Published in the Winter 2012 issue of SSA Magazine
Betsy Rubinstein explains what diabetes can mean to someone living in poverty by giving an example of a 62-year-old African American man who had been referred to the Chicago-based Heartland Alliance’s supportive housing program. When he had learned he had type 2 diabetes, his brief encounter with the medical system had only given him the diagnosis and a glucose meter.
“He hadn’t been talked through the process of managing his diabetes in a way that made sense to him or fit with his life experience. He had that one meter but didn’t know how to use it and hadn’t been checking his levels,” says Rubinstein, A.M. ’10, manager of program development at Heartland Human Care Services. As a result, the man’s diabetes had progressed to the point where he needed to have a foot amputated. “He began receiving services from our community health nurse only after his diabetes had led to an amputation. But if we had worked with him earlier, that likely could have been avoided,” Rubinstein says.
“If you go into Cook County’s Stroger Hospital, you will find people who have had strokes, who have had lower limb amputations, who have had very serious medical problems because of complications from diabetes, many of which did not have to occur,” says Harold Pollack, SSA’s Helen Ross Professor. “And because of the way health care has worked in this country, for many of them, they also have added financial obligations that will be difficult for them to pay.”
One of the many anticipated outcomes of the new federal health care law, the Patient Protection and Affordable Care Act, is a realignment of how medical care approaches chronic diseases like diabetes. Once the act is fully implemented in 2014—assuming that a Supreme Court decision or legislative repeal does not scuttle it—a complex mix of insurance reform, new programs and incentives for increased collaboration will have the potential to profoundly change how diabetes affects people living in poverty.
For conditions like diabetes, a disease that progresses silently but relentlessly, the differences include an expanded role for community-based social service agencies and social workers. “The most vulnerable populations have experienced poverty for awhile,” says Nadeen Israel A.M. ’10, policy associate at Heartland Alliance. “We understand the populations, we have established relationships and we speak their language. That’s crucial in having the goals of the Affordable Care Act realized. We won’t achieve the ACA goal of higher quality care at a lower cost without involving community-based social service agencies.”
Chronic illnesses such as diabetes can have insidious consequences for low-income patients and throughout low-income communities. The health care reform bill, the Affordable Care Act, may have a positive impact on how diabetes is treated when fully implemented in 2014 in many ways, including expansion of who is covered by Medicaid, what services Medicaid covers and more community health centers. For social workers, ACA implementation is also slated to provide funding for outreach and support to help patients manage the disease to prevent further health problems.
More than 8 percent of the American population— 25.8 million children and adults—either have diabetes or showed some evidence of the disease through clinical testing, according to the American Diabetes Association. African Americans, Mexican Americans and American Indians are notably more likely than whites to be diabetic. Common complications include heart disease, stroke, high blood pressure, blindness, kidney disease, neuropathy and amputation. Getting ongoing care is crucial, says Lee Seftenberg, A.M. ’97, a former medical social worker at University of Chicago Hospitals, who knows firsthand: She was diagnosed with type 1 diabetes while at SSA. Seftenberg wears an insulin pump, watches her diet carefully and uses test strips to check her blood glucose level five to eight times per day. She points out that without insurance, these supplies would get very expensive quickly.
“And seeing a doctor on a regular basis is very important; it’s recommended that I go every four months. Living with diabetes is a very delicate balance, and it takes a lot of education and a lot of knowledge to know how to regulate it,” says Seftenberg, who volunteers as a support group facilitator for the American Diabetes Association. “Preventative care is very important because this is a hidden disease. You’re not always seeing the symptoms, even though it’s doing destruction to your body.”
Prevention of complications and management of chronic health care issues has not been a traditional strength of the American medical system. “Providing good diabetes care requires highly skilled team care—dieticians, social workers, nurses—so people get the right care, at the right time, from the right person,” Pollack says. “The Affordable Care Act represents an effort to better orient the system toward prevention. Right now, there are many Americans who don’t have their blood glucose checked because they don’t go to the doctor, in part because of the cost.”
Emily Close, a social worker for pediatric endocrinology at Comer Children’s Hospital, says that she sees how the costs associated with managing diabetes can become a burden. “Even for the people who do have insurance but are still really stretched thin financially—if you’re not able to purchase food or pay your electric bill because you are scraping by to afford your medical supplies— stress management is a factor,” she says.
