Illinois Health Information Exchange: Legal and Policy Issues

The adoption of electronic health records and a health information exchange (HIE) in the U.S. healthcare system, and the improvements in quality and cost that will result, has caused quite a stir across the country.  Even amidst all of the excitement and optimism, many people are concerned about potential negative consequences, and much of the controversy centers around the interplay between individuals’ privacy rights and the effectiveness of these new technologies.

The Illinois Office of Health Information Technology was created in 2010 by executive order to coordinate and direct Illinois HIT and HIE initiatives.  The OHIT and the Illinois Health Information Exchange Authority are working together to create the Illinois HIE (ILHIE).  To ensure that patient privacy rights are adequately protected, OHIT created an ILHIE Legal Task Force to identify and address Illinois laws raising complex challenges to the exchange of health information.  

While the Health Insurance Portability and Accountability Act’s (HIPAA) Privacy Rule lays out federal requirements governing the disclosure of a patient’s protected health information (PHI), this law sets a floor.  States are free to enact more strict privacy regulations, and Illinois has done so in a number of areas. The Legal Task Force has created ten workgroups, each assigned a specific disclosure issue which the group will investigate and then recommend improvements to the Illinois disclosure laws in that area.  These workgroups include PHI pertaining to behavioral health, substance abuse, HIV/AIDS status, and genetic testing. 

In addition to the legal barriers, OHIT is currently investigating key policy questions impacting the information put in the ILHIE and access to information.  

The first concern is whether patients should be granted a choice as to whether his/her information will be included in the ILHIE for use by health care professionals and others, and the extent of the effect given to this choice.  Next, if patients are given this choice, the question becomes whether all patients should be given the chance to affirmatively decline or consent to the inclusion of their PHI in the ILHIE.  If a patient decides he/she does not want to use the HIE, the permissibility and/or extent to which the patient’s data can be collected by the ILHIE for limited mandatory reporting (such as public health reporting) must also be addressed.    

Another issue arises when a patient may desire that only specific aspects of his or her medical record are not exchanged, or that specific providers can be denied access to the information, and whether this request can be accommodated or whether the patient’s entire record must then be excluded from the ILHIE.  Finally, if patients are given the choice as to whether or not to participate in the HIE, it must be determined what requirements, if any, should be placed on health care providers to inform the patient of the HIE and answer any questions, thereby ensuring the patient’s choice is truly meaningful.

Aside from the questions surrounding whether to include information in the HIE, barriers arise with respect to linking up the information within the HIE to the specific patient seeking health care.  One question being addressed is whether the ILHIE should use a unique patient identifier to enable patient records to be accumulated and matched to the patient with accuracy.  This is an important issue: problems can arise when other identifying information (such as name, birthday, gender, zip code, and/or all or part of the social security number) is used for this purpose, because patients having data in common, the entering of data in different formats at different facilities, and data entry errors can all prevent accurate record matching.  If a unique patient identifier is not created for the ILHIE, the question then becomes whether regulations should be imposed upon providers to ensure a certain degree of patient matching accuracy is achieved with the use of their EHR system with the HIE. 

The final policy question being addressed by OHIT concerns whether Illinois should enact its own laws and regulations governing patient rights with respect to their EHR, to supplement the rights already given to patients through federal law such as those giving patients the right to access their own medical records and request corrections.

For more information on the HIE or your information privacy and security, please visit the education page of the ILHIE or the Office of the National Coordinator.

Amanda Swanson, J.D., LL.M.

On This Memorial Day, Don't Forget Uninsured Veterans

A recent study released by the Robert Wood Johnson Foundation finds that 1 in 10 of the 12.5 million veterans in the U.S. is currently uninsured. Those veterans are more likely to be younger, less likely to be married and are less connected to the labor force—all factors that contribute to lower insurance rates.

In Illinois, 25,000 veterans, or 10.1% lack health coverage.  Add to that their family members, and that’s 68,000 men, women and children in military families without adequate access to health care. 

The Affordable Care Act has the potential to make a sizable dent in those numbers. Nearly half of uninsured veterans will become eligible for Medicaid under the program’s extension in 2014, when all citizens below 138% of the Federal Poverty Level will gain coverage.  Another 40% of those veterans will receive subsidies to use toward purchasing insurance in state health insurance exchanges. (For more information, see the Illinois Health Matters map of where all of those who are newly eligible for Medicaid live in Illinois.)

The RWJF report also found that insurance rates among veterans were higher in states that had made more progress toward implementing health insurance exchanges, as called for by the ACA. The opposite is true for those states that have made the least progress toward implementing health reforms, which are home to 40% of uninsured veterans. Illinois has made "moderate progress" toward implementation of an exchange -- the Illinois General Assembly tabled efforts to establish an exchange earlier this month, opting to wait until the Supreme Court releases their decision on the ACA before attempting to move forward.  Advocates still are urging Governor Quinn to sign an Executive Order to establish the Exchange.

