home-care nurses can be compensated for the skills they provide to the medically complex kids and adults at a competitive rate when compared to other employment opportunities. The rate hasn’t been increased since 2006 and is approximately 30 percent below the national average. Not many line items in the state’s budget have gone 15 years without some type of increase. This is long overdue,” said Morton.

“COVID-19 has exacerbated the issue. Not being able to stay competitive means access to care issues for clients, leading to a lower quality of life for the affected client and families. Rate increases are critical to ensure that nurses are available to fill the shifts,” she said.

“When my son Joe-Joe doesn’t have nursing, he can’t attend school and I have to call out of work. My responsibilities as a parent are to provide food, shelter, clothing, access to medical care and access to education, and lots of love! When he doesn’t receive the nursing care prescribed and guaranteed to him under Federal Disability Medicaid Laws, I am unable to fulfill my parental responsibilities,” said Morton. “There are too many of us – moms, dads, siblings, and grandparents – who are left no choice but to be our child’s nurse when all we want is to be our child’s family. We don’t even have nursing degrees!

“Our most vulnerable population is being overlooked, and we must take action now in order for them to receive the care they so desperately need,” said Morton.

For more information, go to changeforhomecare.com.