The Affordable Care Act’s biggest influence on diabetes in poor neighborhoods will be through Medicaid, which is currently available to poor people in certain categories, like children and pregnant women. In 2014, ACA extends Medicaid to anyone under age 65 living in a household under 133 percent of the poverty line. In Illinois, Israel estimates, this would add another 500,000 to 800,000 people to the state’s current Medicaid roll of about 2 million.
The effects of this expanded coverage would be significant. Pollack cites research on patients’ overall treatment and care before and after age 65—when they reach Medicare eligibility. “In the particular case of diabetes, when people become eligible for Medicare, we see improvements in their [blood sugar] levels and blood glucose levels,” he says. “People are getting better care, and there are concrete measures of improved health status. Medicare is not a cure-all, but it is valuable.”
What Medicaid covers will also change. Now, the program pays for diabetics’ costs after they become disabled according to Medicaid criteria, but not before, Close says. Under the ACA, Medicaid would pay for preventative services around health and wellness, which may include nutrition and fitness education, to help stave off the onset of diabetes or keep it under control if it’s already taken hold. “Diabetes is a manageable condition, but many patients can’t manage it, so they become disabled— and then qualify for benefits. But it didn’t have to be that way,” Close says. “I’m hopeful that if reform is carried out that it will help diabetes to be a manageable condition, not this lethal condition that it currently can be.”
While the changes to Medicaid are still on the horizon, the Affordable Care Act already has put into place guarantees against insurers denying people coverage due to pre-existing conditions and requiring young adults up to age 26 to be able to stay on their parents’ insurance. “People with pre-existing conditions, including those related to diabetes, [now] have much greater protections against insurers,” Pollack says, while the latter provision “is important for a group of people with juvenile diabetes.”
The ACA also contains funding for primary care community health centers in lower-income communities, which will increase on-the-street availability and accessibility of health care, and promotes integration of health providers with social service agencies that understand and have connections with low- and moderate-income populations. “You need people on the ground, primary care workers at health care centers, to make sure their patients have their insulin levels right,” says Colleen Grogan, a professor at SSA and co-chair for the School’s Center for Health Administration Studies.
These changes will allow Access Community Health Network in Chicago, which offers primary and preventative care to more than 200,000 patients at more than 50 community health center locations in and around Chicago, to expand their coverage. “Diabetes is a chronic condition that requires a lot of learning, a lot of time spent not just with the doctor but with others in our health centers, like nutritionists,” says Linda Diamond Shapiro, A.B. ’77 (College), A.M. ’78, M.B.A. ’88 (Booth), vice president of strategy, planning and external affairs at Access.
Diamond Shapiro figures the biggest impact of health care reform on an organization like Access, which bills patients on a sliding scale based on ability to pay, will be for the 60,000 patients they treat each year who are uninsured. “Our utilization by uninsured patients is slightly lower due to the core economics of their personal lives,” she says. “If more patients have insurance, more will come to us and be able to use not just doctors’ care but other chronic care services. We think that will translate into better health status.”
In more traditional hospitals, however, the incentives to provide primary care can run into hard economic realities. Many hospitals make more money from visits to the emergency room than through day-to-day preventative care. “The hope is that we’re addressing those incentives in health care reform so preventative work is rewarded,” Grogan says. “The ACA bill tries to do that, but it does not mandate it. We still will have private health insurance, and it is not clear whether insurance companies will change their reimbursement schemes to sufficiently reward preventive care.”
The Act also promotes “demonstration projects” that show best practices in care of diabetes and other ailments. “Maybe it means that a medical educator comes into someone’s house, looks in the cabinet and gives them advice on how to cook the right foods,” Pollack says. “Maybe it requires providing access to exercise in an unsafe community, so people can get out without feeling vulnerable to crime.”
States also have incentives to require providers who receive Medicaid to set up “medical homes” so patients have access to a group of providers at a single facility rather than going to different providers each time they’re sick. “This one place knows you and your family, you have a relationship, and that’s going to be followed through, even when you go to specialists, so you’re not lost in the system,” Grogan says. “This is the ideal. But we have a very fragmented system, so it will take a lot of restructuring to get from here to there.”