Progressing forward with health reform efforts, the study claims, will be crucial to getting coverage for uninsured veterans.  In addition, other barriers to health care, such as a lack of nearby health centers,  or potential disruptions on coverage from public benefits, or a lack of awareness of potential benefits, need to be addressed.

At Health & Disability Advocates (HDA), we have seen firsthand that this is reality for service members in Illinois. For Veterans who are not insured it is important for them to have a good understanding of other state and local programs that could provide services for them and their families. HDA's Illinois Connections program assists veterans and military families connect to community services including health benefits. We have worked closely with the Illinois National Guard since those that have not been deployed are not eligible for veteran’s services, including health care through the federal VA system.

HDA's new volunteer veteran program, Illinois Warrior to Warrior, brings volunteers to Illinois National Guard units who are trained in community resources - including health care. This partnership with the National Guard allows trained volunteer veterans to be assigned to individual National Guard units and offer assistance to soldiers and their families in locating resources to meet their needs. This program is in a pilot stage in the Chicago area but will be expanded state-wide.

How military and veteran programs interact with civilian programs is complicated. At HDA, we provide tools and trainings to service providers in military/veteran and civilian systems.  See our complete list of trainings and services here and our YouTube video of our program here. If you know of a veteran in need of health insurance or health services, have them contact HDA at 312-223-9600.


Laura Gallagher Watkins, Director
Illinois Connections: Assisting Veterans & Military Families
Health & Disability Advocates

Safety Net Hospitals Spared, But Not Much Else in Medicaid Bills

Although Medicaid is a state & federal program, the City of Chicago got involved in the raging debate in Springfield. On Tuesday, May 22, 2012, Alderman George Cardenas (12th Ward) called a meeting of the Chicago City Council Committee on Health and Environmental Protection to discuss the way Governor Quinn’s proposed Medicaid cuts would affect medical care providers, specifically Safety Net Hospitals. Those hospitals have a client base that is primarily those without insurance, or those insured via Medicaid, which puts the hospitals in a position to be disproportionately affected by any Medicaid cuts.

Hospital CEOs, including those representing St. Anthony's, Mercy Hospital and Norwegian American Hospital and others, and community leaders including Metropolitan Chicago Healthcare Council, Health & Disability Advocates, Catalyst Schools, Lawndale Christian Development Center and the National Latino Education Institute, testified in front of the committee. Each person spoke about the impact of the cuts to their constituencies. The cuts would not only mean a loss of accessible healthcare in Chicago communities but also a steep decline in jobs, as many of the hospitals fuel the economic engine in the communities they serve.

Turns out some of the voices were heard: SB 2840, the final Medicaid budget bill (Named the "Save Medicaid Access and Resources Together (SMART) Act"), softens the original blow—sparing safety net hospitals from proposed provider reimbursement cuts, and lowering cuts overall from $240 million a year instead of $675 million. Passed by both houses on May 24, 2012, it will go to the Governor's desk for signature and will most likely be signed.

Unfortunately, many other health care programs for low income people and those with disabilities in Illinois were not spared in the bill. A full list can be found here, but the cuts include:

• Elimination of Illinois Cares Rx
• Family Care Eligibility reduction to 133% FPL (from 185%-400% FPL)
• Elimination of General Assistance Medical
• Adult Dental Eliminated (except in emergencies)
• 4 Prescription per month limit

These cuts will be devastating to many vulnerable populations and advocates are gearing up for the anxious phone calls from clients and providers.

The one silver lining in yesterday's legislative action is that the Cook County 1115 waiver (HB 5007) passed both houses which will allow Cook County Health and Hospital System to expand access to care for about 250,000 low income adults (below 138% FPL) in the area. Under the Affordable Care Act, their health insurance will be covered by the federal government so this will save the State $36 million per year. Of course, this is dependent on the Supreme Court upholding the ACA. Assuming it does, this early expansion of Medicaid is a huge kickstart toward ACA implementation in Illinois.

One baby step forward, two giant steps back:

So, while we mourn the Medicaid losses in SB 2840, we need to celebrate the gains in HB 5007. Nevertheless, it's important to keep talking about the life-threatening and costly implications of the stunning loss of access to affordable, quality health care that will be triggered by the signing of this "SMART" law. We also need to share clear information about the potential benefits of implementation of the Affordable Care Act, even though the ACA will not completely undo the economic cost and harm set forth in yesterday's decision.

Stephani Becker
Health & Disability Advocates, project director of Illinois Health Matters

Strengthen Home Care

Recently, legislators made the prudent decision to pass the Budgeting for Results law, holding Illinois accountable to fund only programs with proven effectiveness. Budgeting for Results lays out the state’s commitment to home and community-based care, including through Medicaid programs.

