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Kateri (Katie) Morton, Dover, DE – Mother of 8-year-old Joey Scruggs
*Featured in WMDT broadcast 12/3/20

Kateri Morton is a single mom with two sons: Thomas (7 y/o) and Joey (8 y/o). After a high-risk pregnancy, Joey was diagnosed with Down Syndrome at birth. In his first few months of life, he underwent heart surgery to correct a heart defect, suffered a neurological event that has led to continued mobility issues, and—due to his medical complexities and immuno-compromised status—has contracted countless viruses and infections that have landed him in the hospital dozens of times.

Following intense advocacy by Kateri, Joey—now eight years old—has reached a steady point in which he has not made an emergency hospitalization in a record year-and-a-half. But Katie still struggles to fight for Joey’s home care, which remains shaky, in large part to Delaware’s limited funding for the private duty nursing (PDN) program, and the state’s unwillingness to ensure that home care programs are easily accessible for the many medically-fragile families that depend on it.

Joey is homebound and must remain at home to stay safe, healthy, and out of the hospital—which is especially important now during a time in which COVID has run rampant in facility settings. To minimize his exposure, it is important that Kateri be able to access consistent, reliable care. But this has not been a reality. Kateri has given up a lucrative career in order to be able to keep Joey safe. She once calculated that in a six-month period, there were 26 instances where she had to leave work because there was not a nurse available for Joey. She has had to leave work altogether for the time being, and knows that it will take a full year in a new position in order to even qualify for FMLA.

All parents have a difficult job in raising their children. But parents of medically-fragile children have an added layer of complication because a wrong move can put their child at-risk of danger, illness, or hospitalization. In July 2017, for example, Katie broke her ankle, causing her to be out of work for seven weeks. She ran out of FMLA by May of 2018 due to the recuperation time, coupled with the times she needed to take off when Joey did not have nursing or needed to go to a doctor. At that point, Joey contracted a lung abscess from the common cold and was hospitalized for one month. At this same time, a tree fell onto her house causing extensive damage, and her father—who often took care of Joey—died unexpectedly two months later. “Issues like these are significant for anyone—absolutely. But with a homebound child, these complicate everything ten-fold,” says Kateri.

Consistent home-nursing coverage brings more than peace of mind and a spare set of hands to families like Kateri’s. Joey’s conditions require medical expertise from a nurse—not a family member. Additionally, consistent care from a dedicated nurse ensures that Joey’s signs and symptoms are well-known so that the nurse can take action when they sense a change in condition. Their reactions save children’s lives. But in DE, many nurses are part time or are pulled to other cases due to the difference between the number of in-home nurses needed, and the demand. PDN rates—which have not been increased for 16 years—do not take into account medically-complex children’s acuity levels and nurses’ training certifications, the exposure of nurses who take on many cases, the increased costs of care associated with COVID, and the differentials in nurses’ wages for day versus night shifts, overtime, and cases in hard-to-staff areas.

Katie says, “One of the most difficult things for parents of medically-fragile children is the expectations that the State puts on us. I need nursing care to keep my son at home. I am expected to work to provide for my family, while caring for my medically-complex homebound child, while still being able to sleep, eat, and care for myself and my other son. Not to mention the time commitment it takes for me to be a parent—I must manage doctors’ appointments, pick-up prescriptions, order durable medical supplies, wade through the insurance aspects, and provide him and his brother with schooling. Home nursing is a lifeline for parents, and the state should ensure that all families can stay safe together at home and kids can grow up at home—rather than in a hospital or skilled nursing home.”

In 2019, the Make-A-Wish Foundation helped make Joey’s dream come true with a trip to Disney World.

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Kitty Fletcher, Georgetown DE – Grandmother & guardian of 10-year-old Brianna Vanvorst

Brianna Vanvorst was diagnosed with Dandy–Walker syndrome (DWS), a rare congenital brain malformation with significant and severe medical complications, at birth. Given a grave diagnosis and a short lifespan, Brianna was not expected to live past infancy. But her grandmother and guardian Kitty Fletcher has never given up. With Kitty’s fierce love and support—along with the home health care nurses that care for Brianna daily while keeping her safe and comfortable at home with Kitty—Brianna has made it to the miraculous age of ten. “After she turned six, her doctor finally quit telling me how long she had left to live,” says Kitty.

