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Illinois health care equity law expands funding for home visiting, community health workers

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Gov. Pritzker and members of the Illinois Legislative Black Caucus discuss legislation that seeks to improve health care equity.

Oscar Cushinberry says he was "on a really bad down side" before community health worker Bobby McKinney became his trusted adviser and advocate.

"I'm 100% better off in my life now," said Cushinberry, 65, a Springfield resident who is drinking less, more hopeful and on track to correct painful conditions in his left leg with surgery.

Elsewhere in Springfield, Prescilla Johnson says a registered nurse who has made regular visits to her home since she was four months pregnant has helped the 25-year-old first-time mother begin and continue to breastfeed.

The nurse, who has been available to Johnson anytime by phone, also educated her on child development and offered tips on promoting brain development for her 1 1/2 -year-old son, Midas King. The nurse has warned Johnson not to use television as a babysitter.

"She's always there when I need her," said Johnson, a single mother and full-time housekeeper at Memorial Medical Center. "It makes me feel supported."

Both Cushinberry and Johnson benefited from free services expected to expand across the state under the Illinois Health Care and Human Services Reform Act. Signed into law by Gov. J.B. Pritzker in April, the legislation represented the health care "pillar" of the Illinois Legislative Black Caucus. It was part of a package of bills to reduce systemic racism and inequities that have plagued Black people, Hispanic people and low-income people of all colors for decades.

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The series of bills that passed the General Assembly during the January "lame-duck" session and the spring session were propelled in large part by the 2020 death of George Floyd in Minneapolis at the hands of police and by other high-profile deaths of Black people as well as health care inequities illuminated during the COVID-19 pandemic.

Critics said the Black caucus' pillars were rushed through by Democratic majorities in the Illinois House and Senate without enough attention to potential costs and other ramifications.

Black legislators and Pritzker, a Democrat, said the measures were long overdue and initial steps to address institutional racism.

The new health care equity law, House Bill 158, contains a range of programs funded through the state's Medicaid program, which receives at least 50% of its funding through reimbursements from the federal government.

The fiscal 2022 state budget headed to Pritzker for his signature contains a total of $112.7 million to help carry out the new law.

Lawmakers and advocates have highlighted several pieces of the law as key to reducing health care inequities overall and specifically reduce deaths of babies, rates of child abuse and neglect and death rates for pregnant women of color during and shortly after delivery.

For community health workers, the law will devote $2.5 million in fiscal 2022 to reimburse for their services to Medicaid clients. These workers are employed in a variety of settings and are specifically trained in assisting low-income people connect with social services and health care services and improve their quality of life overall.

They help address what are known as the "social determinants of health," or factors such as poverty, emotional trauma and other issues outside a doctor's office.

The law also will boost state funding for home-visiting services by $38 million and provide $15 million in Medicaid reimbursements for doula services for women who are pregnant and parenting.

The law also will create a Behavioral Health and Workforce Education Center somewhere in the state to expand the number of mental-health professionals available in underserved communities.

And the law mandates anti-bias training for doctors and other health care professionals before their state licenses are renewed.

More details about how the law's funding and other provisions will take effect in Springfield and statewide could take months to become clear, but there is optimism among people who serve low-income clients and minorities.

SIU's Access to Health program

McKinney focuses his work as a community health worker in Springfield's north end as part of a program run by Southern Illinois University School of Medicine. SIU's Access To Health program is funded in part with a three-year, $500,000 grant from HSHS St. John's Hospital and Memorial Medical Center.

Lori Williams, SIU's associate provost for external relations, said the program has been successful in improving clients' lives and reducing unnecessary visits to hospital emergency rooms.

Beginning in Springfield's Enos Park neighborhood in 2015, the program has expanded to the Pillsbury Mills neighborhood and other parts of the city, as well as to Carbondale, Quincy and Decatur. About 1,300 clients were served in the past year.

"Community health workers are an essential member of the health care team," Williams said.

But when it comes to SIU's Access To Health program, Williams said, "The challenge is how do we grow it? The real problem is that we don't have sustainable funding for the services."

Future funding for community health workers "will be contemplated through the budget process," according to Jamie Munks, spokeswoman for the Illinois Department of Healthcare and Family Services.

Rikeesha Phelon, spokeswoman for SIU School of Medicine, said expanded Medicaid reimbursement for community health workers' services "would be game-changing.

"Reimbursement would allow us to greatly expand services and create true partnerships with our clinical teams to assist with managing patients outside of regular office visits," she said. "This would be most beneficial to at-risk, underserved communities and patients with chronic illness."

In addition to funding, the equity law will establish a system of training and certification for community health workers.

Leticia Boughton Price, president and chief executive officer of the Chicago-based Illinois Community Health Workers Association, said she hopes the state's training and certification will pave the way for more reimbursement of workers' services through Medicaid, private insurance and government and private grants.

Government estimates put the number of community health workers in Illinois at about 2,700, but Boughton Price and Wandy Hernandez-Gordon, the association's vice president and cofounder, believe the actual number is higher.

Regardless, they said more community health workers are needed.

Boughton Price said community health workers have improved people's lives for decades, and their usefulness has become even more obvious during the pandemic.

"They are trusted individuals who look like the communities they serve," she said.