The development of Illinois home-care system has been a challenging venture over the past several decades; and yet the home-care system is hardly prepared for the aging of the baby boom generation. The proposed cuts to home-care programs through Medicaid budget proposals contradict the call to responsibility outlined in Budgeting for Results.

Proposals include increasing the eligibility threshold for Medicaid community-living waivers. However, our recent research for a report reveals that community-living waiver cuts will result in an increase in utilization of hospitals, emergency rooms and nursing facilities — more costly options than home care.

We call upon our legislators to strengthen, not weaken, their commitment to community living for Illinois’ most vulnerable citizens.

Kristen Pavle, 

Associate Director, Center for Long-Term Care Reform

Health & Medicine Policy Research Group

(originally posted as a Letter to the Editor here in the 5/23/12 Chicago Sun Times)

The Affordable Care Act Will Not Replace Illinois Cares Rx

Illinois Cares Rx is one of the many health programs on the chopping block in Governor Quinn's Medicaid budget plan. This will affect 160,000 low income seniors and people with disabilities who receive Illinois Cares Rx to help them pay for life-saving medications, typically for chronic health conditions such as Multiple Sclerosis, heart disease or Alzheimer’s.

There are no "good" choices when it comes to budget cuts in health & human services in Illinois - but it's critical for state legislators to separate the myths from the facts when decision time arrives. One of the myths being spread around is that Illinois Cares Rx can be cut because the Affordable Care Act will replace it in 2014.

Simply put, that is not true:

• Illinois Cares Rx pays for Medicare Part D premiums; the Affordable Care Act will not.
• Illinois Cares Rx covers Medicare Part D deductibles; the Affordable Care Act will not.
• Illinois Cares Rx reduces the cost of medications when seniors and people with disabilities hit the "donut hole;" while the Affordable Care Act has begun to close the donut hole it will not completely close it until 2020.

See a full comparison chart here that shows what Illinois Cares Rx currently provides for low income seniors and people with disabilities and how it intersects with the Affordable Care Act. You can see that the overlap is minimal.

Please call your legislators and make sure that they have the facts about Illinois Cares Rx cuts which affects all districts in Illinois. Call 1-888-616-3322 which will connect you directly to your legislators and tell them to “Preserve Funding for Illinois Cares Rx.”


John Coburn
Senior Policy Attorney
Health & Disability Advocates

Medicaid plan would shake up the way hospitals are paid

A draft copy of Medicaid reform legislation closely resembles a proposal that Gov. Pat Quinn made last month. However, it appears that it would reform the way some medical providers are paid and potentially avoid immediate cuts to their rates.

The plan would transition hospitals to a payment plan known as an All Patient Refined Diagnosis Related Groups (APR-DRG) system, according to a draft version of the amendment obtained by Illinois Issues. The legislation covers more than 400 pages.

Quinn’s office did not respond to questions about the draft amendment.

APR-DRGs were created by 3M Health Information Systems for the Center for Medicaid and Medicare Services. “The design and development of the [Diagnosis Related Groups (DRGs)] began in the late '60s at Yale University,” said an overview of DRGs from 3M. “The initial motivation for developing the DRGs was to create an effective framework for monitoring the quality of care and the utilization of services in a hospital setting. The first large-scale application of the DRGs was in the late '70s in the state of New Jersey. The New Jersey State Department of Health used DRGs as the basis of a prospective payment system in which hospitals were reimbursed a fixed DRG specific amount for each patient treated.” The system takes into consideration the complexity of the health issues facing patients that hospitals are treating.

Starting in October 2012,The Department of Health and Family Services would determine the reimbursement rates for inpatient services at hospitals under the APR-DRG payment plan, but Hospitals would still get paid current rates. DHFS would work with the Illinois Hospital Association and a "hospital technical advisory group" on a path to transitioning to the APR-DRG rates by the end of Fiscal Year 2014.

Danny Chun, vice president of corporate communications and marketing for the Illinois Hospital Association, would not comment on specifics of the amendment but said rate cuts to medical providers should be a “last resort.” “There are other options and alternatives that we have been talking to everybody about over the past weeks and months that we think can generate substantial savings and revenues,” Chun said.

Quinn’s original plan would have cut provider reimbursement rates by $675 million. Quinn also proposed a $1-a-pack cigarette tax increase to protect the program and providers from deeper cuts. Such a tax increase would likely be moved in separate legislation.

The draft amendment calls for savings in areas that Quinn outlined in his original proposal. Under the plan:

• The Department of Healthcare and Family Services would no longer be required to provide adult dental care or eyeglasses. This does not mean that it would necessarily eliminate eyeglasses. It could also offer to scale back the program by offering replacements less often.

• Illinois Cares RX, a program that provides prescription drug health to seniors, would be eliminated.