Brianna has been able to grow up and thrive safely at home despite these challenges. “I can confidently say that her quality of life, and her health and safety, are at least four times better at home with in-home nursing than they would be at a hospital or facility,” says Kitty. But despite the monumental gains she has made, Brianna cannot sit, stand, move, or communicate independently; she must be supervised around-the-clock. “What her nurses do at home is beyond what any medical team could do, even in an ICU,” says Kitty. Brianna has a trach, vent, and feeding tube. She also suffers from cortical vision impairment and significant hearing loss, incontinency, a life-threatening seizure disorder that causes multiple seizures per day, and chronic respiratory failure. In addition to seizure monitoring, nebulizer treatments, oxygen support, feedings, toileting, bathing, and multiple regular therapies, Brianna’s team of nurses help her to attend virtual school, and they allow Kitty the ability to keep her full-time job and continue to provide for Brianna.

The COVID-19 pandemic has added even more complications to Kitty and Brianna’s lives. Kitty worked with Brianna’s home care agency to rearrange her nursing coverage to limit the number of people she is exposed to. Kitty is an essential employee that works for the State of Delaware and currently conducts contact tracing and infection testing. When she gets home from work, she strips down, showers, and disinfects herself entirely before she is able to make any contact with Brianna or the nurse on duty.

Kitty’s late husband passed away four years ago, making Kitty Brianna’s sole provider and caretaker. With no immediate family in the vicinity, and with Brianna’s primary doctor and hospital two hours away in Wilmington, in-home nursing care has been a necessary lifeline for Brianna. “Brianna cannot be left alone for a moment. Without these nurses, there is no way I would be able to sleep, grocery shop, care for myself or the house—let alone have Brianna attend school or be able to hold down a full-time job,” says Kitty.

But Kitty also knows that the nursing care she has in place is precarious. The State has not increased funding for home care nursing in 16 years. In that time, costs of living and inflation have increased tremendously, and home health care agencies have struggled to maintain competitive wages for nurses. The State of Delaware is responsible for ensuring that families like Brianna’s can continue to access in-home healthcare to stay safe and together at home. “If one nurse calls out sick or leaves the home care industry for a nursing job in a hospital or facility, then our lives could snowball into full-on chaos,” adds Kitty. If the state government doesn’t increase funding for home care nurses, then the risks of these nurses finding better-paying jobs in hospitals and other facilities will increase. “At the end of the day, if nurses leave the field, then it’s children like Brianna that will suffer.”

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Haley Shiber, 23 – Smyrna, DE

Haley Shiber is a 23-year-old artist, storyteller and advocate who has worked with Delaware legislators throughout her young life to ensure that individuals with disabilities are empowered to live full and happy lives. Living with a form of Cerebral Palsy, Haley is wheelchair-bound and has used a communication device to speak since she was only a year old. Through Delaware’s Private Duty Nursing (PDN) program, Haley receives life-sustaining care from qualified nurses and home health aides that allow her to pursue her many passions including socializing with family and friends, gardening, reading the classics, riding her adaptive bicycle, and creating art.

Throughout the pandemic, Haley has been able to keep up with many of her activities through Zoom, utilizing the extra time at home to advance her artistic skills. However, due to Delaware’s ongoing in-home nursing shortage, Haley and her mom Deb have been forced to limit the number of caregivers that come into their home, as doctors told them that Haley’s compromised airways mean that she is not likely to survive infection. This in-home nursing shortage, which has only been exacerbated due to increased PPE costs from COVID-19, is caused by a dire lack of state funding for PDN. Delaware has not raised its Medicaid reimbursement rates in a shocking 16 years, and as a result, many qualified nurses are forced to take higher paying jobs in hospitals, nursing homes, schools, or doctor’s offices. Before COVID, Haley had a rotating schedule of nurses and aides, however many of them saw up to 2-3 other patients every day, including those in nursing homes where risk of infection is at its highest. It is especially hard to find nurses who are qualified to care for Haley because she requires nurses with specialized training to maintain her trach/vent and ensure that her airways remain uncompromised.