Hernandez-Gordon said community health workers in Illinois and nationwide "are about empowerment, social justice, integrity and respect. We have about 250 different titles. We focus on all the inequities that exist."

On Springfield's north end, McKinney, 57, first met Cushinberry several years ago when McKinney worked at a homeless shelter, and Cushinberry was a client.

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Cushinberry said he has had a history of arguments with office staff at doctors' offices.

McKinney said, "No one was going to deal with him at all."

In recent months, McKinney has accompanied Cushinberry, a stroke survivor, to medical visits to help with communication between the office staff and health care providers.

McKinney said he also has worked with Cushinberry — a former truck driver and laborer now receiving Supplemental Security Income (SSI) — to cut down on Cushinberry's drinking because intoxication played a role in his past run-ins with office staff.

McKinney said he has been proud of Cushinberry's progress. And the leg problems that began for Cushinberry when he was hit by a car 13 years ago finally may be resolved with surgery that could take place later this month, McKinney said.

Cushinberry said he is relieved because "things are moving forward." He said McKinney has "been there 100% for me."

McKinney said community health workers build trust with clients "by meeting them where they are at. The key to helping a client is shutting your mouth and listening. Community health workers do not give up on their clients."

Home visiting expansion needed

Prescilla Johnson, the 25-year-old single mother, said the breastfeeding advice from her home-visiting nurse was essential because Johnson's mother never breastfed her own three children.

The type of services Johnson receives can set more children on the road to success in school and life and ease stress on low-income parents to reduce the likelihood of abuse and neglect, according to Debbie Tiskos of the Sangamon County Department of Public Health.

Tiskos, a registered nurse, manages the county's Healthy Families home visiting program, which receives about $407,000 in state funding to serve between 65 and 100 families with low-income pregnant or parenting mothers each year.

More funding would result in fewer families being turned away for services and more promotional efforts to enroll families and reduce the stigma sometimes associated with receiving services, Tiskos said.

"There's a lot of families that are not being seen because we don't even know about them," she said.

In addition to more staff, additional funding could allow home visitors to provide more materials to clients, such as books for their young children, Tiskos said.

About 21,000 children are in Illinois families receiving home-visiting services supported by about $77 million in annual state funding. But an estimated 37,000 children are eligible for, and could benefit from, home-visiting services if more funding were available, according to Jonathan Doster, legislative affairs director for the nonprofit organization Start Early. The organization used to be known as The Ounce of Prevention.

"One of the most cost-effective intervention services is home visiting," he said. "The equity law's increased funding for home visiting could greatly expand support for home visiting over the next few years."

The law also could drastically increase the availability of doula services for poor women, he said. Those services have been proven to reduce maternal mortality by promoting early detection of physical and mental health complications during and after delivery, he said.

About 41,000 Illinois families could benefit from access to state-funded doula services, but only 1,100 Illinois families receive those services, he said.

Private doula services generally cost $600 to $1,000 in the Springfield area, according to Nancy Kyrouac, a local doula involved with central Illinois' Gentle Touch Doulas Collective.

"We're a consistent presence" during the birth process, Kyrouac said. "Having someone who is present with that mom ... is the thing that people need emotionally."

Tracey Smith, director of community health and programs for the Illinois Public Health Association, said doulas help increase access to care for low-income people.

"They listen, they guide and help," Smith said.

The degree to which Medicaid funding of doula and home-visiting services expands access to those services will depend on reimbursement rates that still need to be set by the state, said Kelsie Landers, policy and advocacy director for Everthrive Illinois.

The law's Behavioral Workforce Education Center could greatly expand access to mental-health services, according to Dr. Kari Wolf, chairwoman of SIU's department of psychiatry.

She said Illinois lags behind the national average for availability of behavioral-health professionals. More than 45% of the 1.6 million Illinoisans who have experienced a mental illness did not receive treatment, according to a 2017 survey.

An average of 799,000 people in Illinois 12 and older need but do not receive substance-use disorder treatment at specialty facilities, she said.

The Springfield-based medical school would like to be the education center's home, Wolf said. Details such as location and funding are still being worked out by the Illinois Board of Higher Education, spokeswoman Melissa Hahn said.

Also in the works is how anti-bias training for health care professionals will be conducted, according to a spokesman for the Illinois Department of Financial and Professional Regulation.

Abigail Ivancictis, lead health educator at the Illinois Public Health Association, said she and her co-workers may be called upon to do some of the training. They already provide it to some health professionals, she said.

Ivancictis said her training involves professionals taking a survey on implicit biases to help them become more aware of the problem.

Bias in health care often involves professionals not believing the health complaints voiced by people of color. Black patients, for example, often are viewed as "drug seekers" when they often have other, legitimate health concerns, Ivancictis said.

Other patients may be discriminated against because of their weight. Health professionals may gloss over their concerns by telling these patients they just need to lose weight to feel better, Ivancictis said.

Patients who feel judged because of their social class, color or appearance often stop asking for help for their health problems, she said.

"It causes people to stop engaging in health care," she said. "They don't feel welcome."

Health professionals have "ah-ha" moments when anti-bias training convinces them that being well-educated or well-meaning may not be enough to overcome discriminatory attitudes, Ivancictis said.

"It takes that person being willing to accept what I'm saying," she said.


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