• All patients would be limited to four prescriptions a month. Three of them could be brand name drugs. Patients would pay a $2 copay for generic drugs. They currently have no copay for generics.

• Coverage for group therapy in nursing homes, adult chiropractic care and in patient detox programs would be eliminated.

• Repairs to or replacement of medical equipment, such as wheelchairs and prosthetic devices, would require prior approval from DHFS. The proposal also contains provisions targeting fraud and calls for the state to contract with a vendor to help DHFS verify the eligibility of Medicaid patients.

Sen. Dale Righter, a member of a legislative working group charged with finding Medicaid savings, said he had not seen the amendment. He said he expects Quinn to file his plan by the end of the week. Righter said the rates paid to Medicaid providers have been a pivotal part of negotiations. “I know there is still a lot of talk going on about [provider reimbursements], and I think we’re going to learn a lot more in the next couple of days,” he said.

That's not to say, however, that provider rate cuts would not be a part of the final legislation. Another possibility being considered would spare so-called safety net hospitals — which take a high rate of Medicaid patients and are often in underserved communities — from rate cuts while other hospitals would have to bite the bullet on reductions. Those close to negotiations say the overall plan is still a work in progress and that Quinn’s final proposal would likely see changes from the amendment that is currently circulating.

Righter, a Republican from Mattoon, said it is unlikely that the working group will present competing legislation. “I don’t think it will shake out that way. There will be competing ideas out there, but I don’t think you’re going to see a governor’s bill and a working group’s bill, I don’t think it will break out like that.” 

By Jamey Dunn and Ashley Griffin
Illinois Issues Blog - The official blog of Illinois Issues magazine, published by the Center for State Policy and Leadership at the University of Illinois Springfield

(Originally posted here on 5/16/12)

Schools: The Missing Link in Promoting Healthy Children

On May 9^th, 2012, Healthy Schools Campaign and Trust for America’s Health, along with a group of partner organizations (including Health & Disability Advocates), released policy recommendations to Secretary of EducationArne Duncan and Secretary of Health and Human Services Kathleen Sebelius. The recommendations called on the departments to “further support the critical connection between health and learning, and build this priority into the Department’s infrastructure and leadership.”

A strong connection exists between children’s health and education. A child who is healthy is more likely to attend school and engage in learning. However, many schools lack things necessary to promoting health, such as access to clean air and water, nutritious food and school nurses; and do not provide an opportunity for students to be active throughout the day.  

School’s lack of emphasis on health comes at a time when promoting health is of the utmost importance. Rates of chronic diseases, such as asthma, diabetes or obesity, have doubled among kids in the last several decades. Students with a chronic condition often need extra care to manage their condition, and school—a place where many kids spend most of their time—could play an important role in their health.

Our nation faces a growing achievement gap in our nation’s students—which recent studies have shown to be linked to health issues. Low-income minority students are more likely to suffer from health issues, as well as more likely to attend a school without a healthy environment.

Healthy Schools Campaign, Trust for America’s Health and their partner organizations crafted their recommendations with these strong connections between health and learning in mind. The recommendations focus on actions that are within the government’s role to make and can have an immediate impact on the health of students and the achievement gap:

Recommendations to the Department of Education:

1. Expanding the mandate of the Office of Safe and Healthy Students (OSHS) and appointing a Deputy Assistant Secretary to the office in order to build up the office’s capacity for leadership.
2. Support pre-service and professional development programs for teachers and principals by making health a priority in grants and other training programs.
3. Make health an important factor of the standard of excellence for the Blue Ribbon Program.
4. Developing and disseminating best practices for colleges and universities to support teachers’ and school leaders’ abilities to address student health needs
5. Support the development of resources for schools to effectively engage parents around school health and wellness issues.
6. Support the development of educational data systems and school accountability programs that incorporate student health.

Recommendation to the Department of Health and Human Services:

1. Reduce barriers schools face in providing health care to students: Currently, restrictive regulations limit the reimbursements schools can receive from Medicaid. Removing these restrictions, which HHS itself deemed “unenforceable,” would allow schools to expand the health care schools can afford to provide to students.
2.   Include Schools in the National Prevention Strategy: The strategy emphasized the importance of making good health a priority in all areas of life, not just within a health care setting. It is important for HHS to acknowledge how important schools are to an effective prevention strategy, and to fully investigate the role schools may be able to play in promoting health.

At the event, Secretary of Health and Human Services Kathleen Sebelius announced a $75 million investment in the establishment of school health centers, as a part of the School-Based Health Center Capital (SBHCC) Program, created by the Affordable Care Act. These health centers offer disease prevention and health screenings to students. This announcement marks one of many necessary steps in the right direction towards the integration of health and education.

Stephanie Altman

Health & Disability Advocates; Program and Policy Director

Check back with Illinois Health Matters for more info on how the Department of Education and the Department of Health and Human Services integrate health into the nation’s schools.