If Haley’s nurses were to miss a shift, her busy life and the lives of her loving family members would be put on hold. As her mom Deborah says, “All of what Haley does is possible because of her nurses.” Because of this Haley has visited state lawmakers to fight for her nurses in the past, and she continues to advocate for them from home now, working to ensure they receive better wages so that she can continue to create and thrive.

Throughout the pandemic, Haley has worked with the Art Therapy Express program to further hone her craft and create pieces that are to be displayed in a digital exhibition featuring art made during COVID-19 by individuals with disabilities. It is through this inspiring work that Haley continues to be a bright light in her community and beyond, and her continued participation is possible because of the work of her wonderful nurses.

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Pam Mayer, Bear, DE – Mother of 22-year-old Matt Mayer
*Featured on WDEL-AM radio on 12/4/20

In June 2016, 22-year-old Matthew (Matt) Mayer suffered a tragic automobile accident, resulting in a Traumatic Brain Injury (TBI). After several months in various hospitals and over two years spent in Cadia Rehabilitation Center (Wilmington, DE), Matt was reunited with his family full-time in 2019, and granted 117 nursing hours per week through Delaware’s Private Duty Nursing (PDN) program.

Due to the severity of Matt’s condition, he now requires a trach, feeding tube, and full team of specialized daytime and nighttime nurses in order to safely go about his daily life. As a result of Matt’s accident, he has been nonverbal and without most purposeful functions in each of his limbs for over 4 years. Pam Mayer, Matt’s mom states, “[For Matt], nursing is imperative and life-sustaining, but we needed our son home.” Before being reunited with her son, Pam and her husband transformed their two-car garage into a private, handicap accessible space for Matt to flourish. Amid the ongoing pandemic, this space has proven exceedingly practical as Matt’s parents both work full-time from home. “This space gives our son the privacy any 22-year-old boy could desire while keeping him at home with the ones who love him most,” Pam adds.

Matt’s family is extremely grateful for the high-quality care Matt receives. “Consistency is key for our family,” Pam states, “it is imperative Matt’s nurses know his baseline, so they can share any concerns with his doctors.” However, as Delaware’s reimbursement rates for PDN have remained at a standstill for 16 years, the Mayers and other families alike are growing increasingly concerned about retaining access to specialized nurses. Because of these low rates, many nurses, especially those who are qualified to deliver the kind of specialized care that Matt requires, are forced to find jobs in other settings like hospitals, doctor’s offices, or even schools in order to secure better wages. As a result, families like the Mayers are forced to put their lives – careers, sleep, and more – on-hold in order to provide care for their loved ones; and much of this is care that could be dangerous when not being delivered by a trained medical professional.

The Mayers understand the laborious nature of in-home nursing, especially when caring for an adult like Matt with significant physical disabilities. Though they have grown to cherish their beloved nurses, they understand that nurses have families and financial requirements of their own. Without their dedicated team of nurses, the Mayer’s would likely be forced to significantly alter their full-time employment. The Mayer’s are thankful Matt is no longer in a care facility, which is especially dangerous now that so many long-term care facilities are continuing to be ravaged by COVID-19.

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Belinda Brittain, Felton, DE – Mother of 26-year-old Leanna Brittain

26-year-old Leanna Brittain of Felton, DE was born with Holoprosencephaly (HPE), Hydrocephalus, and a form of Cerebral Palsy. Statistically, less than 1% of children born with HPE survive past infancy, yet Leanna has managed to defy the odds. Leanna was allocated roughly 70 hours of nursing care per week through Delaware’s Private Duty Nursing (PDN) Program. Due to unforeseen circumstances, Leanna’s mother, Belinda Brittain, became certified as her daughter’s Personal Care Assistant to cover an additional 40 hours per week.