For social service agencies these changes open up a number of roles in working with clients suffering from diabetes. For one, they can help diabetic clients know about the new options available through the ACA. When new government health care programs have been unveiled in the past, many potential patients have remained unaware of how they can benefit, even when there has been a dedicated outreach campaign.
“There’s going to be a need for social workers to become acquainted with the medical system and to advise their clients, community members, neighbors, how to best take advantage of what’s out there,” says Barbara N. Passman, A.M. ’69, senior social worker for adult ambulatory services at the University of Chicago Hospitals. “As social workers, we’re obligated to educate ourselves and become wise advocates for the families we serve and people in the general community who may be unfamiliar with new programs.”
Israel says she could see Heartland Alliance’s role expand to providing more prevention services and helping people sign up for and then get the most from Medicaid or the insurance exchange subsidies. “Community-based organizations need to be at the table as health insurance navigators—both in performing outreach and in helping uninsured individuals and families enroll in coverage,” Israel says.
Social workers may become involved with specific programs as well. “With a diabetic, it’s not just seeing the doctor,” Passman says. “It’s patient obligations and chores that go along with managing it. You must take your medication and insulin and watch what you eat.” With the new funding models, there may be more support for social workers to help patients understand and maintain their health.
The potential to systematically integrate behavioral health services into a primary care visit is what excites Diamond Shapiro of Access. “Social workers are accessible behavioral health consultants. They are available to support the primary care encounter,” says Diamond Shapiro, who adds that the exchanges should also allow managed care companies to develop a “population health management approach,” where chronically ill patients can move from one type of facility or specialty to another seamlessly as their diseases progress.
Illinois passed legislation last spring stating that half of all Medicaid participants will be enrolled in “coordinated care” by 2015, a term that’s somewhat loosely defined but based on the idea of purposefully connecting elements of the health care system that today can be completely out of touch—the emergency room, specialists, primary care physicians, mental health providers. Here too, Israel points out, a social worker’s perspective and skills are a great match. “As the rules are coming down from CMS [the Centers for Medicare and Medicaid Services] and Illinois is figuring out how its exchange will be set up, it’s an exciting time to think about new opportunities and how patients will benefit—but there still are a lot of question marks,” she says.
Heartland Alliance has laid groundwork for the types of partnerships that could arise around diabetes through the “Take Charge of Your Diabetes” program based at Rush University in Chicago. Aimed at those over 55 who have or are at-risk of diabetes or are caregivers for someone who does, the program meets once a week for six weeks at the hospital and in community settings in and around Chicago, focusing on healthy eating, physical activity, reducing stress and monitoring blood sugar.
Under the Affordable Care Act, such services can be reimbursed through Medicaid. “We want wellness and prevention services under the ACA to be as expansive as possible,” Rubinstein says. “Integration [of health care and social service providers] is important because community-based organizations have access to underserved communities and have the cultural and linguistic competency to meet the needs of diverse populations.” It will be up to individual states to further expand the definition of what can be reimbursed through Medicaid once the essential health benefits rules are finalized by the Department of Health and Family Services. With increased funding, the ACA may also bolster the financial foundation of community-based health care organizations, which would be a positive step for public health, Pollack says. “Many of the sites that provide care for low-income people with diabetes are really struggling,” he says. “The Affordable Care Act can help us deal with that.”
Ninety percent of health care costs accrue from 10 percent of the population. In many cases, these patients are those who have other troubles that reflect and reinforce their medical issue: the chronically homeless, those with mental illness, people with addictions to drugs or alcohol. Any program that can help these populations deal with a condition like diabetes will pay dividends in other aspects of their life as well.
“Getting your foot amputated is a hospital admission,” Israel says, “plus, what are that person’s chances now of getting and keeping a job? It ripples down.”
So what might have happened to that 62-year-old African-American man if he had been diagnosed with diabetes in 2014? “It might not have gotten to the point where his foot had to be amputated,” Israel says. “When he goes to the doctor and gets the equipment, he could receive follow-up from a care coordinator in the community.”
“We would help him be able to better understand his condition” and give earlier recommendations on eating healthy and exercising, Rubinstein adds. “We would speak his language and meet him where he’s at. He would get to us faster, or even first.”