Families without in-hospital nurses step up to care for kids at home
Red tape is wasting taxpayer dollars and disrupting lives of families with medically fragile children in the south and southwest suburbs and elsewhere.
There is a critical shortage of pediatric nurses willing to work for low wages paid by agencies that serve families with children who need ventilators, feeding tubes and other types of equipment and care to survive.
“We have clients who live in the Orland Park area who are having trouble getting nursing,” said Kathy Logan, co-owner of BrightStar Care Orland Park/ Will County.
Agencies are doing their best to hire nurses. But a bureaucracy that involves Medicaid waivers means most nurses are choosing to work for hospitals or other employers that can pay much more than home-care providers.
“For us to break even we can’t pay the nurse more than $29 an hour,” Logan said. “Nobody is accepting this. Nurses are making $45 an hour or more.”
Since there aren’t enough nurses at agencies that provide care in homes, many children remain at hospitals or other institutions where the costs of daily care are much greater. In some cases, parents undergo training to become caregivers and quit their jobs to look after their children full-time at home.
Many children with chronic conditions remain at institutions much longer than they should. Some children wait more than a year to come home due to the nursing shortage, Logan said.
Area families are begging for service, but agencies such as BrightStar Care are unable to take on new clients because they lack nurses to serve them, Logan said. Logan and her husband, Jim, founded the Orland Park/ Will County franchise of BrightStar about 20 years ago.
At the time, Logan sought a caregiver for her elderly mother and realized the need for more agencies to serve the area’s population. Most of their business, she said, remains devoted to providing home-based care for people who are elderly or who have dementia or other conditions.
“We picked up children because we were able to give these parents a helping hand,” she said. Her BrightStar agency served about 40 families with medically fragile children at one time, she said. Now it serves about 20 due to the shortage of pediatric nurses able to provide at-home care, she said.
Clients are families with children who need constant care. They may have been born months premature or with rare conditions that affect vital organs. They may have suffered permanent brain damage as a result of nearly drowning.
Many families with medically fragile children are eligible for a government-supported program that uses Medicaid waivers to channel funding to caregivers, said Bryan Brinkmeyer, director of operations for BrightStar Orland Park/ Will County.
In Illinois, the program is administered by the University of Illinois at Chicago’s Division of Specialized Care for Children, or DSCC. UIC serves as a sponsor of the Medicaid waiver program. A key component of Medicaid waiver programs is that the cost of providing at-home care can never exceed the cost of caring for a child in an institution, he said.
“Right now it’s not even close,” Brinkmeyer said.
The government might allot a family $21,000 to cover the cost of providing a month’s worth of at-home nursing care, he said. That may seem like a lot of money, but providing 16 hours of nursing care per day for 30 days is 480 hours.
The government that agreed to pay an agency $21,000 for a month’s worth at-home care instead might pay an institution such as Lurie Children’s Hospital $21,000 to provide a week’s worth of care. The nursing shortage is costing taxpayers more
because institutions are caring for children who could be home.
“If you look at an episode of care, someone sitting at Lurie for 60 days versus getting discharged in two weeks and immediately getting set up with services through an agency like ours through the DSCC program, that’s got to be an enormous amount of money,” Brinkmeyer said.
Logan and Brinkmeyer said agencies like theirs are all experiencing the same dilemma. There are more than 1,000 children in Illinois with Medicaid waivers and about 80 nursing agencies approved to work with them, the Chicago Tribune recently reported.
Hospitals, agencies and the government all seem to be doing their best to help families with children who need care. The shortage of pediatric in-home nurses care deserves more attention so lawmakers can solve the crisis.
The crisis is nationwide, and Congress appears to be listening to concerns. Earlier this year, U.S. Sen. Bob Casey, D-Pa., reintroduced the proposed Better Care Better Jobs Act that was originally introduced in 2021.
“The United States is in the midst of a caregiving crisis,” Casey said in a statement in January. “Across this nation, seniors and people with disabilities are struggling to find and afford care, forcing families to make difficult decisions like leaving the workforce in order to care for a loved one.”
The bill addresses Medicaid home and community-based services, or HCBS, the programs serve more than 3.5 million Americans, but another 650,000 people are on waiting lists for home-based care. Congress also authorize short-term funding for HCBS through the American Rescue Plan Act.
The pandemic worsened the nation’s caregiving crisis, federal lawmakers said, as many home-based caregivers earned wages that placed them below the poverty line. The home care workforce is mostly women and people of color who earn a median wage of $13 an hour, according to Casey.
The nursing shortage is worse in Illinois than in other states, Logan and Brinkmeyer said.
“While all states provide coverage for some home care services, there are significant variations and gaps in coverage due to varying eligibility and benefits standards,” Casey said in the statement.
Here’s hoping Congress approves additional funding for more efficient and affordable home care services that would help reduce overall costs to taxpayers and potentially grow the economy by allowing family members who provide care to remain in the workforce.
Also, state administrators should seek ways to cut red tape and solve the pay disparity issue for at-home pediatric nursing care that is creating bottlenecks throughout the health care system.