The onset of the global pandemic has affected the Brittains in a precarious way. Leanna relies on a team of skilled nurses to keep her safe and manage her medical necessities, which include specialized training in G-tube maintenance, daily breathing exercises, and treatments, as well as daily chest physiotherapy among other various physical therapies. However, Delaware’s lax reimbursement rates have made it difficult to find and maintain qualified nurses. “Leanna’s needs are very intense,” says Belinda, “but she is also very social and wants to be interacted with.”

Prior to the pandemic, Belinda was more than happy to guide new nurses (or nurses covering shifts) through the intricate needs of her daughter. But now the Brittain’s cannot risk exposing their child to COVID-19, and therefore, have been forced to limit the nurses entering their home to Leanna’s two consistent night nurses and one consistent day nurse. This not only poses an immense strain on her nursing staff to be routinely available for the hours they are scheduled but also discourages them from taking vacation and/or sick days. In the event a nurse is unable to show for a shift, particularly night nurses, Leanna’s parents must stay awake throughout the night to attend to their daughter’s needs.

The Brittain’s appreciate the hard work and diligence of their daughter’s nurses but understand they have financial requirements of their own. As Delaware’s PDN reimbursement rates have remained stagnant for 16 years, it is becoming increasingly difficult for families like the Brittain’s to maintain access to specialized nursing care. “Until we can give [home health nurses] more money for what they enjoy doing, they will continue to take the higher-paying jobs,” says Belinda. Home care can simply not compete with the compensation rates and benefits of hospitals and other related professions.

Massiah Jones & mother LaToya Martin – Dover, DE

To the naked eye, Massiah Jones may look like a perfectly healthy and normal 7-year-old boy. He loves running, playing, laughing, and watching his favorite cartoon characters Pocoyo and PJ Mask. But Massiah is medically fragile and suffers from life-threatening seizures and other complications as a result of Tuberous Sclerosis Complex (TSC). TSC is a rare, incurable genetic disorder that causes tumors to form on the brain and major organs. Massiah currently has more than four dozen tumors and tubers on his brain, heart, and eyes—and he has cysts on his kidneys that have resulted in a stage 1 kidney disease diagnosis. Since 2015, Massiah has undergone routine monthly bronchoscopy and laryngoscopy to remove airway growths—and since he began chemo in July of this year, those growths have slowed down, though they have not yet gone away.

Massiah has been able to grow up and thrive at home due to the care of his loving mom, LaToya Martin, who has sacrificed much in order to give her son the best care possible. She moved away from her friends and family in Virginia in order to move to Delaware to access AI Dupont for Massiah’s care. But now, since the COVID-19 pandemic, LaToya has been forced to forego basic care for herself due to the lack of nursing care she can access for Massiah.

As a single mom with only eight hours or in-home nursing respite care per week for Massiah, LaToya gets understandably extremely exhausted at times. “I am so grateful for Massiah’s nurse, and for the two days a week I am able to run errands, deep clean, and self-care while she is there keeping my son medically safe and healthy,” says LaToya. “But it’s simply not enough. Massiah is going through chemotherapy and multiple other appointments and therapies. As his mother it’s my job to keep him alive—but the state has it backwards, thinking that I am able to simultaneously provide for him while caring for him medically nearly 24/7.”

When the COVID-19 pandemic hit, Massiah lost his 55 hour per week authorization for nursing care because he was no longer in school. The state’s justification is that he can only qualify for care when school is in session. “This makes no sense- his condition has not changed, nor have my responsibilities,” says LaToya. “I am a mother, not a doctor or a nurse.”

In Delaware, home care agencies—those that provide in-home private duty nursing (PDN) services to families like LaToya’s—have advocated for better policies to ensure that vulnerable Delaware individuals and families can access enough quality in-home nursing care for their loved ones. “Many of Massiah’s nurses and doctors have impacted our lives tremendously,” says LaToya. I can only imagine how much more he would learn and grow if he was able to receive that consistent care safely at home while I provide for him as I am meant to—as a mom.”